Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
My daughter was dx with ms a few years ago, age 33 now. She was first concerned with side vision and blur, through some testing dx with ms.
She got into a study and has been monitored through that and took a shot regimine of the tested ms drugs. She has had a few flare ups that were not too serious but took the steriod treatment and they disappeared.
She is now through with the study, now is laid off of her job and she just says I can't do the shots, she gets welts and pain from them, is afraid of
taking the pill, heart threats scare here, and seems to think now that $ and ins. gone she can do nothing but ride along as she is. I can't help but feel she should be on some drug preventive program and would like to know
how some of you are handling your ms. She has fatigue but activities and normal life seem to be ok. Sometimes she has a little vision blur but generally can do ok, attention span she thinks she forgets and can't concentrate like she use to. Right now looks and feels ok. She was just
married and I know she is thinking of possibility of a child in the near future as well. Would love to hear a little about others and how you do.
Thanks
She got into a study and has been monitored through that and took a shot regimine of the tested ms drugs. She has had a few flare ups that were not too serious but took the steriod treatment and they disappeared.
She is now through with the study, now is laid off of her job and she just says I can't do the shots, she gets welts and pain from them, is afraid of
taking the pill, heart threats scare here, and seems to think now that $ and ins. gone she can do nothing but ride along as she is. I can't help but feel she should be on some drug preventive program and would like to know
how some of you are handling your ms. She has fatigue but activities and normal life seem to be ok. Sometimes she has a little vision blur but generally can do ok, attention span she thinks she forgets and can't concentrate like she use to. Right now looks and feels ok. She was just
married and I know she is thinking of possibility of a child in the near future as well. Would love to hear a little about others and how you do.
Thanks
"REAL" people with MS. Call the manufacturer of the drug and most of them have a program for people who can not afford their drug of choice.
Concerning the needles and bumps or welts, when I was on a shot regimine, I used iced to numb the spot before an injection. It didn't as much. After the injection, I massaged the spot to disputed the medicine.
In regard to the loss of vision, Oh my God, was this the scariest thing ever! I was put on steroids and it cleared it up. I haven't had any more problems with my sight since.
Good Luck and let us know how things are going!
Gentle hugs, Linda
Sorry to hear your daughter has MS. As far as insurance and money all most all of the drug companies have programs to help, and I've seen many posts that Copaxone does a year free, I'm including a link that has all sorts of info for the companies and programs, I'm sure she will find something, myself I use MS lifelines to help me. I wish the best for the both of you
Take Care
Dave
http://www.msworld.org/forum/showthread.php?t=100575
Treatment (drugs) to modify the course of the disease do not cure MS, but they do reduce the frequency and severity of attacks and the development of new brain lesions. In addition, they slow down the progression of MS, reducing future disability.
These drugs can improve the quality of life for many people with MS. Therefore, most doctors suggest that treatment with one of these drugs be started in most people as soon as a diagnosis of relapsing-remitting MS has been made.
I am doing a more alternative approach with diet and an alternative drug called LDN (you can google it). It improves the immune system and has no side effects. It is only 2-300 dollars per year.
There was a post here last week about "Terry Wahl"which is a doctor that has greatly improved her MS with diet. It is very inspirational and I would recommend for both you and your daughter to see it.
When I first was diagnosed I went to a local MS support group meeting. There were maybe 20 very nice people there. Everyone except 2 were in wheelchairs. The 2 not in wheel chairs sought me out just after the meeting. They told me that they were the only 2 who didn't take the MS drugs. This can of course be accidental but still food for thought.
All the best to you and your daughter.