Possible MS (limbo)
 

Hello everyone,

I'm just new to this site and I have a possible dx of MS. Been in limbo for almost a year. Optic Neuritis was my first major sx. I have had nerve issues in my left leg since 1999. Spine isssues as well. They treated me single with every sx. Now my neuro is going back over my history to see if anything might have come up before. Last April I lost the ability to read in my right eye. Thank God for my left eye to compensate. Right eye - words are hit and miss and the ones I can see are blurred(never recovered). My left lower quadrant of the right eye is getting worse. My periphrial is broken up. I notice it when I drive. The white line on the side of road is broken. Opthamologist says my eye went from 20/30 to 20/100. He sent me for an MRI (2nd one). Will know more next week. He is checking the optic nerve and for lesions. I have some of the sx of MS. I have the fatigue, spasticity in my legs, short term memory has been lost for the past year and now i can't find the right words to say,burning nerve pain at the top of my head, nerve pain in the middle of my spine. These symptoms all come and go when they feel like it. I am keeping a journal so that I can show the neuro what is happening between visits.

My question to you all is he put me on neurontin for the leg pain and numbness at night. I do have it in the day but its mostly at night. Has anyone else experience low back pain with taking this drug? It seems to come on after about 4 hours of sound sleep. After that, I can't get back to sleep. Thank you :confused:

Welcone to the club, you never wanted to be a member of..:hug: So sorry for your pain and almost DX.

I don't like any of the meds docs give for muscle spasm pain, because IMHO, they make your muscles weaker. My lower back was always my problem too and that hurt worse than the spastic legs.:eek:

Just me, but I'll take the, not so bad. tight leg pain, to my lower back going out on me.

Stay with us and let us know how your journey's going.:)

I have not tried that drug although it is commonly perscribed.
I asked my doc for Klonopin (low dose) so I could sleep through the discomfort.
It is not a pain killer....but more like Valium etc.
Good luck to you :hug:

My neurologist prescribed Neorontin and Vicodin, Didn't like Neurontin for me, so don't use it. Vicodin (prescribed by neuro) is my current drug of choice. It never gives me any sense of recreational drug use (none) but because of opiate quality I get sleepy. I do get break-through pain and if I have to pee in the night, pain starts, but sitting in my wheelchair, slightly tilted back, the pain is quite managable and I sleep. Sometimes I get pain, sometimes not :confused:.

Like House, I tend to pop more than I should. I take one at 10, a second around 45 minutes later, read some, go to bed and sleep until 5:30 or 6. DH gets up early also. I get no side-effects from it. I do no other meds., this works for me. But we are all so different.

My PCP prescribed and insist I have on hand Baclofen which I have never used and know nothing about. Everyone is so different from each other,

Welcome to NeuroTalk:

I think that anyone with a questionable MS diagnosis, and long term neuropathic symptoms should investigate B12 levels.

The blood work is easy, but interpretation of it is murky.
Doctors in US still think low levels are "normal"... in fact many people below 400 US units can have nerve damage.

This is my B12 thread, with medical links explaining:
http://neurotalk.psychcentral.com/thread85103.html

Post #70 is a paper by Dr. C Snow, with details, as well as the AAFP article from 2003 in the first posts, made for physicians to follow the NEW treatment protocols for low B12.

Also to consider is gluten intolerance. I have seen some people over the last decade on forums, with provisional diagnosis of MS, actually have a gluten problem. But your symptoms do seem more severe than the typically beginning MS patient.
But it is something to think about.

So if you haven't had a B12 level done recently, or you were never given the numerical results of that test, I'd do that now.
It should really be ruled out.

hello and welcome. I too started out with optic neuritis, and it was horrible. I know how scary it can be.:hug: pull up a chair, grab your reading glasses, I think you will find many wonderful pieces of information here.

B-12
 

I had various blood tests performed and my B12 was one of them. It is normal.

When you say your b-12 was normal, what was your b-12 level? Did your doctors tell you what level your b-12 was, or did they just "it's normal" without elaborating?

B-12 Level
 

Erin ...My doctor said my B-12 Level was 932. Sorry I had to look it up. Since I had to go through all these tests, I am keeping a log of what has been done.

If that test was done recently, you can rule out that as a cause.

It is always best to check the simple serious things first.

Many doctors do not.

Thanks for posting that. I can now retire and let the MS experts have a go.