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HELP! Need advice
Nov 11, 2011
By way of background, I have been dealing with an EXTREME increase in pain and my shoulder blade over the past 3 months. Solumedrol, narcotic pain meds & nerve related meds haven't touched the pain.

After being told in July my MRI was clean, no new changes, all is great as it can bei asked if this could be a non-MS issue. I found out that my neuro hadn't scanned my cervical spine since '08 despite knowing I had lesions on my spine. So a scan was done in Sept.

When I went in to see the dr for resultsi was told I had new lesions on my spine, the Rebif wasn't helping enough and I needed to go on Tysrabi because of the location of the lesion and potential it my have to impact my mobility.

Despite asking VERY pointed questions on the extent of my pain and the potential for the cause to be unrelated to MS I was told it was the new lesion in my spinal cord, the location being at the core of my central nervous system that was the reason for the significant pain.

I've been trying to find the right level of pain management meds while waiting to be moved on to Tysrabi. It's been about 6-8weeks since my MRI.

I called the neuro yesterday for a refill ofnmynmeds only to be told the dr wants to do a nerve study to se if something besides MS is causing the pain b/c after all the solumedrol I have had, i should have had some relief. Well I haven't had steroids in about 6 weeks so I went back to HUH? Where did this come from. The MRI seems to show a bulging disc that I was never told about.

This is the 3rd issue I've had with this neuro (1st was being told what actually turned out to be a total loss of vestibular function he said was side effects from vertigo - the 2nd being told I didn't have MS by phone on a Friday and by the following Monday was told to come in only to be told I do have MS and now this).

Before I went in for the MRI results, my insurance was requiring the neuro to re-certify the need for Rebif. That was done on a Thursday. The following Monday I was told he wanted to switch me to Tysrabi because of the severity of my situation Well why did he verify the need for Rebif one day and 2 days later I am told I need something else. Did he really look at my chart or did a nurse do it?

I do have a lesion on my spine but since he's not done a cervical MRI since '08 (despite knowing I have transverse myelitis that we have discussed often) until a few months ago so is it really enough to change to a risky med? How long has that lesion really been there?

I don't know what to do. I have zero faith in my neurologist which basically can't be how i deal with mynmedical situation. He's the one "MS Society approved" neuro in my state. There have been SO many mishandlings and bad communications over the past 4 years I don't know how I can trust his advise.

What would you do? Would you go on the Tysrabi? Get a 2nd opinion? I'm so confused right now. Lost. Angry. Confused.





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