Stay open to the possiblities....

[Heather3418]

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.

Best Wishes, Heather  

[Heartshome]

Very well said. I struggle with this as well. Here's what I've heard from my doctors:  First" it's probably MS. Then perhaps Lupus, then I"m told that it's none of the dreadful diseases, so don't worry about it. Then, it's probably MS again. Then, it's not MS because my MRIs are clear, but something neurological is obviously going on. But...it's progressing very slowly, so that's a good thing and don't be in a hurry for a diagnosis. "

I know that I should just let go and get on with life as best as I can. Thank God that I am better off than most. It's been approx. 8 years and I still am able to get around just fine (except for the days that I have to hold on to walls and go up stairs holding on due to dizzyness.) I read a great quote last week that went something like this..."If you have an undiagnosable illness, you'll either get better, die, or live a long time feeling miserable. There's nothing that can be done, so stop worrying about it and get on with the life you have." Well, I'm trying to take that advice.

I don't have a brain tumor, I don't have ALS, I don't have lots of other letter diseases (CIPD, etc.) and they can't diagnose MS, so for now I eat a super healthy diet, get tons of rest, reduce my stress levels, and exercise as best I can. I have got to let this go and stop thinking about it.

Thanks.

[BondyinOz]

Hey there.

I am definitely open to any and all possibilities. Naturally I would prefer whatever is going on to be treatable, but I'll deal with it if that's not the case. I sought counsel on the MS forum not because I'm 100% sure that I have MS, but because some of the symptoms I have do present in MS patients, so the people who are here can relate to what I'm going through and that makes me feel a lot better.

I have spent a long time in limboland so I'm used to the waiting. I suppose I am just young and impatient, annoyed that I can't really begin my life at the moment because I'm not well enough. I keep stopping and starting, having to retrace my steps and start again with each little set back. Now that I'm finally in what I believe will be my career for the forseeable future I want to make a name for myself, do the best I can and release myself onto the world :-)   (Watch out, here I come!)

I know that being unwell is horrible for people at any age, and I shouldn't be complaining more than others 'woe is me' style, but I have already grieved for a life that has been denied to me when I had CFS in a serious way. It took a lot from me and I dealt with it, but I feel like I've done my time and now I should be getting on with things, not getting sick again with yet another 'unknown' problem.

Anyway, I will keep my mind open and my head up as much as I can. I appreciate your post and thank you for your kind words as always :-)

Mel

[jono1970]

Thanks for your words of wisdom. I understand completely and appreciate the time taken to write to us 'newbies'

kind regards,

John

[Nanners123]

Interesting that you should post this today. I woke this morning thinking of all I have been through and all the different symptoms. I have an appointment Tuesday to go over the latest MRI's. I am mentally preparing myself to be open to all possiblilities. I think my testing thus far is leading away from a diagnosis of MS, but I know something is not normal. I have posted in the past my various symptoms as well, so will not go into it all. But when I can't get a comfortable night sleep due to various parts of my body deciding to go numb or tingle and wake in the day and can't wipe counters, walk stairs or do my hair due to burning and painful muscles, when minor twitches in all different parts of my body worry me, I say can this all be some sort of normal?????

No doctor to this point has been concerned, by that I mean I am not dieing. Current neuro whom I am praying will be comprehensive in his search with me has already said, "you have nothing big, bad or ugly going on". I am beginning to become open to the idea that all of these idiosyncratic symptoms are all my version of normal OR forget about them because they are not killing you.

All of this is frustrating and I think the part of me that is a perfectionist is causing this frustration. It is very hard to sit back and say everything was fine years ago and now I have these little bothers going on all over my body but no worries, you don't have a tumor, cancer, MS or some other serious possibly deadly disorder!!!  I am resoving myself, however, to this possibility and do try to live my life with positve vision and forward thinking!! Thanks for the post, it help to validate what was already going on in my mind. I hope it can help others as well. Have a great day all.

N