I am sorry that you are having all of these things going on with you. After reading your post, I ended up with questions. So, I thought I would ask them and maybe it will help me and others here in the forum understand a little bit more.
You say "nerve damage" flare up. Are you referring to the TN that you described or other symptoms you are having? If it is not the TN, what symptoms to you refer to as nerve damage? How often do you get these flare ups?
You also say unable to walk. Can you clarify that? Do you mean your legs feel too heavy...your legs won't hold you up...or they simply don't work...or whatever happens to you, if it doesn't fit what I wrote.
When you went to the neurologist, did he do a neurological exam on you? Did he find anything wrong in the exam? How were your reflexes? Besides getting the MRI, did he give you any thoughts on what your symptoms may be from or anything like that?
I am glad the neurontin was working for you. Yes, it is expensive. There is a generic that works just the same, gabapentin, but it is expensive too. You say that you are taking muscle relaxers on your bad days now, which is about once a month. So, do you get these "nerve damage" flare ups once a month then? And the muscle relaxer helps ease these symptoms? What muscle relaxer are you taking?
I would say your first step right now would be to get health insurance. The tests needed for neurological issues are not cheap and neither are the specialists or the drugs used to ease some of the symptoms. If you cannot afford insurance, do you qualify for your state's insurance?
In my opinion with what I have read, your symptoms don't scream MS. But, I would be concerned with the headaches. MS is a dx of exclusion. So, basically you would be tested for all sorts of things first to rule them out. There are many, many MS mimics. There isn't a test that can be done that will dx MS. The doctors use all of the many tests they may give you, after ruling out the other things, and make a determination. I am afraid this can be a long and slow process.
I would like to guide you to our health pages. Here is a direct link: http://www.medhelp.org/health_pages/list?cid=36. There
is a huge amount of information on the ins and outs of MS. It is a wonderful place to start.
I am so sorry that you are going through all these symptoms, especially without relief. I don't know if I helped you any or just added to your confusion and frustration. :( I am sure others on the forum will pipe in soon with there opinions soon.
Welcome to our forum,
It does sound like you definitely should be getting at least a brain MRI, as the headaches you describe sounds like they need to be checked into. I would not advise getting an LP (spinal) without first getting an MRI.