There are so many people that remain in the land of limbo. No diagnosis, all kinds of different symptoms. No one understands more than I do, what it's like to not have a diagnosis of "something." Most of you already know my story, so I hesitate to repeat it here. But will give the "newbies" a very quick review. My first Neuro gave me a diagnosis of MS after the very first MRI. 7 lesions in the brain, one in the spinal cord and a host of detectable problems on my neurological exam. The Neuro was less than caring for his patients, so I went on to another Neuro. Despite my "evidence and diagnosis of MS," he took the diagnosis of MS away. I remained in limbo for three years, before finally heading to a teaching hospital in Virginia. I then was definitively given a diagnosis of MS. Five years passed with no treatment for the MS. .
The reason for my post is simple. I know how horrible it is to have all these difficulties with your body and not have a diagnosis. It's horrific, not to mention, stressful.
I would just like to say that you have to remain open to the possibility that your symptoms can be caused by so many disorders. So many of the neurological symptoms associated with MS, are also the symptoms of so many others problems. MS is not a clear-cut disease with a simple diagnosis. There are literally dozens of tests that have to be completed to rule "out" some of those 'other' diseases. Among that testing, there has to be time. Time to see if your problems relapse and remit or remain constant. This is very important information to a Neurologist, when he is trying to diagnose you.
We put so much stress on ourselves, when we say, "I just know it's MS. I am sure of it. My symptoms fit perfectly." Sure, it certainly can be MS, but can also be a dozen other neurological problems. Just keep your mind open to the 'other' possibilities. Nothing would be worse than to push for a diagnosis of MS, be treated as if you had MS, then really have another problem other than MS. Consequently, not being treated for that "other" disease.
Patience is key, when you are in limbo land. Are there some really 'arsehole' Neurologists out there? You bet there is. If you aren't getting any answers from your current doctor, than I highly suggest finding another one. Someone who will listen, but also someone that is not quick to jump to a diagnosis of MS. I shudder when I think of how many people may be walking around with a diagnosis of MS, when they actually have some other neurological problem, that is receiving no treatment at all.
During those times of uncertainity, remain open to the possibilities that it is something other than MS. I really do care about each and every member on this forum. I also care enough to want you treated for the correct disorder. More harm can be done to get a quick diagnosis of MS and really not have MS at all. I hope all of you can understand what I mean, but posting this thread. It's because I DO care, that I voice my opinion.
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