Multiple Sclerosis (MS) Support Group

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Brain & Nervous System
/ Multiple Sclerosis (MS) Support Group

Will I ever see a cure??

Amazonmom
Amazonmom
Well thats it....I'm sick of weak legs, non-existent balance, having to self-cath to use the restroom, no control over my bowel functions, plan my shopping trips based on my energy levels, having to ask my family to run outside to get the mail or bring up the laundry, being stared at by people who think I am drunk and praying I can fully make it though one day without thinking about how much this evil disease called MS has stole me away from my life. Why cant they cure MS if they know what its doing to the myelin sheath? I apologize but I'm having a crap winter and feeling pretty horrid about the state of ny future. Venting is supposed to make a person feel better; but I'm not there yet. Yikes!
RiS
RiS
After reading this it made me think if I wrote it as think the same as you do. I've had MS for 16 years and every year I hear something that they found out about this damn disease yet nothing happens. So, were does that leave one?I guess just deal with each day as best we can. All know is that I cry a lot! Hey, maybe that's the cure - cry it out of your body!!!!
dawizz95
dawizz95
If MS was contagious, they would have made it a PRIORITY to find out what it is and what can be done to stop/cure it!

I'm so sick of life in general that I'm about to give up.

There are no answers for this illness being it is now deemed "auto-immune" at present. Who knows what it is?

All I know is that it runs in families and that the big $$$ like diseases that can bring in a lot of $$$ and grant monies.

I feel like no one cares at all about any of that suffer with this illness nor to they care or believe us too much of the time!

I share your frustration! I don't know if this helps or not but I'm going on 20+ years with this crummy disease and the future is NOT BRIGHT for any of us IMO!
Keya0402
Keya0402
Omg...you just summed up my life. It is such a wonderful feeling to feel like someone understands.
wquintero
wquintero
hi everyone. If you suffer from MS and you would like to participate in paid surveys regarding the disease and drugs. Please contact me to wquintero@brandinstitute.com. It might help others in the future.
Thanks
deleted_user
deleted_user
I too think if it was contagious there would be a cure. My opinion, mostly about money.

Drug companies don't want to do the research without being able to re-coup their money plus a sizable profit to also cover drugs that don't make it through trials (the stages to allow a drug to be used by patients that are not in a test program). There are some orphan drugs that get special consideration but none I'm aware of for MS.

Insurance companies don't want to pay for high priced drugs like most MS drugs that don't have a sizable patient base.

The Federal government requires drugs to have an FDA indication for that particular disease before they will allow the drug to be covered by Federal re-embursement programs, meaning off label uses for drugs are not generally covered even though they might work.

Mine is PPMS. Primary Progressive Multiple Sclerosis. My insurance won't generally pay for drugs only approve for RRMS, or relapsing forms. This really limits me, and tics me off.