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  

[Momzilla]

I'm off to work, and am just learning myself.  The best place to learn is the Center for Disease Control website.  Google "CDC CFS"  I'll try to send a link later, must go now.  Not computer-savvy!  Also, I think although the symptoms are very similar, and the viral causes could be the same in some cases (HHV-6) for some patients, I think it would be unlikely for someone to have both illnesses, but I could be way off base.  

Have a great day!

Zilla*

[moeck]

This is one of the most important posts I have ever read concerning finding the answers to any disease or disorder.  You also have to stay open to all the possibilities.  I too was diagnosed with CTS in both hands.  Although my neurosurgeon and I agreed it wasn't causing all of my symptoms, he pointed out that as long as I was not working because of my other symptoms I should have the surgies done now and eliminate the pain the CTS was causing and take those symptoms out of the diagnosis equation.  It just happened that the surgeries were three weeks apart and the neuro at JHHS gave me my diagnosis in the period between them,  He also agreed with getting the CTS "out of the way" to prevent any further hand symptoms from being blamed on it.
He dismissed my brain mri as "nothing to worry about" but did say he would do further ones at intervals just to be sure.  He also gave me a diagnosis, CSM, that fits my symptoms and timeline perfectly.
So, hang in there, fix what you can and never forget that you can have more than one problem at a time.  Anyone with CFS has my full sympathy.  I have enough to do dealing with pain and physical limitations but at least I can be active for six to eight hours before crashing.  I can only  imagine what you must be going through.
moeck

[Heather3418]

Could you tell me alittle more about Chronic Fatigue Syndrome?  I have often wondered if I may indeed have a few problems going on...not just MS & Fibromyalgia, but believe it may extend to CFS.  Of course, I certainly hope not, have enough on my plate.  But I am "open to the possibilities."

Also, do you happen to know how many people that have been diagnosed with MS, also have CFS?  If you know....?  Some many symptoms overlap.  It's confusing for me.

Thanks all, Heather  

[BondyinOz]

Zilla,

Please do not fear a DX of CFS. I was diagnosed in 2003 after being ill for about a year. Yes it was a very difficult time for me as it was such an unknown quantity for those who knew little about it, but eventually I gained support from people around me. I also got in touch with people in my local district who had it too and we formed a bit of a support network.

Thankfully I seemed to shake it in late 2004 but suffered from relapses since then. I think I started getting over it due to my age - I was 19 when symptoms started in earnest and 21 when I got back to full time work. I am now in a full blown episode, as you know, but the unfortunate thing is that it is not CFS - I have already seen my specialist and he has ruled this out. He said that he was unhappy that I had had to return as he thought he'd gotten rid of me (heehee) but that I need to seek further help from a Neuro and an ENT (due to Sinusitis and balance problems).

So at least for me I have ruled something out and all signs point to something neurological. If you ever have any questions about the CFS please let me know.

Mel

[6-paq]

Very well said and I thank you for this thread.

I feel like I was thrown into this mess this year, having thought that my issues were ones that were easily curable.  I've vaguely heard of MS, but never, ever suspected it.

Now, I'm faced with a "possible MS" Dx and am waiting for the MS to rear it's ugly head.   Meanwhile, I have not given up looking for other causes of my symptoms and have found a few health problems that I am in the process of dealing with.

I am greatly in denial.  I keep wanting to find other reasons for why I feel like I do and for the things I experience daily.  Some fit the MS diagnosis, others do not.

However, as much as I want to ignore the 2 brain lesions, I can't and neither can my neuro.  He's stopped looking for mimics at this point, and since all other testing has been "normal", he's waiting for more debilitating symptoms.  

I do sometimes wonder if those lesions are from something else.  Something that is either worse or more curable than MS.    Yes, I can go seek a second opinion on the "possible MS", but since I am in that denial, I'm afraid that another neuro will change the "possible" to "definite".

I'm so, sorry for all of you that have been through the wringer.  ((HUGS))  I realize that my journey thus far has been minor compared to many of you.

Take care!  Pat :)

[Momzilla]

Heather, that was an excellent post.  Two excellent posts!  I have been thinking for a long while there has to be some way to gently say what you have said, and you said it beautifully.  We ALL have to be open to the possibilities of other conditions, diseases besides MS while searching for a diagonsis, newbies or "oldies!"  I'm with Nancy -- I am sort of coming to terms with my doc's suggestion that CFS may be my ultimate diagnosis.  This would be a hard pill to swallow for me, because there is no treatment, and becasue it's really socially unacceptable, if you know what I mean.  It sounds so foolish, because it certainly would be better than a degenerative illness like MS.  I don't mean to diminish what so many of you go through with that.  You all inspire me so!

It needs to be said, though, that one CAN'T ignore lesions on an MRI and signs of illness like loss of function.  If this is happening to you and your neurologist is giving you the "lesions are signs of aging" routine, find another neuro IMMEDIATELY, before you lose any more function!  Sometimes neuros are just twits.  We know this.  There's an old joke, somewhere is the world's worst doctor.  And someone's got an appointment with him tomorrow!  Think about it.  It's true...We still must advocate for ourselves, but remember that not every tingle is MS.  It's a fine line....

Anyway.  Well said, and point taken, Heather.  Sorry you had such a difficult time with your diagnosis, undiagnosis, too.  What a story!  Take care!

Zilla*