Guest guest Posted May 5, 2011 Report Share Posted May 5, 2011 I looked these up, wow, not appealing. I have to suppose that one has to weight the issues the meds are suppose to alleviate against those it will initiate. I know they all have side effect warnings that may not occur, however, not a fan of meds here. I took Thorazine during both my pregnancies for extreme hyper-emisis (?) and have to say it changed my life and left me quite traumatized from the experiences. I won't go near any meds with "zine" in the name, nor will I give them to my pets which is often prescribed for them for anxiety. I found they are more upset at the lack of control they feel than if they just endured the stressor to begin with. bad stuff. could we hear from someone who's taken either of these? what exactly is spasticity with regards to ms? I think of a muscle spasm, like an eye twitch and not a cramp...perhaps my issues relating to tendons binding are actually spasms and I'm not using the right terms... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2011 Report Share Posted May 5, 2011 I've taken both klonopin & baclofen. I found that baclofen had no benefits for me. And, when I increased dosage, I got a bit paranoid and lost my appetite and was too tired. The klonopin helped a little. However, because both are "benzo" drugs, NO medicare prescription plans will cover them. So, for me, it's not worth the out-of-pocket costs to use them Dan U dao_nguu@... To: MSersLife From: squasch@...Date: Thu, 5 May 2011 05:10:29 -0700Subject: Re: klonopin or baclofen I looked these up, wow, not appealing. I have to suppose that one has to weight the issues the meds are suppose to alleviate against those it will initiate. I know they all have side effect warnings that may not occur, however, not a fan of meds here. I took Thorazine during both my pregnancies for extreme hyper-emisis (?) and have to say it changed my life and left me quite traumatized from the experiences. I won't go near any meds with "zine" in the name, nor will I give them to my pets which is often prescribed for them for anxiety. I found they are more upset at the lack of control they feel than if they just endured the stressor to begin with. bad stuff. could we hear from someone who's taken either of these? what exactly is spasticity with regards to ms? I think of a muscle spasm, like an eye twitch and not a cramp...perhaps my issues relating to tendons binding are actually spasms and I'm not using the right terms... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2011 Report Share Posted May 5, 2011 Spasms are sometimes twitches but are often a tightness in the muscles. It's hard to describe. Maybe someone else here can describe it better? Sometimes they are like charley horses only way, way worse.I have been on heavy meds at times (neurontin, klonopin, baclofen) but for over a year I have been med free except for my high blood pressure med and thyroid med. I think the klonopin was the easiest med I have taken for the cramping/spasms. if I had to take sometime again for the spasms/tightness, cramping I would choose klonopin.hugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. To: MSersLife Sent: Thu, May 5, 2011 5:10:29 AMSubject: Re: klonopin or baclofen I looked these up, wow, not appealing. I have to suppose that one has to weight the issues the meds are suppose to alleviate against those it will initiate. I know they all have side effect warnings that may not occur, however, not a fan of meds here. I took Thorazine during both my pregnancies for extreme hyper-emisis (?) and have to say it changed my life and left me quite traumatized from the experiences. I won't go near any meds with "zine" in the name, nor will I give them to my pets which is often prescribed for them for anxiety. I found they are more upset at the lack of control they feel than if they just endured the stressor to begin with. bad stuff. could we hear from someone who's taken either of these? what exactly is spasticity with regards to ms? I think of a muscle spasm, like an eye twitch and not a cramp...perhaps my issues relating to tendons binding are actually spasms and I'm not using the right terms... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2011 Report Share Posted May 5, 2011 Hi Dee and WELCOME from Jackie in Oregon! I've taken both, and even at the lowest dosage of Bac it made my legs go weak, and it knocked me out, and the Klon did nothing. What works the best for me and I've been taking it for over 10 years is diazepam [valium], I take 2.5 mgs 3x's a day, more as needed, but usually I don't need more. Dr. Swank originally put me on it waaaaaay back in the '90's when he was my MS Dr. [he's passed now, but was a top notch researcher and devoted his life to finding a cure for MS] The Dr's now don't like to prescribe it as they say its addictive, but I don't ever feel like I need it for anything else but the muscle spasms. The Dr. I have now doesn't mind prescribing it. She's my PCP, so I don't know if a neurologist would be open to it. Blessings and Love, Jackie "Somebody has said there are only two kinds of people in the world. There are those who wake up in the morning and say, "Good morning, Lord," and there are those who wake up in the morning and say, "Good Lord, it's morning." Subject: RE: Re: klonopin or baclofenTo: mserslife Date: Thursday, May 5, 2011, 8:32 AM I've taken both klonopin & baclofen. I found that baclofen had no benefits for me. And, when I increased dosage, I got a bit paranoid and lost my appetite and was too tired. The klonopin helped a little. However, because both are "benzo" drugs, NO medicare prescription plans will cover them. So, for me, it's not worth the out-of-pocket costs to use them Dan U dao_nguu@... To: MSersLife From: squasch@...Date: Thu, 5 May 2011 05:10:29 -0700Subject: Re: klonopin or baclofen I looked these up, wow, not appealing. I have to suppose that one has to weight the issues the meds are suppose to alleviate against those it will initiate. I know they all have side effect warnings that may not occur, however, not a fan of meds here. I took Thorazine during both my pregnancies for extreme hyper-emisis (?) and have to say it changed my life and left me quite traumatized from the experiences. I won't go near any meds with "zine" in the name, nor will I give them to my pets which is often prescribed for them for anxiety. I found they are more upset at the lack of control they feel than if they just endured the stressor to begin with. bad stuff. could we hear from someone who's taken either of these? what exactly is spasticity with regards to ms? I think of a muscle spasm, like an eye twitch and not a cramp...perhaps my issues relating to tendons binding are actually spasms and I'm not using the right terms... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2011 Report Share Posted May 5, 2011 Hey Dan, you taught me something new. I had no idea that those meds were in the 'benzo' category. That's too bad your insurance won't cover it. How are you feeling these days? hugs, Kate To: mserslife Sent: Thu, May 5, 2011 11:32:35 AMSubject: RE: Re: klonopin or baclofen I've taken both klonopin & baclofen. I found that baclofen had no benefits for me. And, when I increased dosage, I got a bit paranoid and lost my appetite and was too tired. The klonopin helped a little. However, because both are "benzo" drugs, NO medicare prescription plans will cover them. So, for me, it's not worth the out-of-pocket costs to use them Dan U dao_nguu@... To: MSersLife From: squasch@...Date: Thu, 5 May 2011 05:10:29 -0700Subject: Re: klonopin or baclofen I looked these up, wow, not appealing. I have to suppose that one has to weight the issues the meds are suppose to alleviate against those it will initiate. I know they all have side effect warnings that may not occur, however, not a fan of meds here. I took Thorazine during both my pregnancies for extreme hyper-emisis (?) and have to say it changed my life and left me quite traumatized from the experiences. I won't go near any meds with "zine" in the name, nor will I give them to my pets which is often prescribed for them for anxiety. I found they are more upset at the lack of control they feel than if they just endured the stressor to begin with. bad stuff. could we hear from someone who's taken either of these? what exactly is spasticity with regards to ms? I think of a muscle spasm, like an eye twitch and not a cramp...perhaps my issues relating to tendons binding are actually spasms and I'm not using the right terms... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2011 Report Share Posted May 5, 2011 Hey, Jackie! I didn't know you and n had something in common! You both were patients of Dr. Swank. Small flippin' world! Gee, wouldn't that be cool if you both saw him the same day, and your paths crossed...I know that's unlikely, as well as corny to even consider, but I always think of silly stuff like that. Valium, huh? I wouldn't mind having that at my disposal. I don't think ANY of my docs would prescribe to me. Miss you! Will write soon! love you, Kate To: MSersLife Sent: Thu, May 5, 2011 1:58:41 PMSubject: RE: Re: klonopin or baclofen Hi Dee and WELCOME from Jackie in Oregon! I've taken both, and even at the lowest dosage of Bac it made my legs go weak, and it knocked me out, and the Klon did nothing. What works the best for me and I've been taking it for over 10 years is diazepam [valium], I take 2.5 mgs 3x's a day, more as needed, but usually I don't need more. Dr. Swank originally put me on it waaaaaay back in the '90's when he was my MS Dr. [he's passed now, but was a top notch researcher and devoted his life to finding a cure for MS] The Dr's now don't like to prescribe it as they say its addictive, but I don't ever feel like I need it for anything else but the muscle spasms. The Dr. I have now doesn't mind prescribing it. She's my PCP, so I don't know if a neurologist would be open to it. Blessings and Love, Jackie "Somebody has said there are only two kinds of people in the world. There are those who wake up in the morning and say, "Good morning, Lord," and there are those who wake up in the morning and say, "Good Lord, it's morning." Subject: RE: Re: klonopin or baclofenTo: mserslife Date: Thursday, May 5, 2011, 8:32 AM I've taken both klonopin & baclofen. I found that baclofen had no benefits for me. And, when I increased dosage, I got a bit paranoid and lost my appetite and was too tired. The klonopin helped a little. However, because both are "benzo" drugs, NO medicare prescription plans will cover them. So, for me, it's not worth the out-of-pocket costs to use them Dan U dao_nguu@... To: MSersLife From: squasch@...Date: Thu, 5 May 2011 05:10:29 -0700Subject: Re: klonopin or baclofen I looked these up, wow, not appealing. I have to suppose that one has to weight the issues the meds are suppose to alleviate against those it will initiate. I know they all have side effect warnings that may not occur, however, not a fan of meds here. I took Thorazine during both my pregnancies for extreme hyper-emisis (?) and have to say it changed my life and left me quite traumatized from the experiences. I won't go near any meds with "zine" in the name, nor will I give them to my pets which is often prescribed for them for anxiety. I found they are more upset at the lack of control they feel than if they just endured the stressor to begin with. bad stuff. could we hear from someone who's taken either of these? what exactly is spasticity with regards to ms? I think of a muscle spasm, like an eye twitch and not a cramp...perhaps my issues relating to tendons binding are actually spasms and I'm not using the right terms... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2011 Report Share Posted May 5, 2011 what are "benzo" drugs? because both are "benzo" drugs, NO medicare prescription plans will cover them. So, for me, it's not worth the out-of-pocket costs to use them Dan U dao_nguu@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2011 Report Share Posted May 5, 2011 thanks Jackie, I will ask at my next appt to try it. I've always stayed clear of the stuff figuring it would be lovely and I'd like it lol. Same with vicodin but neither have gotten me 'high' so to speak. vicodin dried me out badly so didn't bother with it after elbow surgery and valium was just a low dose to be still in the mri tube as my lower mri's kept being blurry from jumpy legs. My head got a bit warm briefly but no biggie so perhaps it will help me as well. DeeTo: MSersLife Sent: Thu, May 5, 2011 12:58:41 PMSubject: RE: Re: klonopin or baclofen Hi Dee and WELCOME from Jackie in Oregon! I've taken both, and even at the lowest dosage of Bac it made my legs go weak, and it knocked me out, and the Klon did nothing. What works the best for me and I've been taking it for over 10 years is diazepam [valium], I take 2.5 mgs 3x's a day, more as needed, but usually I don't need more. Dr. Swank originally put me on it waaaaaay back in the '90's when he was my MS Dr. [he's passed now, but was a top notch researcher and devoted his life to finding a cure for MS] The Dr's now don't like to prescribe it as they say its addictive, but I don't ever feel like I need it for anything else but the muscle spasms. The Dr. I have now doesn't mind prescribing it. She's my PCP, so I don't know if a neurologist would be open to it. Blessings and Love, Jackie "Somebody has said there are only two kinds of people in the world. There are those who wake up in the morning and say, "Good morning, Lord," and there are those who wake up in the morning and say, "Good Lord, it's morning." Subject: RE: Re: klonopin or baclofenTo: mserslife Date: Thursday, May 5, 2011, 8:32 AM I've taken both klonopin & baclofen. I found that baclofen had no benefits for me. And, when I increased dosage, I got a bit paranoid and lost my appetite and was too tired. The klonopin helped a little. However, because both are "benzo" drugs, NO medicare prescription plans will cover them. So, for me, it's not worth the out-of-pocket costs to use them Dan U dao_nguu@... To: MSersLife From: squasch@...Date: Thu, 5 May 2011 05:10:29 -0700Subject: Re: klonopin or baclofen I looked these up, wow, not appealing. I have to suppose that one has to weight the issues the meds are suppose to alleviate against those it will initiate. I know they all have side effect warnings that may not occur, however, not a fan of meds here. I took Thorazine during both my pregnancies for extreme hyper-emisis (?) and have to say it changed my life and left me quite traumatized from the experiences. I won't go near any meds with "zine" in the name, nor will I give them to my pets which is often prescribed for them for anxiety. I found they are more upset at the lack of control they feel than if they just endured the stressor to begin with. bad stuff. could we hear from someone who's taken either of these? what exactly is spasticity with regards to ms? I think of a muscle spasm, like an eye twitch and not a cramp...perhaps my issues relating to tendons binding are actually spasms and I'm not using the right terms... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2011 Report Share Posted May 5, 2011 http://en.wikipedia.org/wiki/List_of_benzodiazepines"Benzos" are a class of drugs and includes valium and clonazepam (Klonopin). SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. To: MSersLife Sent: Thu, May 5, 2011 11:44:38 AMSubject: Re: Re: klonopin or baclofen what are "benzo" drugs? because both are "benzo" drugs, NO medicare prescription plans will cover them. So, for me, it's not worth the out-of-pocket costs to use them Dan U dao_nguu@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2011 Report Share Posted May 6, 2011 DQ, I actually take two anti-seizure meds (Gabapentin & Keppra) as well as the baclofen... I never realized that I was having "nerve pain", until I described a "burning sensation" on my foot to the neurologist. She then told me that was "nerve pain".. I expected nerve pain to actually BE pain.. 300mg 3 times a day has taken care of the burning sensation, and my great toe playing what I call "reach for the stars".. The toe would just start trying to poke through the top of my shoe for no reason. The Gabapentin also relieved some of the "tingles" I have in my fingers and toes... Then I started to experience, what I would call a spasm or cramping in my leg, just above the ankle, maybe about 4 inches or so.. When it got really bad, I could actually run my finger down the divet between the shin bone & the calf muscle on the outside of my leg.. That's when the neurologist prescribed the Keppra... And that med took care of that.. Though he prescribed up to 2,000mg per day, I can only get away with 1,500 (500mg tablet 3 times a day).. if it's really really really bad, I will take the 4th before bed so it will relieve the pain so I can sleep, but I don't want to make a habit of taking that 4th pill often... Otherwise nobody wants to live with me.. and everyone is afraid to even speak to me.. I guess I get pretty nasty.. When told my neurologist that this muscle thing still continues somewhat, but that if he told me I had to take that 4th Keppra to alleviate that problem, was going to bring me to his house to live!.. LOL.. doctor upped my Baclofen to 60 mg per day.. taken 10mg, 20mg, 10mg, 20mg... and that has actually taken care of the problem without my having to take the 4th Keppra.. I've not noticed too many of the side-effects, other than wanting to nap a bit more often than usual.. but these too will pass with time on the meds... The benefits of these three drugs far outweigh the side-effects.. I'm not one who likes to take a whole ton of drugs.. I'd really prefer not to be taking any of them, but I can't live in pain every day all day either, so have given up on not taking them and trying to get by without... Being pain free is much better than the way it was before.. even if I get a little fuzzy from time to time.. or want to take a nap more often. Just a couple of days ago I started on the Ampyra.. and yup, I've noticed the headaches and the back pain, BUT.. I've also noticed, in the few days that I've been taking it, that I am able to stand upright for longer and longer each day.. and before too long we will be working on getting the muscle tone back so that I can once again be walking, at the very least with my walker, and at the very best without assistance once again... I'll live with the headache and back pain.. Tylenol helps control that (and I think part of the headache might be sinus' problems with the cold I have right now as well).. I am sooooooooo looking forward to being able to stand at the kitchen sink and wash a few dishes again (and I hate washing dishes!), and possibly keeping the house a little cleaner than it is now.. tries, but it's hard to work 40 hours a week, then come home and take care of the house, by yourself.. as well as cook the meals, feed the critters, do the laundry and all the stuff that goes with... so I'm not complaining about the mess.. but I am also looking forward to being able to help more and more around the house.. and possibly even going back to work if the Ampyra works as well as it does for some, and seems to be working for me already... As much as I dislike being dependent on these medications, and would much rather not be taking any of them.. I will continue to take them, and deal with the side-effects that might come with them [they do pass eventually, and even if they don't, the results of taking them are much better than being without them - life quality wise].. This is going to sound crude.. but... it's a matter of.... live 20 years miserable and in pain, or live 15 years being pretty much pain free and enjoying life.. I'll opt for the 15 years.. Hope this helps, and didn't put you off too much... HUGS |)onna I looked these up, wow, not appealing. I have to suppose that one has to weight the issues the meds are suppose to alleviate against those it will initiate. I know they all have side effect warnings that may not occur, however, not a fan of meds here. I took Thorazine during both my pregnancies for extreme hyper-emisis (?) and have to say it changed my life and left me quite traumatized from the experiences. I won't go near any meds with "zine" in the name, nor will I give them to my pets which is often prescribed for them for anxiety. I found they are more upset at the lack of control they feel than if they just endured the stressor to begin with. bad stuff. could we hear from someone who's taken either of these? what exactly is spasticity with regards to ms? I think of a muscle spasm, like an eye twitch and not a cramp...perhaps my issues relating to tendons binding are actually spasms and I'm not using the right terms... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2011 Report Share Posted May 6, 2011 Sharon, I think that the "But you don't look sick"..no.. that's not it.. Might have been the mssucks.. nope.. I found it again! the MS Perspective Kit here: http://www.dailystrength.org/c/Multiple_Sclerosis_MS/forum/1440030-ms-perspective-kit-wish I can't find the site where it was originally posted. I guess the guy who had that site, allowed his domain to lapse or something. But the description for spasticity on the above site, is great.. HUGS |)onna Spasms are sometimes twitches but are often a tightness in the muscles. It's hard to describe. Maybe someone else here can describe it better? Sometimes they are like charley horses only way, way worse. I have been on heavy meds at times (neurontin, klonopin, baclofen) but for over a year I have been med free except for my high blood pressure med and thyroid med. I think the klonopin was the easiest med I have taken for the cramping/spasms. if I had to take sometime again for the spasms/tightness, cramping I would choose klonopin. hugs Sharon This email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. From: D Q To: MSersLife Sent: Thu, May 5, 2011 5:10:29 AM Subject: Re: klonopin or baclofen I looked these up, wow, not appealing. I have to suppose that one has to weight the issues the meds are suppose to alleviate against those it will initiate. I know they all have side effect warnings that may not occur, however, not a fan of meds here. I took Thorazine during both my pregnancies for extreme hyper-emisis (?) and have to say it changed my life and left me quite traumatized from the experiences. I won't go near any meds with "zine" in the name, nor will I give them to my pets which is often prescribed for them for anxiety. I found they are more upset at the lack of control they feel than if they just endured the stressor to begin with. bad stuff. could we hear from someone who's taken either of these? what exactly is spasticity with regards to ms? I think of a muscle spasm, like an eye twitch and not a cramp...perhaps my issues relating to tendons binding are actually spasms and I'm not using the right terms... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2011 Report Share Posted May 6, 2011 Sharon, I think that the "But you don't look sick"..no.. that's not it.. Might have been the mssucks.. nope.. I found it again! the MS Perspective Kit here: http://www.dailystrength.org/c/Multiple_Sclerosis_MS/forum/1440030-ms-perspective-kit-wish I can't find the site where it was originally posted. I guess the guy who had that site, allowed his domain to lapse or something. But the description for spasticity on the above site, is great.. HUGS |)onna Spasms are sometimes twitches but are often a tightness in the muscles. It's hard to describe. Maybe someone else here can describe it better? Sometimes they are like charley horses only way, way worse. I have been on heavy meds at times (neurontin, klonopin, baclofen) but for over a year I have been med free except for my high blood pressure med and thyroid med. I think the klonopin was the easiest med I have taken for the cramping/spasms. if I had to take sometime again for the spasms/tightness, cramping I would choose klonopin. hugs Sharon This email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. From: D Q To: MSersLife Sent: Thu, May 5, 2011 5:10:29 AM Subject: Re: klonopin or baclofen I looked these up, wow, not appealing. I have to suppose that one has to weight the issues the meds are suppose to alleviate against those it will initiate. I know they all have side effect warnings that may not occur, however, not a fan of meds here. I took Thorazine during both my pregnancies for extreme hyper-emisis (?) and have to say it changed my life and left me quite traumatized from the experiences. I won't go near any meds with "zine" in the name, nor will I give them to my pets which is often prescribed for them for anxiety. I found they are more upset at the lack of control they feel than if they just endured the stressor to begin with. bad stuff. could we hear from someone who's taken either of these? what exactly is spasticity with regards to ms? I think of a muscle spasm, like an eye twitch and not a cramp...perhaps my issues relating to tendons binding are actually spasms and I'm not using the right terms... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2011 Report Share Posted May 6, 2011 Wow Donna, that is a lot of different meds~ it sounds like the keppra makes you hostile? but you're not aware? interesting. I've tried different allergy meds and many of them made me hostile and didn't do what I needed them to do so they were out. Today I was very tempted to try a valium to see if it would relax me and give me relief from these muscle spasm at my collar. with the stress of the day combined with allergy shots yesterday I am way hurting all over. Did you say you were doing cancer treatment on top of your ms? That was the one thing that clicked for me when reading that book I mentioned, The Chronic Illness Experience, and the magazine the arthritis foundation puts out...that ms is not exclusive, that we can have other issues/disorders/diseases etc. Did you always have the outlook you have? I found that this fall I couldn't even imagine living with such pain, with such limitations. I was very deep in sorrow. Some things passed, I found a counselor that is very focused, and have my husband for such a great example. I kept finding myself looking at the really old people and wondering what is it that motivates them? I was having (and probably still am) difficulty finding motivation. People say they want to be there to see their kids do this/that as they grow up and build their lives, and various other things...I just don't seem to key on that. I want to be but it's like not having an answer to a question. thanks for sharing you meds and experiences with them, I'm proud of you for being so positive and encouraging. Hope you were able to keep your food down for a longer time last night~Dee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2011 Report Share Posted May 6, 2011 Actually, it's Debbie that's going through the chemo and having trouble keeping food down.. And my thoughts & prayers are always with this mighty lady.. she definitely has the strength & courage that I wish I could muster. And yes, the Keppra did tend to make me a bit hostile, or at least that is what & my son Earl tell me. but only if I took the 4th pill every day.. go figure.. but then I've never done anything by the book in my life... tells me that phenylpropanolamine (sp?) in allergy/cold meds makes him quite violent actually.. so we read all labeling to keep that from happening to him as well. And yes, the books and articles are correct.. MS is not exclusive, and we often develop a 2nd autoimmune disease as well... You may also find, as time goes by, that the pain you're having right now, will go away.. and stay away until this time next year as well.. A whole lot of us have "seasonal things" go on the same time every year... like the change between winter & spring is usually pretty rough for me.. but the heat of summer will get me just as quick as well... I guess I've always had this attitude towards things.. I remember telling the X, years and years ago, that if it came to longevity or quality.. I'd take the quality.. Kind of sort of made the same deals when I was being diagnosed... "If I have the choice between a brain tumor and MS, I'll take the MS please".. then it was.. "I I have the choice between my legs and my hands, I'll keep my hands please"... so far I've gotten what I've asked.. except for the Avonex.. I didn't start to get the flu like symptoms until about 3 months into the injections.. and at the beginning I said something like.. well heck.. this is a piece of cake!... then I got lambasted with the side-effects.. bigtimerealbad! -- I do so love my Copaxone now.. lumps, bumps, swelling, sting and all that good stuff that goes with it... definitely a piece of cake compare to the Avonex.. Though a good friend has a sister who never ever ever had any of the side-effects from Avonex.. Oh honey, I think that you will find, the longer you deal with the MonSter, the rougher fall & winter will be.. need to lay in lots of Vitamin D for the winter months.. I spent the largest part of this past winter away from the group.. I wasn't fit company for man nor beast.. As people have been saying, the studies on our lack of Vitamin D seems to have a whole lot to do with Multiple Surprises.. and because a lot of us aren't in sunny Florida (Ahem.. Akiba).. we don't get the sunshine to absorb the Big "D"... and on top of that.. our movement is even more limited because of the weather.. We aren't about to go out in all that snow tooling around in our chairs or risk falling while wading through snow (even if the landing might be smoother than in the summer).. AND it does look quite dismal when you're first diagnosed too... I don't think it will be really all that long before you too start to develop our very strange sense of humor.. Having MS is a whole lot like being in a perpetual grieving situation.. Every little bit we experience or lose, starts the grieving process all over again.. all five stages of it.. I would almost swear though, that it will get better for you as time goes on.. and you will eventually learn to compensate for the things you find it difficult to get around right this minute.. except I still haven't learned to compensate for pulling a trash bag out of the trash can.. still have to turn it upside down into a new bag if the trash needs emptied.. Oh.. and I still can't get passed taking a hot bath.. I know I'm going to turn to rubber, but I just can't stick my bare buns in lukewarm water.. just ain't a gonna happen.. so if I have to get dressed up to go out.. I HAVE to start about 5 hours before time to leave and get my bath, so that I'll have recouped some control by the time I need to get dressed.. And it does help tremendously to have a husband or significant other.. or just somebody to hold you up and make you laugh when things get you down.. makes a habit of being a clown and it's never ever a dull moment around here... there's always something to keep me on my toes! And when I get really down.. I fire up my "attitude tunes" and listen to them.. a good one to listen to would be... well.. you might like is Baz Luhrman's Sunscreen here: This one always picks me up a bit.. then of course there are the songs like Tippin's "Kiss This".. and Underwood's "Before He Cheats".. and a few other with real "attitude".. definitely picks me up and calms me down.. but then I've always had a tremendous love of music.. HUGS |)onna Wow Donna, that is a lot of different meds~ it sounds like the keppra makes you hostile? but you're not aware? interesting. I've tried different allergy meds and many of them made me hostile and didn't do what I needed them to do so they were out. Today I was very tempted to try a valium to see if it would relax me and give me relief from these muscle spasm at my collar. with the stress of the day combined with allergy shots yesterday I am way hurting all over. Did you say you were doing cancer treatment on top of your ms? That was the one thing that clicked for me when reading that book I mentioned, The Chronic Illness Experience, and the magazine the arthritis foundation puts out...that ms is not exclusive, that we can have other issues/disorders/diseases etc. Did you always have the outlook you have? I found that this fall I couldn't even imagine living with such pain, with such limitations. I was very deep in sorrow. Some things passed, I found a counselor that is very focused, and have my husband for such a great example. I kept finding myself looking at the really old people and wondering what is it that motivates them? I was having (and probably still am) difficulty finding motivation. People say they want to be there to see their kids do this/that as they grow up and build their lives, and various other things...I just don't seem to key on that. I want to be but it's like not having an answer to a question. thanks for sharing you meds and experiences with them, I'm proud of you for being so positive and encouraging. Hope you were able to keep your food down for a longer time last night~ Dee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2011 Report Share Posted May 7, 2011 That is a lot of interesting tid bits, thank you so much Donna. Sorry for mixing you and Debbi up, still getting use to who is who. I was curious, you mentioned hot baths...you like them or don't? I don't like the cold water, seems to hurt. However, heat doesn't seem to bother my ms stuff that I've noticed. I have a hot tub that I sit in on occasion and run about 101-102, 103 if I am in a spell of being cold. love love love it. I also have a heated mattress pad that I use year around. Avonex effects, wow three months before any? and none for this other person? must be nice. I had them for 3 out of 4 shots for 6 years. I just was aging by the day it seemed and was so surprised that my mri's looked "good" according to my neuro and radiologist, nothing new. So why did I feel so terrible I asked...it's the avonex. She also mentioned perhaps I merely had a case of transverse mylitis and not ms, no way to tell. She recommended I not stop, and if I insisted that I at least continue to see her. Instead I fell into denial and euphoria of feeling so much better without the avonex, at least for a year and a half. You know I read a book with a name like "coffee in my cereal" or something about a lady who woke up with no walking or impaired vision perhaps. She was so funny in her story about trying to get a sexy little lingerie outfit on to spend a romantic time with her husband and actually got stuck in it wrong and fell over, her husband coming to help her with them collapsing in laughter at the situation. My hope is to not be 'preoccupied' with the symptoms that come/go and have it be a topic of conversation. My husband doesn't know what to do or how to help, which he can't. I'd like to not make mention of it unless something comes around that I am unable to do or not up to doing. Part of me still avoids and is in denial~ after all, I only had a few lesions and one "o" band in my spinal tap...it is so inconvenient~How is it we can take vitamin D but can only get it from the sun? isn't that a contradiction? is the vitamin D synthetic and how is it utilized if we are suppose to get it from the sun but take it orally...Thank you again Donna for your sharing, is very interesting. May I ask how old you are and how long you've dealt with ms?DeeFrom: |)onna To: MSersLife Sent: Fri, May 6, 2011 8:12:43 PMSubject: Re: Re: klonopin or baclofen Actually, it's Debbie that's going through the chemo and having trouble keeping food down.. And my thoughts & prayers are always with this mighty lady.. she definitely has the strength & courage that I wish I could muster. And yes, the Keppra did tend to make me a bit hostile, or at least that is what & my son Earl tell me. but only if I took the 4th pill every day.. go figure.. but then I've never done anything by the book in my life... tells me that phenylpropanolamine (sp?) in allergy/cold meds makes him quite violent actually.. so we read all labeling to keep that from happening to him as well. And yes, the books and articles are correct.. MS is not exclusive, and we often develop a 2nd autoimmune disease as well... You may also find, as time goes by, that the pain you're having right now, will go away.. and stay away until this time next year as well.. A whole lot of us have "seasonal things" go on the same time every year... like the change between winter & spring is usually pretty rough for me.. but the heat of summer will get me just as quick as well... I guess I've always had this attitude towards things.. I remember telling the X, years and years ago, that if it came to longevity or quality.. I'd take the quality.. Kind of sort of made the same deals when I was being diagnosed... "If I have the choice between a brain tumor and MS, I'll take the MS please".. then it was.. "I I have the choice between my legs and my hands, I'll keep my hands please"... so far I've gotten what I've asked.. except for the Avonex.. I didn't start to get the flu like symptoms until about 3 months into the injections.. and at the beginning I said something like.. well heck.. this is a piece of cake!... then I got lambasted with the side-effects.. bigtimerealbad! -- I do so love my Copaxone now.. lumps, bumps, swelling, sting and all that good stuff that goes with it... definitely a piece of cake compare to the Avonex.. Though a good friend has a sister who never ever ever had any of the side-effects from Avonex.. Oh honey, I think that you will find, the longer you deal with the MonSter, the rougher fall & winter will be.. need to lay in lots of Vitamin D for the winter months.. I spent the largest part of this past winter away from the group.. I wasn't fit company for man nor beast.. As people have been saying, the studies on our lack of Vitamin D seems to have a whole lot to do with Multiple Surprises.. and because a lot of us aren't in sunny Florida (Ahem.. Akiba).. we don't get the sunshine to absorb the Big "D"... and on top of that.. our movement is even more limited because of the weather.. We aren't about to go out in all that snow tooling around in our chairs or risk falling while wading through snow (even if the landing might be smoother than in the summer).. AND it does look quite dismal when you're first diagnosed too... I don't think it will be really all that long before you too start to develop our very strange sense of humor.. Having MS is a whole lot like being in a perpetual grieving situation.. Every little bit we experience or lose, starts the grieving process all over again.. all five stages of it.. I would almost swear though, that it will get better for you as time goes on.. and you will eventually learn to compensate for the things you find it difficult to get around right this minute.. except I still haven't learned to compensate for pulling a trash bag out of the trash can.. still have to turn it upside down into a new bag if the trash needs emptied.. Oh.. and I still can't get passed taking a hot bath.. I know I'm going to turn to rubber, but I just can't stick my bare buns in lukewarm water.. just ain't a gonna happen.. so if I have to get dressed up to go out.. I HAVE to start about 5 hours before time to leave and get my bath, so that I'll have recouped some control by the time I need to get dressed.. And it does help tremendously to have a husband or significant other.. or just somebody to hold you up and make you laugh when things get you down.. makes a habit of being a clown and it's never ever a dull moment around here... there's always something to keep me on my toes! And when I get really down.. I fire up my "attitude tunes" and listen to them.. a good one to listen to would be... well.. you might like is Baz Luhrman's Sunscreen here: This one always picks me up a bit.. then of course there are the songs like Tippin's "Kiss This".. and Underwood's "Before He Cheats".. and a few other with real "attitude".. definitely picks me up and calms me down.. but then I've always had a tremendous love of music.. HUGS |)onna Wow Donna, that is a lot of different meds~ it sounds like the keppra makes you hostile? but you're not aware? interesting. I've tried different allergy meds and many of them made me hostile and didn't do what I needed them to do so they were out. Today I was very tempted to try a valium to see if it would relax me and give me relief from these muscle spasm at my collar. with the stress of the day combined with allergy shots yesterday I am way hurting all over. Did you say you were doing cancer treatment on top of your ms? That was the one thing that clicked for me when reading that book I mentioned, The Chronic Illness Experience, and the magazine the arthritis foundation puts out...that ms is not exclusive, that we can have other issues/disorders/diseases etc. Did you always have the outlook you have? I found that this fall I couldn't even imagine living with such pain, with such limitations. I was very deep in sorrow. Some things passed, I found a counselor that is very focused, and have my husband for such a great example. I kept finding myself looking at the really old people and wondering what is it that motivates them? I was having (and probably still am) difficulty finding motivation. People say they want to be there to see their kids do this/that as they grow up and build their lives, and various other things...I just don't seem to key on that. I want to be but it's like not having an answer to a question. thanks for sharing you meds and experiences with them, I'm proud of you for being so positive and encouraging. Hope you were able to keep your food down for a longer time last night~ Dee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2011 Report Share Posted May 7, 2011 I absolutely LOVE hot baths, use to take long hot bubble baths & read a book. I can't spend as much time in the tub anymore, but I still take hot baths. I love hot tubs as well, but someone would have to drain it and pour me out when I finished in there. I still take a hot bath whenever I ache. I guess the easiest way to stop a muscle in spasm, for me, is to turn it to jelly! The Avonex? The side-effects didn't start until about three months. I started injecting in September of 2000, by the end of November I just couldn't continue to work, because instead of the side-effects only lasting 24-36 hours for me, they lasted six days! I'd just be feeling better when it was time to inject again. While off work on the FMLA, I managed to figure out just how to get the side-effects to drop back to the "norm".. I started at 2 p.m. taking 4 Advil, then again at 4pm, 6pm, 8pm, inject at 9pm, then another 4 Advil at 10pm.. by 11pm the aches, chills & fever would start. I'd also drink about a gallon of water during the time I was taking all those Advil (maybe that's the reason I didn't cause myself liver damage?).. But by the next morning I could then get away with 2 Advil every 4 hours to keep the side-effects to a minimum. The only reason I kept putting myself through that was because 4 of the 7 lesions had resolved in the first 4 months on Avonex... Soooooo I figured that it was working, and if it was working then I'd keep on keeping on. 4 years into the Avonex, even paper cuts started to get infected! And then when I read, in the insert, that they'd found that Avonex had caused Congestive Heart Failure in a few people with no family history of heart problems I KNEW I had to stop. My paternal grandmother died of CHF and my father was diagnosed with it as well.. I figured that if I didn't already have it, I wasn't going to keep risking it. I asked my neurologist (actually he was a meuron = moron + neurologist) for Copaxone before I took myself off the Avonex, and he refused. So I stopped seeing him... so long as he continued to call in my prescriptions for Baclofen, Xanax (when needed - for panic attacks) and Provigil when the fatigue attacks would start, I figured all was kewl.. When I called for refills, mostly for the Xanax [my son had been killed in a head-on collision on May 30, 2006] He refused to call in any prescription, except the Xanax until I came in to see him again. I made an appointment for June [but never had to touch the Xanax through the whole ordeal of funeral arrangements and stuff]. He sent me for a new MRI, and the results were that I had new lesions bilaterally. He insisted that I be on something, and then started to tick off the things I wouldn't take.. LOL.. When he finally hit on Copaxone being the only thing left [i had been waiting for Tysabri, but only by a different name then, but it was pulled from the market almost faster than it was put on] I looked at him and, being the smarta$$ that I can be, said "BINGO".. I asked you for that TWO years ago.. I waited until I got the authorization to go through (took until October for the insurance company to approve it.. they said they never got the forms..).. Once I had the script and started on the Copaxone, I switched to the Neurology group that I'm with now.. Had to work through 2 other neurologists until Doctor Galen had an opening -- he's one of the two leading neurologists in SWPA specializing in MS -- Dr. Rock Heyman is the other -- I only regret not starting with them to begin with when I was diagnosed. I don't believe Doc would have poo-poohed away the side-effects of the Avonex... OH.. I fully understand the humor in the sexy lingerie.. I was still a size 12-13, and I hit 's Secret.... bought sexy black lace push up bra and a garter belt and either black fishnet stockings or black hose.. Also bought this low cut, very short, very tight black dress with silver sparkly things all over it.. Fixed my hair, put on my make up.. Drove to where we worked, picked up after he finished his shift, came home.. stepped out of the car, took three or four steps toward the apartment and promptly fell off my high heels!!!! So much for my "romantic night".. We spent the rest of it in the Emergency Room, having x-rays & being set up with a pair of crutches! I think most of us try to not be pre-occupied with the symptoms, and we just keep plugging away at trying to be as normal as we possibly can.. and enjoying life to it's fullest as best we can. And we do mostly talk about other things than our symptoms... but we still share and learn a whole lot from each other.. I actually didn't know that I was having double vision. I actually thought that double vision was seeing two of everything! Until I mentioned, one time, that my eyes felt like they kept trying to cross all on their own.. And that's when Sharon told me that what I was experiencing WAS double vision.. And I believe that nerve pain was actually "pain".. never realized that the burning sensation on my foot was nerve pain either... We can learn from each, and it really does help to have this great family who understands all the crap we go through living with MS. Vitamin D... studies have shown that MS is more prevalent above the 17th (I think it is.. my memory sometimes runs out my ear) parallel. The further above the 17th the higher the chance of developing MS. I guess that's what started some research into the Vitamin D thing. And I read somewhere that those of us who have MS, don't have the right levels of D in our system. Vitamin D also comes from sunshine, so we can absorb it through our skin.. I can only say that if I can get outside and sit in the sun for a bit each day during the summer, I feel sooooo much better! It's all quite confusing to me.. I do know that we can, and as many have mentioned, take Vitamin D supplements that will help tremendously with things.. I know that it helps me during the winter, when I'm taking it, to stop the "cabin fever", "winter blues" type thing... Now.. as for me.. I'm now 52 years old. I was diagnosed in August/September of 2000, but medical history suggests that I had already been living with MS for at least 10 years prior to being diagnosed. I've had "symptoms" that could and were contributed to other things... None of the doctors I saw for any of the problems put any of it together. It was when I was talking to a very dear friend, who also had MS, and we were discussing some of the things going on with me, that he said... "I'm pretty sure you've got MS, but before you actively seek a diagnosis, you want to get all your ducks in a row".. meaning long-term disability insurance, life insurance and all that kind of good stuff, because I wouldn't be able to get any of that after I was diagnosed, at least not at a price I could afford. He was correct in his assumption. Thinking back, I'm pretty sure that I also went through a stage of denial, but I did take tremendous pleasure in pointing out to very rude people that what they think they see isn't actually what they are seeing.... We stopped in a tobacco store to pick up a carton of cigarettes one time. When I stood back up from leaning over to pick up the carton, I stumbled. The lady behind the counter said something along the order of.. "It's a little bit early to be drinking isn't it?".. to which I snidely replied... "It would be if I were, but I wasn't, I have MS!"... She didn't know what to say, and I'm pretty sure that she was wishing that the floor would just open up and swallow her whole at that point in time. Here's to hoping that your night was restful and that your day is pleasant.. HUGS |)onna That is a lot of interesting tid bits, thank you so much Donna. Sorry for mixing you and Debbi up, still getting use to who is who. I was curious, you mentioned hot baths...you like them or don't? I don't like the cold water, seems to hurt. However, heat doesn't seem to bother my ms stuff that I've noticed. I have a hot tub that I sit in on occasion and run about 101-102, 103 if I am in a spell of being cold. love love love it. I also have a heated mattress pad that I use year around. Avonex effects, wow three months before any? and none for this other person? must be nice. I had them for 3 out of 4 shots for 6 years. I just was aging by the day it seemed and was so surprised that my mri's looked "good" according to my neuro and radiologist, nothing new. So why did I feel so terrible I asked...it's the avonex. She also mentioned perhaps I merely had a case of transverse mylitis and not ms, no way to tell. She recommended I not stop, and if I insisted that I at least continue to see her. Instead I fell into denial and euphoria of feeling so much better without the avonex, at least for a year and a half. You know I read a book with a name like "coffee in my cereal" or something about a lady who woke up with no walking or impaired vision perhaps. She was so funny in her story about trying to get a sexy little lingerie outfit on to spend a romantic time with her husband and actually got stuck in it wrong and fell over, her husband coming to help her with them collapsing in laughter at the situation. My hope is to not be 'preoccupied' with the symptoms that come/go and have it be a topic of conversation. My husband doesn't know what to do or how to help, which he can't. I'd like to not make mention of it unless something comes around that I am unable to do or not up to doing. Part of me still avoids and is in denial~ after all, I only had a few lesions and one "o" band in my spinal tap...it is so inconvenient~ How is it we can take vitamin D but can only get it from the sun? isn't that a contradiction? is the vitamin D synthetic and how is it utilized if we are suppose to get it from the sun but take it orally... Thank you again Donna for your sharing, is very interesting. May I ask how old you are and how long you've dealt with ms? Dee _,___ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2011 Report Share Posted May 7, 2011 okay, poopoohed is one of my faaavorite phrases to use...I had to sign a paper for my son in early high school about rules of being considerate of other student's thoughts and such, was a debate class or something, and I wrote next to that part real big, "no poo-pooing" in which when I gave it back he replied "thanks mom, I have to turn this in~" You have such a great sense of humorDonna! love the sexy night that wasn't lol.Your ms sounds really active. Mine is not really so I am very sorry for complaining...boo for avonex too! I have read about the location you live being a switch/trigger...also chicken pox, which I had when I was 19, grew up east of sacramento, ca near yosemite. My gf around the corner has ms with optic neur. and grew up in Fresno, ca. though I don't recall her ch pox status. interesting. all the different switches that have to be flipped that may make ms begin. It's almost as though perhaps you could have prevented it somehow? hrmph. Well, I am off to start my day again, out into the ugly world of the public crowds. Typically that isn't where I chose to be but it cannot always be avoided. Hugs to you! thank you for lifting my spirits~To: MSersLife Sent: Sat, May 7, 2011 9:12:53 AMSubject: Re: Re: klonopin or baclofen I absolutely LOVE hot baths, use to take long hot bubble baths & read a book. I can't spend as much time in the tub anymore, but I still take hot baths. I love hot tubs as well, but someone would have to drain it and pour me out when I finished in there. I still take a hot bath whenever I ache. I guess the easiest way to stop a muscle in spasm, for me, is to turn it to jelly! The Avonex? The side-effects didn't start until about three months. I started injecting in September of 2000, by the end of November I just couldn't continue to work, because instead of the side-effects only lasting 24-36 hours for me, they lasted six days! I'd just be feeling better when it was time to inject again. While off work on the FMLA, I managed to figure out just how to get the side-effects to drop back to the "norm".. I started at 2 p.m. taking 4 Advil, then again at 4pm, 6pm, 8pm, inject at 9pm, then another 4 Advil at 10pm.. by 11pm the aches, chills & fever would start. I'd also drink about a gallon of water during the time I was taking all those Advil (maybe that's the reason I didn't cause myself liver damage?).. But by the next morning I could then get away with 2 Advil every 4 hours to keep the side-effects to a minimum. The only reason I kept putting myself through that was because 4 of the 7 lesions had resolved in the first 4 months on Avonex... Soooooo I figured that it was working, and if it was working then I'd keep on keeping on. 4 years into the Avonex, even paper cuts started to get infected! And then when I read, in the insert, that they'd found that Avonex had caused Congestive Heart Failure in a few people with no family history of heart problems I KNEW I had to stop. My paternal grandmother died of CHF and my father was diagnosed with it as well.. I figured that if I didn't already have it, I wasn't going to keep risking it. I asked my neurologist (actually he was a meuron = moron + neurologist) for Copaxone before I took myself off the Avonex, and he refused. So I stopped seeing him... so long as he continued to call in my prescriptions for Baclofen, Xanax (when needed - for panic attacks) and Provigil when the fatigue attacks would start, I figured all was kewl.. When I called for refills, mostly for the Xanax [my son had been killed in a head-on collision on May 30, 2006] He refused to call in any prescription, except the Xanax until I came in to see him again. I made an appointment for June [but never had to touch the Xanax through the whole ordeal of funeral arrangements and stuff]. He sent me for a new MRI, and the results were that I had new lesions bilaterally. He insisted that I be on something, and then started to tick off the things I wouldn't take.. LOL.. When he finally hit on Copaxone being the only thing left [i had been waiting for Tysabri, but only by a different name then, but it was pulled from the market almost faster than it was put on] I looked at him and, being the smarta$$ that I can be, said "BINGO".. I asked you for that TWO years ago.. I waited until I got the authorization to go through (took until October for the insurance company to approve it.. they said they never got the forms..).. Once I had the script and started on the Copaxone, I switched to the Neurology group that I'm with now.. Had to work through 2 other neurologists until Doctor Galen had an opening -- he's one of the two leading neurologists in SWPA specializing in MS -- Dr. Rock Heyman is the other -- I only regret not starting with them to begin with when I was diagnosed. I don't believe Doc would have poo-poohed away the side-effects of the Avonex... OH.. I fully understand the humor in the sexy lingerie.. I was still a size 12-13, and I hit 's Secret.... bought sexy black lace push up bra and a garter belt and either black fishnet stockings or black hose.. Also bought this low cut, very short, very tight black dress with silver sparkly things all over it.. Fixed my hair, put on my make up.. Drove to where we worked, picked up after he finished his shift, came home.. stepped out of the car, took three or four steps toward the apartment and promptly fell off my high heels!!!! So much for my "romantic night".. We spent the rest of it in the Emergency Room, having x-rays & being set up with a pair of crutches! I think most of us try to not be pre-occupied with the symptoms, and we just keep plugging away at trying to be as normal as we possibly can.. and enjoying life to it's fullest as best we can. And we do mostly talk about other things than our symptoms... but we still share and learn a whole lot from each other.. I actually didn't know that I was having double vision. I actually thought that double vision was seeing two of everything! Until I mentioned, one time, that my eyes felt like they kept trying to cross all on their own.. And that's when Sharon told me that what I was experiencing WAS double vision.. And I believe that nerve pain was actually "pain".. never realized that the burning sensation on my foot was nerve pain either... We can learn from each, and it really does help to have this great family who understands all the crap we go through living with MS. Vitamin D... studies have shown that MS is more prevalent above the 17th (I think it is.. my memory sometimes runs out my ear) parallel. The further above the 17th the higher the chance of developing MS. I guess that's what started some research into the Vitamin D thing. And I read somewhere that those of us who have MS, don't have the right levels of D in our system. Vitamin D also comes from sunshine, so we can absorb it through our skin.. I can only say that if I can get outside and sit in the sun for a bit each day during the summer, I feel sooooo much better! It's all quite confusing to me.. I do know that we can, and as many have mentioned, take Vitamin D supplements that will help tremendously with things.. I know that it helps me during the winter, when I'm taking it, to stop the "cabin fever", "winter blues" type thing... Now.. as for me.. I'm now 52 years old. I was diagnosed in August/September of 2000, but medical history suggests that I had already been living with MS for at least 10 years prior to being diagnosed. I've had "symptoms" that could and were contributed to other things... None of the doctors I saw for any of the problems put any of it together. It was when I was talking to a very dear friend, who also had MS, and we were discussing some of the things going on with me, that he said... "I'm pretty sure you've got MS, but before you actively seek a diagnosis, you want to get all your ducks in a row".. meaning long-term disability insurance, life insurance and all that kind of good stuff, because I wouldn't be able to get any of that after I was diagnosed, at least not at a price I could afford. He was correct in his assumption. Thinking back, I'm pretty sure that I also went through a stage of denial, but I did take tremendous pleasure in pointing out to very rude people that what they think they see isn't actually what they are seeing.... We stopped in a tobacco store to pick up a carton of cigarettes one time. When I stood back up from leaning over to pick up the carton, I stumbled. The lady behind the counter said something along the order of.. "It's a little bit early to be drinking isn't it?".. to which I snidely replied... "It would be if I were, but I wasn't, I have MS!"... She didn't know what to say, and I'm pretty sure that she was wishing that the floor would just open up and swallow her whole at that point in time. Here's to hoping that your night was restful and that your day is pleasant.. HUGS |)onna That is a lot of interesting tid bits, thank you so much Donna. Sorry for mixing you and Debbi up, still getting use to who is who. I was curious, you mentioned hot baths...you like them or don't? I don't like the cold water, seems to hurt. However, heat doesn't seem to bother my ms stuff that I've noticed. I have a hot tub that I sit in on occasion and run about 101-102, 103 if I am in a spell of being cold. love love love it. I also have a heated mattress pad that I use year around. Avonex effects, wow three months before any? and none for this other person? must be nice. I had them for 3 out of 4 shots for 6 years. I just was aging by the day it seemed and was so surprised that my mri's looked "good" according to my neuro and radiologist, nothing new. So why did I feel so terrible I asked...it's the avonex. She also mentioned perhaps I merely had a case of transverse mylitis and not ms, no way to tell. She recommended I not stop, and if I insisted that I at least continue to see her. Instead I fell into denial and euphoria of feeling so much better without the avonex, at least for a year and a half. You know I read a book with a name like "coffee in my cereal" or something about a lady who woke up with no walking or impaired vision perhaps. She was so funny in her story about trying to get a sexy little lingerie outfit on to spend a romantic time with her husband and actually got stuck in it wrong and fell over, her husband coming to help her with them collapsing in laughter at the situation. My hope is to not be 'preoccupied' with the symptoms that come/go and have it be a topic of conversation. My husband doesn't know what to do or how to help, which he can't. I'd like to not make mention of it unless something comes around that I am unable to do or not up to doing. Part of me still avoids and is in denial~ after all, I only had a few lesions and one "o" band in my spinal tap...it is so inconvenient~ How is it we can take vitamin D but can only get it from the sun? isn't that a contradiction? is the vitamin D synthetic and how is it utilized if we are suppose to get it from the sun but take it orally... Thank you again Donna for your sharing, is very interesting. May I ask how old you are and how long you've dealt with ms? Dee _,___ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2011 Report Share Posted May 7, 2011 That's a good one, isn't it? Thanks for the reminder (and the link:)hugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. To: MSersLife Sent: Fri, May 6, 2011 9:08:54 AMSubject: Re: Re: klonopin or baclofen Sharon, I think that the "But you don't look sick"..no.. that's not it.. Might have been the mssucks.. nope.. I found it again! the MS Perspective Kit here: http://www.dailystrength.org/c/Multiple_Sclerosis_MS/forum/1440030-ms-perspective-kit-wish I can't find the site where it was originally posted. I guess the guy who had that site, allowed his domain to lapse or something. But the description for spasticity on the above site, is great.. HUGS |)onna Spasms are sometimes twitches but are often a tightness in the muscles. It's hard to describe. Maybe someone else here can describe it better? Sometimes they are like charley horses only way, way worse. I have been on heavy meds at times (neurontin, klonopin, baclofen) but for over a year I have been med free except for my high blood pressure med and thyroid med. I think the klonopin was the easiest med I have taken for the cramping/spasms. if I had to take sometime again for the spasms/tightness, cramping I would choose klonopin. hugs Sharon This email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. From: D Q To: MSersLife Sent: Thu, May 5, 2011 5:10:29 AM Subject: Re: klonopin or baclofen I looked these up, wow, not appealing. I have to suppose that one has to weight the issues the meds are suppose to alleviate against those it will initiate. I know they all have side effect warnings that may not occur, however, not a fan of meds here. I took Thorazine during both my pregnancies for extreme hyper-emisis (?) and have to say it changed my life and left me quite traumatized from the experiences. I won't go near any meds with "zine" in the name, nor will I give them to my pets which is often prescribed for them for anxiety. I found they are more upset at the lack of control they feel than if they just endured the stressor to begin with. bad stuff. could we hear from someone who's taken either of these? what exactly is spasticity with regards to ms? I think of a muscle spasm, like an eye twitch and not a cramp...perhaps my issues relating to tendons binding are actually spasms and I'm not using the right terms... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2011 Report Share Posted May 7, 2011 I love your take on things Donna. LOVE IT! I agree on the grieving process. Every time something "new" happens or something old comes back, I grieve. Tonight just reading what you wrote about grieving I got all teary. I hate that! What a big cry baby, huh? lol SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. To: MSersLife Sent: Fri, May 6, 2011 6:12:43 PMSubject: Re: Re: klonopin or baclofen Actually, it's Debbie that's going through the chemo and having trouble keeping food down.. And my thoughts & prayers are always with this mighty lady.. she definitely has the strength & courage that I wish I could muster. And yes, the Keppra did tend to make me a bit hostile, or at least that is what & my son Earl tell me. but only if I took the 4th pill every day.. go figure.. but then I've never done anything by the book in my life... tells me that phenylpropanolamine (sp?) in allergy/cold meds makes him quite violent actually.. so we read all labeling to keep that from happening to him as well. And yes, the books and articles are correct.. MS is not exclusive, and we often develop a 2nd autoimmune disease as well... You may also find, as time goes by, that the pain you're having right now, will go away.. and stay away until this time next year as well.. A whole lot of us have "seasonal things" go on the same time every year... like the change between winter & spring is usually pretty rough for me.. but the heat of summer will get me just as quick as well... I guess I've always had this attitude towards things.. I remember telling the X, years and years ago, that if it came to longevity or quality.. I'd take the quality.. Kind of sort of made the same deals when I was being diagnosed... "If I have the choice between a brain tumor and MS, I'll take the MS please".. then it was.. "I I have the choice between my legs and my hands, I'll keep my hands please"... so far I've gotten what I've asked.. except for the Avonex.. I didn't start to get the flu like symptoms until about 3 months into the injections.. and at the beginning I said something like.. well heck.. this is a piece of cake!... then I got lambasted with the side-effects.. bigtimerealbad! -- I do so love my Copaxone now.. lumps, bumps, swelling, sting and all that good stuff that goes with it... definitely a piece of cake compare to the Avonex.. Though a good friend has a sister who never ever ever had any of the side-effects from Avonex.. Oh honey, I think that you will find, the longer you deal with the MonSter, the rougher fall & winter will be.. need to lay in lots of Vitamin D for the winter months.. I spent the largest part of this past winter away from the group.. I wasn't fit company for man nor beast.. As people have been saying, the studies on our lack of Vitamin D seems to have a whole lot to do with Multiple Surprises.. and because a lot of us aren't in sunny Florida (Ahem.. Akiba).. we don't get the sunshine to absorb the Big "D"... and on top of that.. our movement is even more limited because of the weather.. We aren't about to go out in all that snow tooling around in our chairs or risk falling while wading through snow (even if the landing might be smoother than in the summer).. AND it does look quite dismal when you're first diagnosed too... I don't think it will be really all that long before you too start to develop our very strange sense of humor.. Having MS is a whole lot like being in a perpetual grieving situation.. Every little bit we experience or lose, starts the grieving process all over again.. all five stages of it.. I would almost swear though, that it will get better for you as time goes on.. and you will eventually learn to compensate for the things you find it difficult to get around right this minute.. except I still haven't learned to compensate for pulling a trash bag out of the trash can.. still have to turn it upside down into a new bag if the trash needs emptied.. Oh.. and I still can't get passed taking a hot bath.. I know I'm going to turn to rubber, but I just can't stick my bare buns in lukewarm water.. just ain't a gonna happen.. so if I have to get dressed up to go out.. I HAVE to start about 5 hours before time to leave and get my bath, so that I'll have recouped some control by the time I need to get dressed.. And it does help tremendously to have a husband or significant other.. or just somebody to hold you up and make you laugh when things get you down.. makes a habit of being a clown and it's never ever a dull moment around here... there's always something to keep me on my toes! And when I get really down.. I fire up my "attitude tunes" and listen to them.. a good one to listen to would be... well.. you might like is Baz Luhrman's Sunscreen here: This one always picks me up a bit.. then of course there are the songs like Tippin's "Kiss This".. and Underwood's "Before He Cheats".. and a few other with real "attitude".. definitely picks me up and calms me down.. but then I've always had a tremendous love of music.. HUGS |)onna Wow Donna, that is a lot of different meds~ it sounds like the keppra makes you hostile? but you're not aware? interesting. I've tried different allergy meds and many of them made me hostile and didn't do what I needed them to do so they were out. Today I was very tempted to try a valium to see if it would relax me and give me relief from these muscle spasm at my collar. with the stress of the day combined with allergy shots yesterday I am way hurting all over. Did you say you were doing cancer treatment on top of your ms? That was the one thing that clicked for me when reading that book I mentioned, The Chronic Illness Experience, and the magazine the arthritis foundation puts out...that ms is not exclusive, that we can have other issues/disorders/diseases etc. Did you always have the outlook you have? I found that this fall I couldn't even imagine living with such pain, with such limitations. I was very deep in sorrow. Some things passed, I found a counselor that is very focused, and have my husband for such a great example. I kept finding myself looking at the really old people and wondering what is it that motivates them? I was having (and probably still am) difficulty finding motivation. People say they want to be there to see their kids do this/that as they grow up and build their lives, and various other things...I just don't seem to key on that. I want to be but it's like not having an answer to a question. thanks for sharing you meds and experiences with them, I'm proud of you for being so positive and encouraging. Hope you were able to keep your food down for a longer time last night~ Dee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2011 Report Share Posted May 10, 2011 Oh dear girl... I'm sorry I got you all teared up with my description of grieving.. But you've got the TN going again, and that would have me sobbing like a baby in a corner somewhere.. I can't stand facial/mouth/ear pain.. I'd rather have a couple more 8 pound plus babies!!! Or for that matter.. as I said when they removed the staples from the incision, following the bone graft surgery.. I'd rather have (forgive my uncouthness) every one of my pubic hairs pulled out one by one with a pair of tweezers than have those staples removed again!!! Nope.. you're not a cry baby.. I don't believe that for a second! HUGS |)onna I love your take on things Donna. LOVE IT! I agree on the grieving process. Every time something "new" happens or something old comes back, I grieve. Tonight just reading what you wrote about grieving I got all teary. I hate that! What a big cry baby, huh? lol Sharon This email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. From: |)onna To: MSersLife Sent: Fri, May 6, 2011 6:12:43 PM Subject: Re: Re: klonopin or baclofen Actually, it's Debbie that's going through the chemo and having trouble keeping food down.. And my thoughts & prayers are always with this mighty lady.. she definitely has the strength & courage that I wish I could muster. And yes, the Keppra did tend to make me a bit hostile, or at least that is what & my son Earl tell me. but only if I took the 4th pill every day.. go figure.. but then I've never done anything by the book in my life... tells me that phenylpropanolamine (sp?) in allergy/cold meds makes him quite violent actually.. so we read all labeling to keep that from happening to him as well. And yes, the books and articles are correct.. MS is not exclusive, and we often develop a 2nd autoimmune disease as well... You may also find, as time goes by, that the pain you're having right now, will go away.. and stay away until this time next year as well.. A whole lot of us have "seasonal things" go on the same time every year... like the change between winter & spring is usually pretty rough for me.. but the heat of summer will get me just as quick as well... I guess I've always had this attitude towards things.. I remember telling the X, years and years ago, that if it came to longevity or quality.. I'd take the quality.. Kind of sort of made the same deals when I was being diagnosed... "If I have the choice between a brain tumor and MS, I'll take the MS please".. then it was.. "I I have the choice between my legs and my hands, I'll keep my hands please"... so far I've gotten what I've asked.. except for the Avonex.. I didn't start to get the flu like symptoms until about 3 months into the injections.. and at the beginning I said something like.. well heck.. this is a piece of cake!... then I got lambasted with the side-effects.. bigtimerealbad! -- I do so love my Copaxone now.. lumps, bumps, swelling, sting and all that good stuff that goes with it... definitely a piece of cake compare to the Avonex.. Though a good friend has a sister who never ever ever had any of the side-effects from Avonex.. Oh honey, I think that you will find, the longer you deal with the MonSter, the rougher fall & winter will be.. need to lay in lots of Vitamin D for the winter months.. I spent the largest part of this past winter away from the group.. I wasn't fit company for man nor beast.. As people have been saying, the studies on our lack of Vitamin D seems to have a whole lot to do with Multiple Surprises.. and because a lot of us aren't in sunny Florida (Ahem.. Akiba).. we don't get the sunshine to absorb the Big "D"... and on top of that.. our movement is even more limited because of the weather.. We aren't about to go out in all that snow tooling around in our chairs or risk falling while wading through snow (even if the landing might be smoother than in the summer).. AND it does look quite dismal when you're first diagnosed too... I don't think it will be really all that long before you too start to develop our very strange sense of humor.. Having MS is a whole lot like being in a perpetual grieving situation.. Every little bit we experience or lose, starts the grieving process all over again.. all five stages of it.. I would almost swear though, that it will get better for you as time goes on.. and you will eventually learn to compensate for the things you find it difficult to get around right this minute.. except I still haven't learned to compensate for pulling a trash bag out of the trash can.. still have to turn it upside down into a new bag if the trash needs emptied.. Oh.. and I still can't get passed taking a hot bath.. I know I'm going to turn to rubber, but I just can't stick my bare buns in lukewarm water.. just ain't a gonna happen.. so if I have to get dressed up to go out.. I HAVE to start about 5 hours before time to leave and get my bath, so that I'll have recouped some control by the time I need to get dressed.. And it does help tremendously to have a husband or significant other.. or just somebody to hold you up and make you laugh when things get you down.. makes a habit of being a clown and it's never ever a dull moment around here... there's always something to keep me on my toes! And when I get really down.. I fire up my "attitude tunes" and listen to them.. a good one to listen to would be... well.. you might like is Baz Luhrman's Sunscreen here: This one always picks me up a bit.. then of course there are the songs like Tippin's "Kiss This".. and Underwood's "Before He Cheats".. and a few other with real "attitude".. definitely picks me up and calms me down.. but then I've always had a tremendous love of music.. HUGS |)onna Wow Donna, that is a lot of different meds~ it sounds like the keppra makes you hostile? but you're not aware? interesting. I've tried different allergy meds and many of them made me hostile and didn't do what I needed them to do so they were out. Today I was very tempted to try a valium to see if it would relax me and give me relief from these muscle spasm at my collar. with the stress of the day combined with allergy shots yesterday I am way hurting all over. Did you say you were doing cancer treatment on top of your ms? That was the one thing that clicked for me when reading that book I mentioned, The Chronic Illness Experience, and the magazine the arthritis foundation puts out...that ms is not exclusive, that we can have other issues/disorders/diseases etc. Did you always have the outlook you have? I found that this fall I couldn't even imagine living with such pain, with such limitations. I was very deep in sorrow. Some things passed, I found a counselor that is very focused, and have my husband for such a great example. I kept finding myself looking at the really old people and wondering what is it that motivates them? I was having (and probably still am) difficulty finding motivation. People say they want to be there to see their kids do this/that as they grow up and build their lives, and various other things...I just don't seem to key on that. I want to be but it's like not having an answer to a question. thanks for sharing you meds and experiences with them, I'm proud of you for being so positive and encouraging. Hope you were able to keep your food down for a longer time last night~ Dee Quote Link to comment Share on other sites More sharing options...
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