I was diagnosed with MS, I had my family doctor and the neurologist both confirm that based on my symptoms and the MRI results that it is MS.
I went to my neurologist appointment today ready to fight this with him on my side.
I thought we would start the process for the drug treatment.
Unfortunately there are more hoops for me to jump through. The Dr. said if it were up to him he would start me on an injectible drug, but our government put restrictions on the approval of these drugs. Basically even though my MRI is conclusive and clearly shows I have MS, and that I have the lesions in the right area of the brain and spinal column because I have only had one attack or episode I do not qualify for the drug treatment.
You've got to be fucking kidding?
He started to explain that there are some people with MS that only ever have one isolated incident and if they gave them drugs they wouldn't know if it was the drugs that helped or if they just weren't prone to further attacks. At that point my husband spoke up and said, I bet that patient didn't care whether it was the drugs or not they were just happy with their level of function. I can't believe that I had a conclusive MRI and that still isn't enough to get the drugs I need. The doctor said it comes down to money, the meds would be 15,000-18,000 a year and the government wouldn't cover it unless I met the criteria (see page below):
http://www.mult-sclerosis.org/DiagnosticCriteria.html
I was good, I was strong, I was calm, I was level headed but still I hit a big brick wall.
Tomorrow I start the process of contacting the MS society to get as much information as I can, line up an appointment with another neurologist for a second opinion, check out some books at the library to educate myself more on this disease for my next appointment and get my eyes checked at the eye doctor to make sure nothing has changed there.
What the government and this doctor don't know is that I am a strong woman and I will not sit back and accept this. I will fight for me and my family.
I don't know what to say.... I'm at a total loss. I uderstand that they need to see if drugs are actually effective, but perhaps in a group of people who are willing to take part in a study.
ReplyDeleteClassic inefficiency. I just wish I understood more about the healthcare up there, Rhonda.
Hugs that you're having to claw your way through to just get treatment.