Guest guest Posted March 14, 2002 Report Share Posted March 14, 2002 Adrienne, It sounds like you had a lot of the same symptoms as myself....I have CFS/MCS and I've had one B-12 shot about 10 days ago.......didn't seem like it helped me except I felt a lot worse for quite a few days....I could have been detoxing further and didn't know for sure.... But, I was wondering how were you able to get the B-12 to be able to inject it daily? Also, have you heard if it is safe to do it daily? Thanks for the really interesting information, Luann > , > I must have been reading incorrectly; I kept wondering how Steve Bullock > was > injecting so much liquid into his body twice/da. See; I read five cc's not > POINT five cc's. (YAY brain fog!) > Anyhow I figured I couldn't do that, and didn't want to do 2 shots/da., so > when I started on b12, I decided I would do 1.5 cc's/day. That was a little > > strong at first, so I went down. I wound up at 1.25./da. Now, after 10 mos, > I > must be making up the defecit, because I can skip a day a couple of times a > > week and not notice a change. Till recently, if I allowed reluctance to > inject stop me, I was sorry by the afternoon. > I am getting truly miraculous benefits from these injections, and only wish > I > had managed to get them sooner. > My brain was seriously malfunctioning; way more than fog and I was afraid I > > was heading toward Alzheimers. Nothing like that anymore, tho still fuzzy > around the edges. > As well, way more energy,less depression, more feeling, and way less pain > in > my feet, which I now realize came from neuropathy, and less pain in other > joints as well. > I haven't had this much benefit from anything in years! > Nuff said! > Adrienne > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2002 Report Share Posted September 4, 2002 Thanks Margaret. I am just trying to cope and get some evals done for and then get him into the best place school-wise. I don't know if his school is the best place for him, as I always felt. NOW I know why. I am dealing but have been sad since last Friday. Thanks for the support. A. > <<I always poo-poo'd the idea that children w/DS could ALSO be autistic. I > always thought it was JUST the DS... or for , the DS AND the > lack of vision. A>> > > Hi, Everyone....Andrienne...welcome to the group. I poo-poo'd the idea of a > dual dx. for almost 6 yrs. I couldn't handle it emotionally myself. DON'T > do that!!! is young and with early intervention for the autism, he > may surprise you. The autism will become 's primary dx....forget the > DS...and intervention will help. The best part is knowing that you are not > alone....there are lots of other 's' out there with DS AND autism. > Take care, Everyone. > Margaret Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2002 Report Share Posted September 5, 2002 Kathy, I was born and raised in Long Beach. After I married I lived in Cypress. Adrienne > Where in Calif did you live?? > Kathy > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2002 Report Share Posted September 5, 2002 I live in Folsom (outside Sacto) and lives in Oroville!! Re: Adrienne Kathy, I was born and raised in Long Beach. After I married I lived in Cypress. Adrienne > Where in Calif did you live?? > Kathy > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2002 Report Share Posted September 5, 2002 In a message dated 9/5/02 8:08:33 PM US Eastern Standard Time, mfroof@... writes: << <still don't really speak... IS there hope? Do some children never talk or do they talk but not audibly? I would give anything for to say something.... I am having to accept that it may not happen for a LONG TIME...A>> >> HI..Just want to say that Gene is slowly speaking more each year. He is 14 and we did see some increased speech last year when he started on Zoloft ....now on Luvox. He can get his point across too...mainly 2 or 3 word sentences like ... " stop it " or " Drew " (for " Where is Drew?) " or one of my favorites... " fantastic! " or " yes, mom " . He can say many words for all his favorite foods and the things he wants. What I hope to see some day is that I can have a conversation with him. I would love to able to say, " who did you sit with on the bus? " or " what hurts? " or " what do you want to do today? " and have him actually answer back. That would be cause for a great celebration and I am pretty confident that that is yet to come. Lauri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2002 Report Share Posted September 7, 2002 Hello, Lauri! Just want to say in Gene's own words, how " fantastic " that he is starting to speak, gives us all a lot of hope! My regressed also after autism but some words have come back, he will say a word clearly sometimes when seeing a photo of it (real photo) of foods,of course, pizza especially, and familiar people, but only certain times, some days no words. When the words apear, they can be very clear sometimes and this is amazing to us. Because he is pretty low functioning. Sometimes he says ma maaa, hope he is meaning me, I take it as this and love it!!! Arent all our kids so similar yet different? so happy for Gene! Dawn, s 5yrs. > In a message dated 9/5/02 8:08:33 PM US Eastern Standard Time, mfroof@A... > writes: > > << <still don't really speak... IS there hope? Do some children never talk or > do they talk but not audibly? I would give anything for to say > something.... I am having to accept that it may not happen for a LONG > TIME...A>> >> > > HI..Just want to say that Gene is slowly speaking more each year. He is 14 > and we did see some increased speech last year when he started on Zoloft > ...now on Luvox. He can get his point across too...mainly 2 or 3 word > sentences like ... " stop it " or " Drew " (for " Where is Drew?) " or one of my > favorites... " fantastic! " or " yes, mom " . He can say many words for all his > favorite foods and the things he wants. What I hope to see some day is that > I can have a conversation with him. I would love to able to say, " who did > you sit with on the bus? " or " what hurts? " or " what do you want to do today? " > and have him actually answer back. That would be cause for a great > celebration and I am pretty confident that that is yet to come. > > Lauri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2002 Report Share Posted September 9, 2002 Margaret, you said the Autism will be the primary dx....forget the DS.... Is this because the Autism is more problematic...or what....Montyman's primary 'written' dx is DS....I havent been able to get him double dx'ed...but know he is Autistic, he has 12 out of 14 characteristics.... I have always been alone in this. I dont even know where the Autistic kids are up here.....I went to some meetings across the lake and gleaned info a few years ago,...not sure if I had pushed the dx where it would have gotten me anyway....by the time I figured this all out he was 9 or 10. At 20, I'm wondering if there is anything alse I can do for my son....just thought it was interesting what you said to Adrienne, and I do agree! I started a 'let's play to grow' group when my son was very young, I remember saying " well, here come the DS kids....and then there is Montyman! " ......by the time he was 6 he had nothing in common with the group...so we phased out. Pretty much been that way with everything. He is in a good placement in school this year, tho, and he loves it. I dont know where we are going to go from here. He will finish school next year. Maybe you parents of the 20's and up can give me some advise on that one. As far as pushing for a double dx now, I dont know to what end. Any thoughts? Donna Montyman's Mom...who does NOT want me on the computer right now! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2002 Report Share Posted September 9, 2002 oh, and Welcome, Adrienne! LOL....I am new here too! You will be blessed. Donna, Montyman's Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2002 Report Share Posted September 9, 2002 At 07:23 PM 9/9/2002 EDT, you wrote: >Margaret, you said the Autism will be the primary dx....forget the DS.... > Is this because the Autism is more problematic...or >what....Montyman's primary 'written' dx is DS....I havent been able to get >him double dx'ed...but know he is Autistic, he has 12 out of 14 >characteristics.... We use autism as the primary dx because it's the autism that gets in the way of him being a " typical kid with DS. " Joan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2003 Report Share Posted November 1, 2003 Adrienne and all, One thing that I've found helps me is to drink Warm water with my food. Cold liquid seems like it makes everything close up more. When I drink warm water it seems like things open up a bit and it's easier to get the food down. When I say " warm " , I'm talking bath-water temperature. It's a little weird to drink warm water, but you get used to it, and if it helps, then who cares how weird it is? ;-} Good luck, jeffy -- Jeff Youngstrom - http://TomeCat.com/jeffy/ " I watch the sky instead of television. " -- Marilyn Hacker Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2004 Report Share Posted April 2, 2004 glad to hear u are making some headway in this dd ..its about time!! tealk > [Original Message] > From: Adrienne Gomez <duckblossm@...> > < > > Date: 4/2/2004 5:44:11 PM > Subject: Re: NT Factor > > Absolutely very good for me. I have been on it for a few months now. I could feel my energy change pretty quickly. I have decreased the amt. of multi-vitamin I was using in favor of Propax w. NT FActor. > NT Factor alone is only sold to practioners, but I checked w. Pro-Health, and the research they are reporting, at least one of those studies (the one on fatigue?) was actually done w. the Propax product, not the NT alone. > I can't recall clearly, (never can, dammit), but I do know I felt assured that I would be in the ballpark doseagewise if I took the Propax, and did not need to bother with getting the NT alone. > > I have to say that for some months now, everything I try seems to help, at least a little. Something good is happening for me at last, after being in a pit for many years. > Adrienne > NT Factor > > > Anybody try this? It's in the current pro-health newsletter as a > phoshpolipid. I haven't looked it up yet. One doctor was saying how > great it was and increased energy. > > > > This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. > > > > ---------------------------------------------------------------------------- -- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2011 Report Share Posted October 3, 2011 The two with whom I'm close to just an hrs trip there, they both have been fantastic with me, I explain to them from the start if they moved too fast gran wouldn't be able to stop them from falling, and the eldest now 6 years has not once caused me pain from her actions, she treats me like a queen, and our new little chap just 4 months old seems to be following in his sisters steps.. Tis so beautiful and I miss them so much between visits as traveling hurts so much I travel as little as possible but thanks to technology nowadays chatting face to face is easy no matter where you are in the world With digital cameras and video cams we are able to witness those special moments we can't attend, wish I had a digital camera when my babes were little, they are so much fun. Thanks for the well wishes and I send you warm greeting in return Cheers Adrienne > > > > > > i was meaning noone in my family understands, not those who are here. Sorry > > > > > > > > > > > > >________________________________ > > > >From: BRUCE WINGO <joanwingo2@> > > > >Spinal Stenosis Treatment > > > >Sent: Sunday, October 2, 2011 10:32 AM > > > >Subject: newly diagnosed > > > > > > > > > > > > > > > > > > > > > > > >To say that " noone here seems to understand " was an unfair thing to say. I completely understand. I feel the same way. I also have many other health problems besides spinal stenosis. The fact that my family loves me is what keeps me going. I would never purposely hurt them. However, I get so frustrated because my body will not let me do the things that I want to do with my six grandkids. When I try, I pay for it. > > > >The neurosurgeon told me to let him know when I'm ready for surgery. I'm scared to even think about back surgery. I know the day may come when I have to have it, but for now the shots and medicines are keeping me moving. > > > >I never saw my last post on this site so I'm not sure what caused that. Maybe this one will make it.            Joan > > > > > > > > > > > > > > > > > > > >> > > > >> > > > >>Thanks for writing Cathie, I am a very depressed unhappy person. I am just a REcluse anymore. I have spinal stenosis and DDD plus RA and I can't walk but a few steps without sitting are laying down. I have tried so many things pills, shots, etc with no relief. My back and my legs hurt so bad and sometimes they burn. I can't even go to the gro. store anymore. I am scheduled for surgery on the 14th, but I am so sc ared and undecided, as the neurosurgeon  ,I asked him would this surgery take away my pain, and he said he couldn't promise me anything. How scary is that.?? I feel like I am being tortured for some reason. Seems once they try to fix one thing that will call for more surgeries. I can't work anymore and that is killing me.To be truthful with you I have even thought many times of suscide, but guess I am too big a coward for that.Hope you will keep in touch, because noone here seems to understand. Have A Great Day and Feel Better. God Bless > you!! > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2011 Report Share Posted October 4, 2011 I have the same problem, sitting for more than 10 minutes causes pressure headaches tho I'm trying to get a special custom made selection of seats ie car w'chair and lounge chair which will be nice if I can get the funding approval, my girls wants me to shift closer to her, then we've got another two kids 3 and 1/2 hr away, a son an hour away in the oposit direction then two daughters in the UK. So loads of traveling to see everyone tho it hard to do I attempt to visit all of them, so the UK here we come.. I'm pleased for you your babes are close, I know one day some will return to be close by but not all and it fun to watch them live their life Cheers Adrienne > > > > > > > > > > > > > > i was meaning noone in my family understands, not those who are here. Sorry > > > > > > > > > > > > > > > > > > > > > > > > > > > > >________________________________ > > > > > > > >From: BRUCE WINGO <joanwingo2@> > > > > > > > >Spinal Stenosis Treatment > > > > > > > >Sent: Sunday, October 2, 2011 10:32 AM > > > > > > > >Subject: newly diagnosed > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >To say that " noone here seems to understand " was an unfair thing to say. I completely understand. I feel the same way. I also have many other health problems besides spinal stenosis. The fact that my family loves me is what keeps me going. I would never purposely hurt them. However, I get so frustrated because my body will not let me do the things that I want to do with my six grandkids. When I try, I pay for it. > > > > > > > >The neurosurgeon told me to let him know when I'm ready for surgery. I'm scared to even think about back surgery. I know the day may come when I have to have it, but for now the shots and medicines are keeping me moving. > > > > > > > >I never saw my last post on this site so I'm not sure what caused that. Maybe this one will make it.        Â\  Â Â Â Joan > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >> > > > > > > > >> > > > > > > > >>Thanks for writing Cathie, I am a very depressed unhappy person. I am just a REcluse anymore. I have spinal stenosis and DDD plus RA and I can't walk but a few steps without sitting are laying down. I have tried so many things pills, shots, etc with no relief. My back and my legs hurt so bad and sometimes they burn. I can't even go to the gro. store anymore. I am scheduled for surgery on the 14th, but I am so sc ared and undecided, as the neurosurgeon  ,I asked him would this surgery take away my pain, and he said he couldn't promise me anything. How scary is that.?? I feel like I am being tortured for some reason. Seems once they try to fix one thing that will call for more surgeries. I can't work anymore and that is killing me.To be truthful with you I have even thought many times of suscide, but guess I am too big a coward for that.Hope you will keep in touch, because noone here seems to understand. Have A Great Day and Feel Better. God > Bless > > > you!! > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2011 Report Share Posted October 6, 2011 My husband is diabetic and has rheumatoid arthritis. He can't do some of the things he use to do but gets around better than I do. Hope you have as good a day as possible. Joan The things we must do and the things we can no longer do, I don not like either list really... But needs must you can't let any of this stop us from doing what we want to do to preserve our sanity. Even tho some day we feel like throwing the towel, spitting the dummy, I did, just the other day, I hit my hand against the door frame and ripped my skin then dropped the contact lens container and threw the hair brush across the room in frustration at it all. Your husband not well? I am sorry if this is the case. Hope your day has a special moment you'll never forget. Adrienne > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > i was meaning noone in my family understands, not those who are here. Sorry > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >________________________________ > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >From: BRUCE WINGO <joanwingo2@> > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >Spinal Stenosis Treatment > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >Sent: Sunday, October 2, 2011 10:32 AM > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >Subject: newly diagnosed > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >ÃÆ'Æ'‚ÃÆ'‚ > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >To say that "noone here seems to understand" was an unfair thing to say. I completely understand. I feel the same way. I also have many other health problems besides spinal stenosis. The fact that my family loves me is what keeps me going. I would never purposely hurt them. However, I get so frustrated because my body will not let me do the things that I want to do with my six grandkids. When I try, I pay for it. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >The neurosurgeon told me to let him know when I'm ready for surgery. I'm scared to even think about back surgery. I know the day may come when I have to have it, but for now the shots and medicines are keeping me moving. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >I never saw my last post on this site so I'm not sure what caused that. Maybe this one will make it.ÃÆ'Æ'‚ÃÆ'‚ ÃÆ'Æ'‚ÃÆ'‚ ÃÆ'Æ'‚ÃÆ'‚ ÃÆ'Æ'‚ÃÆ'‚ ÃÆ'Æ'‚ÃÆ'‚ ÃÆ'Æ'‚ÃÆ'‚ ÃÆ'Æ'‚ÃÆ'‚ ÃÆ'Æ'‚ÃÆ'‚ ÃÆ'Æ'‚ÃÆ'‚ ÃÆ'Æ'‚ÃÆ'‚ ÃÆ'Æ'‚ÃÆ' ‚ ÃÆ'Æ'‚ÃÆ'‚ Joan > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >> > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >>ÃÆ'Æ'‚ÃÆ'‚ > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >>Thanks for writing Cathie, I am a very depressed unhappy person. I am just a REcluse anymore. I have spinal stenosis and DDD plus RA and I can't walk but a few steps without sitting are laying down. I have tried so many things pills, shots, etc with no relief. My back and my legs hurt so bad and sometimes they burn. I can't even go to the gro. store anymore. I am scheduled for surgery on the 14th, but I am so sc ared and undecided, as the neurosurgeon ÃÆ'Æ'‚ÃÆ'‚ ,I asked him would this surgery take away my pain, and he said he couldn't promise me anything. How scary is that.?? I feel like I am being tortured for some reason. Seems once they try to fix one thing that will call for more surgeries. I can't work anymore and that is killing me.To be truthful with you I have even thought many times of suscide, but guess I am too big a coward for that.Hope you will keep in touch, because noone here seems to understand. > Have A Great Day and Feel > > > Better. God > > > > > > > Bless > > > > > > > > > > > > > > > you!! > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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