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  

[BondyinOz]

Aww shucks, you are really going to make me cry :-)

[Heather3418]

I accept that hug...gosh it's great to have friends...they are priceless!  Angels with Invisiable Wings.  That's what all of you are to me....

[BondyinOz]

Oh how my eyes welled up with tears reading your post. Such heartbreak and agony you have felt. At least my family supported me after only a short time of not believing me and this year they've been behind me probably 95% of the time.

Thank you for your hugs - please accept mine in return.

Mel :-)

[Heather3418]

I have to stop being someone with MS and be a mother here....I wish that I could hold each and every one of you, that have not received a diagnosis of "something" and are still going through limbo land.  My heart just breaks for all of you.  I really mean that from the bottom of my heart.

When I was going through my limbo, I was hoping that my first Neurologist had it all wrong.  The second Neuro I went to, was highly regarded as the best in his field, where I lived.  So when he "took away" my diagnosis; while I did go through some shock, I thought, "Oh yeah, I just knew it coulldn't be MS.  I am finally going to be treated with something that only requires a little pill everyday."  I started to think of myself as lucky, cause this doctor said it wasn't MS.  Then I started to get mad.  This doctor wasn't trying to "find out" what was wrong with me.  He wanted to retreat me for my previous carpal tunnel syndrome, by doing NCS and EMG's.  He thought I needed another operation.  I would go to him about all of the symptoms I was having all over my body.  The heaviness in my legs, the spasms, the "water" running down my legs, the tingling and numbness going back and forth through my scalp on my left side.  I told him that I was having trouble with my speech.  Sometimes the words didnt' come out right.  Or I couldn't find the words at all.  The balance problems, the fatigue, the intolerance to heat, how my symptoms got worse when I was fighting on infection.

He explained away the lesions in my brain.  He said they were from past migraines.  He said the lesion in my spine was a "flow void."  An "artifact."  In other words, it was not a lesion at all.  I begged for something to help with my spasms...he presribed a drug for Parkinson's disease.  He would not prescribe anything for pain.  I went back and forth with this for three years.  I was pulling my hair out.  My family said that I was "melodramatic, my ex would even to tell me to "shut up and stop complaining."  "I didn't have MS, so I should stop my comlaining."

I was so depressed.  I was in so much pain.  No one would listen.  No one would help me.  My depression started to deepen.  I began not to care.  I stayed in bed all day, I didn't want to eat, I began to hate myself.  I was ashamed to go anywhere.  I was accused of being a hypochrondriac.  After all, one of the top Neurologists in the state was saying that it was not MS. (By the way, he is now on a "bad doctor" list on the Internet and his practice is almost non-existent)

I truthfully, didn't care whether I lived or died.  No one believed me anymore.  I suffered alone.  Then a miracle, I dropped into an MS forum on the Internet; told my story and was advised to "find another doctor and fast."  How was I going to do this?  I had to have a referral to get in to see a specialist.  I finally made an appointment with my family doctor and we sat there for an hour, discussing what was happening to me.  He finally found me a Neurologist in Charlottesville, VA., at UVA Medical Center.  I had my appointment.

Then came the battery of tests.  All of them, all over again. By this time, I was in a hell of a relapse.  The MRI's showed active lesions, not 7 of them anymore, but more, now in many places in my brain and that spinal lesion?  It lite up like a Christmas tree.  A spinal tap was immediately ordered.  Positive for oligliconal bands. (sp)  I was back in the Neuro's office within one week.  I was told there, that they wanted to start me on Avonex immediately. "The "MS" had gone untreated long enough."  The doctor's at UVA filled a complaint with the medical board about my previous Neuro and believe me, they got action.

I was given medication to help control my spasms, my pain, my agony.  My family and friends seemed to keep the phone ringing with their apologies for doubting me.  My mood lifted, despite having a diagnosis of MS...again!

I've been there and done that.  That's the reason for this post.  I DO understand where 'limbo land" exists.  I wish for each and every one of you, going through that limbo, to be lucky enough to find that one doctor who will not stop until they find out what is wrong.  I want resolution for each and every one of you, no matter what medical problem is finally discovered....  My heart aches for you...

I'm with you.  I understand.  I only want what is best for all of you.  As a mother, I again say, I wish I could hug each and every one of you that is going through this uncertainity.  It's awful.  I've lived it with you..

Best Wishes, Heather

[mokibear]

My biggest problem with the not knowing is not having any tests done to rule anything out. I'm left with probably not MS but can't say for sure. The only tests done were the MRI without contrast and a leg nerve test. This was at a MS clinic. When I asked about ruling other stuff out all I got from him was that they don't do that. They only deal with MS itself. The problem was that the first neurologist who did the in-office testing and history suspected MS although she said there were also mimics that should be looked at. When ego maniac head neuro came in, he blew at her for saying anything at all to me about her suspicions and that he was the one who would decide. After that it was down hill for me. The first neurologist is no longer there. I am now trying to find a new neuro.

I would be quite happy to have my old life back. I don't want to have anything wrong with me but I know that there is. The question is what? I'm frustrated at not knowing what I am fighting. Is it MS, I don't know. Do I want MS, does anyone? The ones suffering from it I'm sure don't want it. I just want to know what is wrong so that if there is treatment to help me then great, if not then I'll have to deal with that. But when you don't know at all and won't be helped due to ego problems that is sad indeed.

If this was just a nuisance problem then it would be not so bad, but its not. It's affecting my ability to work and live a normal life. I'm not a chronic complainer, and usually the last place you will find me when I'm sick is at the doctor's office. But this has me worried. I know in my heart something is not right and it is slowly getting worse. I try to exercise patience but it's not exactly my strong suit. The reason for me on this forum was to try to get information both on MS and other mimics. Not only did I find that but I also found a wonderful support system.

I thank all for their comments, advice and support. For those of us undiagnosed, yes we need to be strong and patient but when things get us down, it is nice to know we can come on here and let loose and ask questions. To those of you diagnosed, your advice and strength and comfort  that you show in spite of your disease is inspiring.

My thoughts and prayers are with you all

Moki

[AussyRose]

Not only am I open to other possibilities, but I am actually HOPING it is something else...

...like, "hey, you have blah blah in your back, go to a chiropractor."  

That wouldn't explain the optic neuritis, but hey, some people just get it.  I really think I have a neck problem and that's it.  I just was told they were doing an eval for MS by neuro, so I wanted to find out more about MS.  Now I really hope that's not it!

...but I still need answers!