Guest guest Posted September 17, 2011 Report Share Posted September 17, 2011 Randy, i asked around in other groups and the response was varied.some started walking without their aids( wheelchairs, walkers, canes) while others didnt see any benefit at all. Same with side effects. This drug was originally used as an pesticide. Inviato da iPad Il giorno 14/set/2011, alle ore 17:38, " RandyW " ha scritto: > What's the latest opinion on this MS drug? > > I tried compounded Fampridine a few years ago (B4 Ampyra), > but it didn't seem to do much at all, + or -. > Is Ampyra helping anybody, or is it just expensive wishful thinking? > Randy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2011 Report Share Posted September 17, 2011 Hello everyone, I've been taking AMPYRA since July 14, 2010, and well i've not walked without any help from my canes, actually i'm in the chair 80% of the time and walking consist of the left leg trying to walk normal while the right leg goes off to the far right dragging,along with foot drop. Though it does make me faster, it also has a very ODD side EFFECT which is COLD CHILL'S. it happen's every time the drug is released evry hour or so, i've called Curascript several time's about this very uncomfortable side effect and they say other people have complained of this side effect!! The cole chill's are very cold until they pass but, they stay with u until the pill is out of your system, i used to take 2 pills a day but i told my neuo i didn't like taking 2 pills because of the chill's so he said just take 1 a day.The chill's never went away. If this is a pestaside then please print the link so i can print it out and show my neuro who won't beleve it either way. thank u Subject: Re: AMPYRA status? To: " mscured " <mscured > Date: Saturday, September 17, 2011, 6:01 AM  Randy, i asked around in other groups and the response was varied.some started walking without their aids( wheelchairs, walkers, canes) while others didnt see any benefit at all. Same with side effects. This drug was originally used as an pesticide. Inviato da iPad Il giorno 14/set/2011, alle ore 17:38, " RandyW " ha scritto: > What's the latest opinion on this MS drug? > > I tried compounded Fampridine a few years ago (B4 Ampyra), > but it didn't seem to do much at all, + or -. > Is Ampyra helping anybody, or is it just expensive wishful thinking? > Randy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2011 Report Share Posted September 17, 2011 My husband takes 4ap still, the compounded version of Ampyra, because he had heard that a lot of infections, UTI’s had been reported with Ampyra. In fact, he did change to Ampyra when it first came out, and 4 months later got an infection, which eventually put him in the hospital and rehab center for over a month. He went back to 4ap and has not got an infection since which has been about 9 months, and never had one for the 2 years prior he took 4ap. My husband has PPMS and can no longer walk and can only stand with assistance for less than 5 min. The 4ap does help him quite a bit, just to be able to move better and it gives him a little strength to get through the day. 4ap is really his only option and nothing else has helped him. He just continues to get worse each year. It is definitely worth a try. I know a few other pp that take it, Ampyra, and it helps. One of our friends took 4ap for quite a few years and switched to Ampyra because it was cheaper through insurance, but says it does not work as good as 4ap. Ampyra is 20mg total for the day. 4ap can be prescribed usually up to 40mg for the day. My husband is on 12.5 3 times a day. From: mscured [mailto:mscured ] On Behalf Of Jackie Herman Sent: Saturday, September 17, 2011 5:02 AM To: mscured Subject: Re: AMPYRA status? Randy, i asked around in other groups and the response was varied.some started walking without their aids( wheelchairs, walkers, canes) while others didnt see any benefit at all. Same with side effects. This drug was originally used as an pesticide. Inviato da iPad Il giorno 14/set/2011, alle ore 17:38, " RandyW " <randy.wiseman@... <mailto:randy.wiseman%40gmail.com> > ha scritto: > What's the latest opinion on this MS drug? > > I tried compounded Fampridine a few years ago (B4 Ampyra), > but it didn't seem to do much at all, + or -. > Is Ampyra helping anybody, or is it just expensive wishful thinking? > Randy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2011 Report Share Posted September 17, 2011 Hi Randy, I think Jackie is right on, it is mixed, not a one size fits all. Hubby takes it sometimes it seems to make a difference, then not, then even maybe too much stimulation, another odd one. He never had bad side effects though. Blessings, Bianca Connected by DROID on Verizon Wireless Re: AMPYRA status? Randy, i asked around in other groups and the response was varied.some started walking without their aids( wheelchairs, walkers, canes) while others didnt see any benefit at all. Same with side effects. This drug was originally used as an pesticide. Inviato da iPad Il giorno 14/set/2011, alle ore 17:38, " RandyW " ha scritto: > What's the latest opinion on this MS drug? > > I tried compounded Fampridine a few years ago (B4 Ampyra), > but it didn't seem to do much at all, + or -. > Is Ampyra helping anybody, or is it just expensive wishful thinking? > Randy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2011 Report Share Posted September 17, 2011 Thanks for the replies. I'm getting from your experiences that not much has changed since I was taking compounded 4-AP, eventually branded as Fampridine (I read that this drug was originally dev'd to kill birds). But now a drug company has realized they can cash-in by marketing and selling it, cloaked in a new, flashy name. Maybe this should be a thread of its own, but I'm wondering: How common is it that many of the MS labels docs are quick to assign are fundamentally attributable to Lyme Disease, probably undiagnosed and then eventually turning chronic? I'm not sure where this leads us, maybe to focus more attention on how to overcome LD? Randy > > Hi Randy, I think Jackie is right on, it is mixed, not a one size fits > all. > Hubby takes it sometimes it seems to make a difference, then not, then > even > maybe too much stimulation, another odd one. He never had bad side > effects > though. > > Blessings, Bianca > > Re: AMPYRA status? > > Randy, i asked around in other groups and the response was varied.some > started walking without their aids( wheelchairs, walkers, canes) while > others didnt see any benefit at all. Same with side effects. This drug > was > originally used as a pesticide. > > Il giorno 14/set/2011, alle ore 17:38, " RandyW " > <randy.wiseman@... <mailto:randy.wiseman%40gmail.com>> ha > scritto: > > > What's the latest opinion on this MS drug? > > > > I tried compounded Fampridine a few years ago (B4 Ampyra), > > but it didn't seem to do much at all, + or -. > > Is Ampyra helping anybody, or is it just expensive wishful thinking? > > Randy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2011 Report Share Posted September 17, 2011 My husband was given Ampyra and while it made him feel better to begin with..... He had cold chills especially in the feet. He also had a relapse in his spine (which according to the litterature that came with the meds relapses are possible). Now the neuro wants to move him from Copaxone to Tasibra (sorry if it's spelled wrong). I am worried about doing this as he hasn't been on Copaxone for more than 2 1/2 months. By the time we go back to him it will be 3 months which is what shared solutions told us it would take to become effective. So my advice is that if you feel like the medication has an intollerable side effect stop taking it. Make sure you talk to your neuro about it. If they are resistant then get a second opinion. Our Neuro understands that this is something we have to deal with not him so he follows our lead. Take care Donna in VA >To: mscured >Sent: Saturday, September 17, 2011 9:41 AM >Subject: Re: AMPYRA status? > > > >Hello everyone, I've been taking AMPYRA since July 14, 2010, and well i've not walked without any help from my canes, actually i'm in the chair 80% of the time and walking consist of the left leg trying to walk normal while the right leg goes off to the far right dragging,along with foot drop. Though it does make me faster, it also has a very ODD side EFFECT which is COLD CHILL'S. it happen's every time the drug is released evry hour or so, i've called Curascript several time's about this very uncomfortable side effect and they say other people have complained of this side effect!! The cole chill's are very cold until they pass but, they stay with u until the pill is out of your system, i used to take 2 pills a day but i told my neuo i didn't like taking 2 pills because of the chill's so he said just take 1 a day.The chill's never went away. If this is a pestaside then please print the link so i can print it out and show my neuro who won't beleve it >either way. thank u > > > > >Subject: Re: AMPYRA status? >To: " mscured " <mscured > >Date: Saturday, September 17, 2011, 6:01 AM > > > >Randy, i asked around in other groups and the response was varied.some started walking without their aids( wheelchairs, walkers, canes) while others didnt see any benefit at all. Same with side effects. This drug was originally used as an pesticide. > >Inviato da iPad > >Il giorno 14/set/2011, alle ore 17:38, " RandyW " ha scritto: > >> What's the latest opinion on this MS drug? >> >> I tried compounded Fampridine a few years ago (B4 Ampyra), >> but it didn't seem to do much at all, + or -. >> Is Ampyra helping anybody, or is it just expensive wishful thinking? >> Randy >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2011 Report Share Posted September 17, 2011 I googled Ampyra just in case it was something that might help me walk again. Looking at the side effects on the Ampyra site I know it isn't for me. It sounds as if it just makes MS worse! " AMPYRA can cause seizures. Your chance of having a seizure is higher if you take too much AMPYRA or if you have kidney problems. Before taking AMPYRA tell your doctor if you have kidney problems. Stop taking AMPYRA and call your doctor right away if you have a seizure while taking AMPYRA.AMPYRA may cause serious side effects, including kidney or bladder infections.The most common side effects of AMPYRA include: urinary tract infection; trouble sleeping (insomnia); dizziness; headache; nausea; weakness; back pain; problems with balance; multiple sclerosis relapse; burning, tingling or itching of your skin; irritation in your nose and throat; constipation; indigestion; pain in your throat. " And yes, it is a pesticide as mentioned in the Wikipedia article: http://en.wikipedia.org/wiki/AmpyraJanet To: mscured From: ellenp1958@... Date: Sat, 17 Sep 2011 06:41:02 -0700 Subject: Re: AMPYRA status? Hello everyone, I've been taking AMPYRA since July 14, 2010, and well i've not walked without any help from my canes, actually i'm in the chair 80% of the time and walking consist of the left leg trying to walk normal while the right leg goes off to the far right dragging,along with foot drop. Though it does make me faster, it also has a very ODD side EFFECT which is COLD CHILL'S. it happen's every time the drug is released evry hour or so, i've called Curascript several time's about this very uncomfortable side effect and they say other people have complained of this side effect!! The cole chill's are very cold until they pass but, they stay with u until the pill is out of your system, i used to take 2 pills a day but i told my neuo i didn't like taking 2 pills because of the chill's so he said just take 1 a day.The chill's never went away. If this is a pestaside then please print the link so i can print it out and show my neuro who won't beleve it either way. thank u .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2011 Report Share Posted September 17, 2011 All, my hubby as said prior, has been on Ampyra for a while now and it's been a so so situation. After reading all the one on one experiences he feels like to just get off it slowly. Tysabri, boy, my sweet love went through paralysis, 10 days of hospital almost going into respiratory and cardiac arrests when I had to call 911 and once more in the hospital. His white blood cells were skyrocketing high. All docs at hospital actually agreed he is NOT a text book MSer, really, who IS? Now we are back at Lyme and other infections.... so yep, again, all disease has a cause, different for ones maybe but you don't just have MS due to NOtHING! As for us screw all pharm drugs, they make money, we loose our abilities. Hubby was able to walk some and function alright before Tysabri, now he is good lying down but as soon as he tries activity, standing up, transferring, he is too weak and quality of life for right now is lowered to being in the home all the the time. I try to get him out, lifting and holding him up and all, sadly there is only so much we/I can do.... Just saying, just venting, many blessings Bianca Connected by DROID on Verizon Wireless Re: AMPYRA status? > > >Â >Hello everyone, I've been taking AMPYRA since July 14, 2010, and well i've not walked without any help from my canes, actually i'm in the chair 80% of the time and walking consist of the left leg trying to walk normal while the right leg goes off to the far right dragging,along with foot drop. Though it does make me faster, it also has a very ODD side EFFECT which is COLD CHILL'S. it happen's every time the drug is released evry hour or so, i've c Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2011 Report Share Posted September 17, 2011 HI JANET I JUST WENT TO WIKIPEDIA AND TYPED IN AMPYRA WHAT AN EYE OPENER!!!!!!!!!!! NO WONDER I HAVE COLD CHILL'S ON 95 DEGREE DAY'S... I'M TAKING BIRD CONTROL POSION!!!!!!!!!!!@#$#@!%^ & & *$#@@! Subject: RE: AMPYRA status? To: " mscured " <mscured > Date: Saturday, September 17, 2011, 12:33 PM Â I googled Ampyra just in case it was something that might help me walk again. Looking at the side effects on the Ampyra site I know it isn't for me. It sounds as if it just makes MS worse! " AMPYRA can cause seizures. Your chance of having a seizure is higher if you take too much AMPYRA or if you have kidney problems. Before taking AMPYRA tell your doctor if you have kidney problems. Stop taking AMPYRA and call your doctor right away if you have a seizure while taking AMPYRA.AMPYRA may cause serious side effects, including kidney or bladder infections.The most common side effects of AMPYRA include: urinary tract infection; trouble sleeping (insomnia); dizziness; headache; nausea; weakness; back pain; problems with balance; multiple sclerosis relapse; burning, tingling or itching of your skin; irritation in your nose and throat; constipation; indigestion; pain in your throat. " And yes, it is a pesticide as mentioned in the Wikipedia article: http://en.wikipedia.org/wiki/AmpyraJanet To: mscured From: ellenp1958@... Date: Sat, 17 Sep 2011 06:41:02 -0700 Subject: Re: AMPYRA status? Hello everyone, I've been taking AMPYRA since July 14, 2010, and well i've not walked without any help from my canes, actually i'm in the chair 80% of the time and walking consist of the left leg trying to walk normal while the right leg goes off to the far right dragging,along with foot drop. Though it does make me faster, it also has a very ODD side EFFECT which is COLD CHILL'S. it happen's every time the drug is released evry hour or so, i've called Curascript several time's about this very uncomfortable side effect and they say other people have complained of this side effect!! The cole chill's are very cold until they pass but, they stay with u until the pill is out of your system, i used to take 2 pills a day but i told my neuo i didn't like taking 2 pills because of the chill's so he said just take 1 a day.The chill's never went away. If this is a pestaside then please print the link so i can print it out and show my neuro who won't beleve it either way. thank u .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2011 Report Share Posted September 18, 2011 I am part of a fundraising group that is very familiar with the neuro who developed this drug. He worked on it for 15+ years to help his patients. Now, once a pharmaceutical company purchased it, I am not sure how they put it together. That said, I have been on it for about 2 1/2 years. At first I considered it a miracle drug, and was very excited. I think I am experiencing the side effect of poor balance. But who knows, it could be my MS getting worse. I plan on testing to see if I go off it, will I notice a difference. T Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2011 Report Share Posted September 18, 2011 I think our approach will be to stay with the Copaxone for a little longer at least. It's suppose to help to prevent relapses. We are not sure still as to the type of MS he has. All we know is he has had 2 document Relapses and the dr's are now comfortable with calling it MS. I don't understand that but okay. We went through so much heartache when all this started. We started out being told he had a stroke/or a series of mini strokes. Once we got our head wrapped around that.... MS was the diagnosis. Then to confirm it they did a spinal tap and it changed once again. Lymphoma! I had a neuro look me in the face and tell me my dh had 2 days to 3 weeks to live. They actually sent him to another hospital to die. The oncologist started him on steriods and we did all the DNR and such. I don't think I have cried harder than when I had to deal with that. But then they looked at the test results and put the breaks on and said maybe not lymphoma maybe MS. So back to the drawing board. They had a bone marrow test done. They had more MRI's than they could use (they were doing one every day) They had the spinal tap. What was next? A biopsy. That would give us a difiniative answer. So we were ready to do this. And then another brick wall! The results were tainted because of the steriods the oncologist gave him. So then was it a treated lymphoma or was it MS. We didn't know but DH was getting worse. So we took a leap of faith so to speak and said start treating for Lymphoma. Well they oncologist said she wanted to send him to Hopkins so I took a leave of absense (we live in SC but work in VA so neither are close to that hospital). Well then insurance got involved and said nope. Can't move him. He was in a level one hospital and since Hopkins was a level one there was no need to move him. Oh one little thing I forgot to mention was when he was first transfered they had PT coming in and they dropped him breaking 2 of his ribs in 3 places and proceded to tell us that he was only bruised! But anyway back to the story.... The oncologist got in touch with a pathologist and asked them to help even though dh was not there. They did and the path said that he would have never clasiffied this as MS. Also he said that the slides he was sent weren't properly done (good thing the neurosurgeon took lots of samples and they were frozen). So 2 months later he started on steriods. Oh and we found out about the ribs being broken when he had a kidney stone! So we spent time in PT where they didn't do much to help him. They knew that he was paralyzed on the left side (and somewhat on the right due to lack of use) and said he didn't need a power chair. That since I was here I could push him in a standard wheel chair. We live in an apt (that at the time he was in the hospital was not wheelchair accessable) that I had move out of and into an apt that was wheelchair accessable. DH could walk short distances. We returned to work and things were going good and then it all started again. The foot drop, the lack of coordination, lack of muscle control ect. He gets emotional and that makes me emotional. I just want to take all the pain away for him. See DH had played soccer most of his life (as a hobby). He is a structural engineer and is use to going to job sites and getting where he wants to get without the help of other. Now he has to depend on me to get his food, give him shots (he's also a type 2 diabetic), fix his pill boxes, do the laundry, drive, everything. He is still working as his mind is still sharp as ever. It a different life than what we thought we would be living but that's what we have to deal with. DH and I work litterally in the same office. I do his drafting for him so we are together 24-7 and that's the way we like it. We have a very understanding boss and for the most part things are getting better. We still have bad days but it's getting better. I really just want this to settle and let us know where he will be for the rest of his life. I know MS is not like that but I can hope. Hugs Donna in VA >To: mscured >Sent: Saturday, September 17, 2011 10:50 PM >Subject: Re: AMPYRA status? > > > >All, my hubby as said prior, has been on Ampyra for a while now and it's been a so so situation. After reading all the one on one experiences he feels like to just get off it slowly. >Tysabri, boy, my sweet love went through paralysis, 10 days of hospital almost going into respiratory and cardiac arrests when I had to call 911 and once more in the hospital. His white blood cells were skyrocketing high. All docs at hospital actually agreed he is NOT a text book MSer, really, who IS? >Now we are back at Lyme and other infections.... so yep, again, all disease has a cause, different for ones maybe but you don't just have MS due to NOtHING! >As for us screw all pharm drugs, they make money, we loose our abilities. Hubby was able to walk some and function alright before Tysabri, now he is good lying down but as soon as he tries activity, standing up, transferring, he is too weak and quality of life for right now is lowered to being in the home all the the time. I try to get him out, lifting and holding him up and all, sadly there is only so much we/I can do.... > >Just saying, just venting, many blessings Bianca > >Connected by DROID on Verizon Wireless > > Re: AMPYRA status? >> >> >> >>Hello everyone, I've been taking AMPYRA since July 14, 2010, and well i've not walked without any help from my canes, actually i'm in the chair 80% of the time and walking consist of the left leg trying to walk normal while the right leg goes off to the far right dragging,along with foot drop. Though it does make me faster, it also has a very ODD side EFFECT which is COLD CHILL'S. it happen's every time the drug is released evry hour or so, i've c > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2011 Report Share Posted September 18, 2011 Donna, What a nightmare you have been living. No one should suffer with such uncertainty. May I suggest looking outside " the system " to find answers? Even with all of their education, in my experience many MD's do not have sufficient curiosity to compel them to root out the true cause of symptoms. MD's whose charges are covered by typical health insurance may not have the inquisitiveness or the impetus needed to discover the true cause of symptoms. Alternative health care professionals may be able to help, if you are willing to think " outside the box " . Since receiving a diagnosis of Multiple Sclerosis in 2004 (by a competent neurologist and having had it confirmed by the head of the MS Clinic at a major university hospital here in California), I have come to the conclusion that " MS " is a convenient label for MD's to slap on a list of symptoms which are commonly associated with one another. In my understanding, " Multiple Sclerosis " is simply a descriptive diagnosis. It describes a condition - literally many lesions. The name itself (MS) does not even hint at a possible underlying cause of the collection of symptoms. The cause could be one of several possibilities. For me, the underlying causative agent turned out to be the Lyme bacteria – I have what my Lyme-literate doctor calls " Lyme-induced MS " . I do not remember ever having been bitten by a tick. My Lyme-literate MD speculates that I was bitten as a child and that the infection lay dormant in my body for some 35 to 40 years. Under extreme emotional stress, my immune system became depleted, thus allowing the Lyme infection to resurface and overwhelm my body which in turn created a laundry list of symptoms subsequently labeled " MS " . The MD's with whom I consulted (prior to the discovery of the Lyme bacteria in my blood) were comfortable calling my condition MS and prescribing pharmaceuticals in hopes of slowing its inevitable progression. It took me many years and several doctors, MD's and alternative doctors, until I literally stumbled into the office of a doctor who practices nutritional medicine. One glance at my medical history and he suspected Lyme as the infectious agent causing my symptoms. A positive blood test result from IgeneX confirmed his suspicion. At this point I am treating the Lyme infection and dealing the best I can with the neurological symptoms that fall under the broad descriptive title of MS. Blessings to you on your search. KC > > I think our approach will be to stay with the Copaxone for a little longer at least. It's suppose to help to prevent relapses. We are not sure still as to the type of MS he has. All we know is he has had 2 document Relapses and the dr's are now comfortable with calling it MS. I don't understand that but okay. We went through so much heartache when all this started. We started out being told he had a stroke/or a series of mini strokes. Once we got our head wrapped around that.... MS was the diagnosis. Then to confirm it they did a spinal tap and it changed once again. Lymphoma! I had a neuro look me in the face and tell me my dh had 2 days to 3 weeks to live. They actually sent him to another hospital to die. The oncologist started him on steriods and we did all the DNR and such. I don't think I have cried harder than when I had to deal with that. But then they looked at the test results and put the breaks on and said maybe not lymphoma maybe MS. So back > to the drawing board. They had a bone marrow test done. They had more MRI's than they could use (they were doing one every day) They had the spinal tap. What was next? A biopsy. That would give us a difiniative answer. So we were ready to do this. And then another brick wall! The results were tainted because of the steriods the oncologist gave him. So then was it a treated lymphoma or was it MS. We didn't know but DH was getting worse. So we took a leap of faith so to speak and said start treating for Lymphoma. Well they oncologist said she wanted to send him to Hopkins so I took a leave of absense (we live in SC but work in VA so neither are close to that hospital). Well then insurance got involved and said nope. Can't move him. He was in a level one hospital and since Hopkins was a level one there was no need to move him. > Oh one little thing I forgot to mention was when he was first transfered they had PT coming in and they dropped him breaking 2 of his ribs in 3 places and proceded to tell us that he was only bruised! > But anyway back to the story.... The oncologist got in touch with a pathologist and asked them to help even though dh was not there. They did and the path said that he would have never clasiffied this as MS. Also he said that the slides he was sent weren't properly done (good thing the neurosurgeon took lots of samples and they were frozen). So 2 months later he started on steriods. Oh and we found out about the ribs being broken when he had a kidney stone! > So we spent time in PT where they didn't do much to help him. They knew that he was paralyzed on the left side (and somewhat on the right due to lack of use) and said he didn't need a power chair. That since I was here I could push him in a standard wheel chair. We live in an apt (that at the time he was in the hospital was not wheelchair accessable) that I had move out of and into an apt that was wheelchair accessable. DH could walk short distances. We returned to work and things were going good and then it all started again. The foot drop, the lack of coordination, lack of muscle control ect. He gets emotional and that makes me emotional. I just want to take all the pain away for him. See DH had played soccer most of his life (as a hobby). He is a structural engineer and is use to going to job sites and getting where he wants to get without the help of other. Now he has to depend on me to get his food, give him shots (he's also a type 2 diabetic), fix > his pill boxes, do the laundry, drive, everything. He is still working as his mind is still sharp as ever. It a different life than what we thought we would be living but that's what we have to deal with. DH and I work litterally in the same office. I do his drafting for him so we are together 24-7 and that's the way we like it. We have a very understanding boss and for the most part things are getting better. We still have bad days but it's getting better. I really just want this to settle and let us know where he will be for the rest of his life. I know MS is not like that but I can hope. > Hugs > Donna in VA > > > >To: mscured > >Sent: Saturday, September 17, 2011 10:50 PM > >Subject: Re: AMPYRA status? > > > > > > > >All, my hubby as said prior, has been on Ampyra for a while now and it's been a so so situation. After reading all the one on one experiences he feels like to just get off it slowly. > >Tysabri, boy, my sweet love went through paralysis, 10 days of hospital almost going into respiratory and cardiac arrests when I had to call 911 and once more in the hospital. His white blood cells were skyrocketing high. All docs at hospital actually agreed he is NOT a text book MSer, really, who IS? > >Now we are back at Lyme and other infections.... so yep, again, all disease has a cause, different for ones maybe but you don't just have MS due to NOtHING! > >As for us screw all pharm drugs, they make money, we loose our abilities. Hubby was able to walk some and function alright before Tysabri, now he is good lying down but as soon as he tries activity, standing up, transferring, he is too weak and quality of life for right now is lowered to being in the home all the the time. I try to get him out, lifting and holding him up and all, sadly there is only so much we/I can do.... > > > >Just saying, just venting, many blessings Bianca > > > >Connected by DROID on Verizon Wireless > > > > Re: AMPYRA status? > > > >My husband was given Ampyra and while it made him feel better to begin with..... He had cold chills especially in the feet. He also had a relapse in his spine (which according to the litterature that came with the meds relapses are possible). Now the neuro wants to move him from Copaxone to Tasibra (sorry if it's spelled wrong). I am worried about doing this as he hasn't been on Copaxone for more than 2 1/2 months. By the time we go back to him it will be 3 months which is what shared solutions told us it would take to become effective. > >So my advice is that if you feel like the medication has an intollerable side effect stop taking it. Make sure you talk to your neuro about it. If they are resistant then get a second opinion. Our Neuro understands that this is something we have to deal with not him so he follows our lead. > >Take care > >Donna in VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2011 Report Share Posted September 19, 2011 KC, my thoughts exactly! Donna, I am so very sorry you and your husband have been put through such a load of BS. I, myself, am just starting to pursue some more info on if I have Lyme or not. It ticks (lol, no pun intended!) me off how little the Drs know about MS, and then try to blow pretty smoke up your *you know what* and tell you what you need to do with this 'thing' they've got not one clue about! Definitely found out I need to be my own MD - just go to them for some suggestions. :-) God luck Donna, I hope you find the answer. > > Donna, > > What a nightmare you have been living. No one should suffer with such uncertainty. > > May I suggest looking outside " the system " to find answers? Even with all of their education, in my experience many MD's do not have sufficient curiosity to compel them to root out the true cause of symptoms. MD's whose charges are covered by typical health insurance may not have the inquisitiveness or the impetus needed to discover the true cause of symptoms. Alternative health care professionals may be able to help, if you are willing to think " outside the box " . > > Since receiving a diagnosis of Multiple Sclerosis in 2004 (by a competent neurologist and having had it confirmed by the head of the MS Clinic at a major university hospital here in California), I have come to the conclusion that " MS " is a convenient label for MD's to slap on a list of symptoms which are commonly associated with one another. In my understanding, " Multiple Sclerosis " is simply a descriptive diagnosis. It describes a condition - literally many lesions. The name itself (MS) does not even hint at a possible underlying cause of the collection of symptoms. The cause could be one of several possibilities. For me, the underlying causative agent turned out to be the Lyme bacteria – I have what my Lyme-literate doctor calls " Lyme-induced MS " . > > I do not remember ever having been bitten by a tick. My Lyme-literate MD speculates that I was bitten as a child and that the infection lay dormant in my body for some 35 to 40 years. Under extreme emotional stress, my immune system became depleted, thus allowing the Lyme infection to resurface and overwhelm my body which in turn created a laundry list of symptoms subsequently labeled " MS " . > > The MD's with whom I consulted (prior to the discovery of the Lyme bacteria in my blood) were comfortable calling my condition MS and prescribing pharmaceuticals in hopes of slowing its inevitable progression. It took me many years and several doctors, MD's and alternative doctors, until I literally stumbled into the office of a doctor who practices nutritional medicine. One glance at my medical history and he suspected Lyme as the infectious agent causing my symptoms. A positive blood test result from IgeneX confirmed his suspicion. > > At this point I am treating the Lyme infection and dealing the best I can with the neurological symptoms that fall under the broad descriptive title of MS. > > Blessings to you on your search. > > KC > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2011 Report Share Posted September 19, 2011 Also, don't know how effective it is, but there is a new Lyme culture test available from a lab... read an article about it. I don't know if it is as accurate as Igenex. Article today about new strain of Lyme infection that has been found in Russia as well as US. The article in Emerging Diseases states that 35,000 new cases of Lyme infection are found every year... I figure that number is low since its not accounting for all the incorrect MS diagnoses and Chronic Fatigue, etc... Best, Quote Link to comment Share on other sites More sharing options...
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