Fed up with palliative and I'm ready for curative.
I am 35 years old and I have progressive MS. I was dx'd with RRMS in 2002 and it's been so difficult and life altering for me.
In May of 2002, I was in a car accident that involved me having whiplash. One month later, I was sitting in a movie theater watching Star Wars and starting in both feet I went numb all the way up my waist right below my chest. I thought it was a pinched nerve from the car accident. Oh how wrong I was.
A MRI with brain lesions sealed the diagnosis for the doctors. My spinal tap came back negative but they told me that didn't matter for it to be MS cause obviously I had multiple lesions so whoop there it is.
After a oral dose of steroids. I believe it was like 80 mg every other day, it took away the numbness but left me with a left leg limp. I'm not sure if the limp ever did go away or I just became better at hiding it.
I was then referred to a MS specialist and they put me on Avonex. They doctors never did a cervical spine MRI until 2005 and that's when THOSE dirty lesions showed their face.
Avonex did nothing to help me and only made me feel like crap even more. My husband gave me that nasty IM shot for 9 years until I said to heck with that. I was only getting worst at that point so I tried LDN for a year. I wasn't getting any better, only worst. Spasticity, drop foot, fatigue, both hands completely numb, horrible balance I feel completely pissed!
I never asked for this disease. None of us did!
Since about 2010 I've been researching MS and I really felt like they were on to something with CCSVI and I still think there needs to be more studies and work done on that front but the way I see it there is only one thing that is going to save us and that's regenerative medicine.
We all need to start demanding it from our health insurance carriers and our doctors. We shouldn't have to pay a dime for a stem cell treatment. The MS society and the other charities for MS should be funding more stem cell trials NOW! NOW! NOW! so the FDA can get it approved then the insurance companies will pay for it. Big Pharma needs to get with the times and let's do this. Switch out this palliative based medicine and get on board with CURATIVE medicine. We need regenerative medicine and we don't mean synthetic poison made to act like stem cells. We have the right medicine lying dormant in our fat (adipose) tissue. They can't patent that but they will try.
I cannot convey this enough to MS patients. Do your research and trust in yourself to know what you need to do to beat this monster. Research only leads to more questions, answers, and best of all HOPE!
How many specialists did you see before finding "The One"?