Re: injections for MS

[Guest guest]

My Heart goes out to you both. And I thought *I* had problems. May I do a few rounds of Healing Prayers for you both?You must be one extraordinary woman to take all this on...can you tell me more about 's syndrome? I confess total ignorance. I am 50, just diagnosed MS on April Fool's day this year, I take Rebif shots, 3x weekly, they do hurt somewhat but they are changing the formula to be less painful (has to do with the PH) and the needle to also be less painful. I think 3x weekly might be easier on both of you? Anyway, I will light a candle for you both.

Peace & Blessings~*~Akiba ~*~Pragmatic VisionaryAIM ~ AkybaICQ 59094928MSN ~ akyba@...Yahoo~ AkybaI love painting my toenails...means I can still reach 'em!

injections for MS

My daughter, who already has Rett syndrome, now has MS. I begged off giving her shots for right now and we are trying naltrexone, which is something many of the Rett syndrome population has been on and/or is on now. Since cannot speak and cannot point to where things hurt (she has no hand use due to the Rett syndrome) she cannot tell me where she hurts. She cries a lot and is on Tylenol #4 and Neurontin for pain, but since she just began on naltrexone, I don't know if the Tylenol #4 is working. She keeps crying and crying.The questions I have are these:if the naltrexone doesn't help her by December, which is her next MRI, I have been told I will have to give her the injections that start with the letter C. Can someone receiving these injections let me know if the needle is really big or is it small like the diabetic type needles are, and do the injections hurt after they are given?If anyone is taking naltrexone, what sort of pain medications are you taking that are not cancelled out by the naltrexone? I have joined a naltrexone list, also and will be asking this question on that list, too.The only reason we even found out that has MS is that last August he had what appeared to be a stroke on her right side. The MRI showed lesions. had been crying for a year prior to this but we found out she had a huge gallstone, which is something the Rett syndrome population seems to get more often than other types of syndrome-y things. I kept saying to everyone that I know something else is wrong since has not stopped crying after her gallbladder was removed. I now suspect she has had MS for many year and I am glad we now know.I thank you all for answers you can give since all I can do is read the literature and wonder if is having the symptoms of specific pain areas, etc.Edna and (just had her 24th birthday)in WA state

[Guest guest]

You can read about Rett syndrome at

http://www.rettsyndrome.org/.

I get very tired doing long explanations on it. I got when

she was four years old and I adopted her. I knew she had Rett

syndrome but it didn't matter because I love her so much. I also

have another girl I adopted who is very, very disabled. I think I

am the most blessed person on the earth to have been the one allowed to

have these girls. It is the " normal " ones I don't do so

well with (!). Sometimes when my little niece and nephew come over

we are glad when they go home. They are very well behaved but they

are very active.

The neurologist thinks the shots that start with the letter C would

be the best since there wouldn't be flu-like symptoms that would mask

pain or that I wouldn't have to try to figure out if is having

pain or if it just a side effect of the shots, etc.

At 02:53 PM 8/15/2004 -0400, you wrote:

My Heart goes out to you both. And I thought *I* had problems.

[Guest guest]

Hello Edna,

You are so right there is a lot of information on line about rettsyndrome Yes you were lucky to be able to adopte even one special needs child let alone two. And you must have a very full heart and a lot of patience and a strong mind and body. My daughter worked with the "handicapped" students when she was in high school and she brought some of them home for visits or overnight stays.

I felt then that she would be working with the special children or give birth to at least one or two. I have no grandchildren with much wrong with them except some with the smart mouth. My daughter is an LPN and works in a nursing home now. And she is still in touch with some of the special kids from school and they still come over to her house to visit or for one of her fab parties.

I have not taken the injections you were speaking of, however I did take one of the others for a while and had to quit because I was allergic. The injections were not hard to give and once the first week was over they were no bother other than remembering to take them. I continued on them because I thought it was just side effects but come to find out my body did not like that medicine. lol.

If I were you I would try the one the dr recommends for a month or so at least; but then I am not you and you know more about your family than I do.

is lucky to have a loving mother.

Welcome again and I hope you find what you need here with this fine group of friends.

Lynn (Moderator/Helper)

wishing you and yours

Love and Happiness;

Flowers and Butterflies

Re: injections for MS

You can read about Rett syndrome at http://www.rettsyndrome.org/. I get very tired doing long explanations on it. I got when she was four years old and I adopted her. I knew she had Rett syndrome but it didn't matter because I love her so much. I also have another girl I adopted who is very, very disabled. I think I am the most blessed person on the earth to have been the one allowed to have these girls. It is the "normal" ones I don't do so well with (!). Sometimes when my little niece and nephew come over we are glad when they go home. They are very well behaved but they are very active.The neurologist thinks the shots that start with the letter C would be the best since there wouldn't be flu-like symptoms that would mask pain or that I wouldn't have to try to figure out if is having pain or if it just a side effect of the shots, etc. At 02:53 PM 8/15/2004 -0400, you wrote:

My Heart goes out to you both. And I thought *I* had problems.

[Guest guest]

We have a family in our church that are always taking on special needs kids and they get a lot out of there care for the kids.

The medicine is called Copaxone.

Bill

Re: injections for MS

You can read about Rett syndrome at http://www.rettsyndrome.org/. I get very tired doing long explanations on it. I got when she was four years old and I adopted her. I knew she had Rett syndrome but it didn't matter because I love her so much. I also have another girl I adopted who is very, very disabled. I think I am the most blessed person on the earth to have been the one allowed to have these girls. It is the "normal" ones I don't do so well with (!). Sometimes when my little niece and nephew come over we are glad when they go home. They are very well behaved but they are very active.The neurologist thinks the shots that start with the letter C would be the best since there wouldn't be flu-like symptoms that would mask pain or that I wouldn't have to try to figure out if is having pain or if it just a side effect of the shots, etc. At 02:53 PM 8/15/2004 -0400, you wrote:

My Heart goes out to you both. And I thought *I* had problems.