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  

[Heather3418]

I am so sorry for what you are going through.  I guess after reading my posts, you know that I really DO understand what you are going through.  It is awful to NOT know what is wrong, even though your body is telling you that there is.

I hope you find answers soon.  While you go through this, remember that you will always have us to lean on.  God Bless you dear heart.

Heather  

[Nerve_Wrecked]

Thank you for such a fantastic post. I have always remained opened to the possibilities, and in fact doubt that I'll end up with an MS diagnosis (although I am still open to it!). I, like Oz "hang out" in MS forums because people there know what it's like to have weird symptoms, people understand how I feel.

My husband is very good, and very understanding, but for the most part, the people I know don't "get it", so I seek out people who DO "get it", and for me, that means MS forums.

Now, would I be devestated to get an MS diagnosis? No, I really don't think so, I'd be relieved to have answers, and relieved to have a name to this illness, and some ioda of what to expect for my future (although MS is pretty  unpredictable, I do realize). I'm already very confident that whatever I AM ill with is permanent and affecting the CNS. So, now it's just a matter of finding out what it is, and if there's any treatment that can help.

Thanks for the great post (and replies). It's good for those of us who don't know what's going on to remember there are other illnesses out there. I don't think any of us WANT to be diagnosed with MS, I think we just want to know what it IS, and what we can do about it (if anything).

Christine

[Heather3418]

Maybe the question we should ask these doctor is:  "If it were your loved one sitting here in front of you today, with the test results that I have and the symptoms I have, what would you tell them?"  "Would you dismiss them or try to find out what is wrong?"

Boy, have I ever wanted to say that to a few doctor's I have known over my lifetime.

Heather

[biowham]

Good post, something I say to myself a lot, although I can't get anyone to give me the possible differential dxs--except, of course, the neuro who thinks I have half of a conversion disorder. I feel for everyone on these boards. I have a great background for understanding what the doctors are saying to me and for trying to sift through the data for what is important and relevant and what isn't, and even with that, these two neurologists and the neuroradiologist have among them left me completely bewildered. I can't imagine how confusing navigating these waters must be for people who don't have the scientific/medical background I have, or who feel too reluctant to speak up to their doctors and really require solid answers, instead of equivocation.

I'm 39. I have three "real" lesions and some punctate foci. Negative CP. Neurological signs. And two MDs so far can't seem even to agree on the results of their in-office neurological testing, even for something like reflexes (although they both, at least, find me to have +Rombergs, bless 'em). I really feel for people who have to deal with this stuff, with the fact that MDs sometime seem to be diagnosing with palm reading, instead of data. I am *not* slamming MDs in general--three of my children's godparents are doctors--but I definitely feel that there should be a reduced display of confidence from them when they can't even come to an agreement on some basic data. They shouldn't be so firm or dismissive with patients; they themselves MUST be aware of these wide variations of results of their testing.

E

[spastic]

   Hello my Guardian Angel.  I just read your post on Stay Open to the Possibilities. I now see you through your shoes and your story what you personally went through in limboland and it got to me. My heart broke for you.
    Your my angel and helping me while I remain in limboland I just want you to know, I am here for you as well. I will have to warn ya though, spazie legs arent the only thing-sometimes my head is spazie as well! Big Bear Hug to ya Heather, Spazie legs ada

[tdr1013]

these are great posts, am so scared right now, this all started about 2 yrs ago after it went away and then saw neuro passed exam reflexes,gait,babinskis,and several other things put it to rest moved on with no problems or symptoms at all, until got a bad head/chest cold just about 2 yrs after initial symptoms as head/chest cold symptoms subsided began feeling light nausea, imbalance,blurred vision on things close up only, but no eye pain, muscle spasms all over, mild pins and needles, all of these I had 2 yrs ago except nausea, also thi time pain when swallowing feels like a bruised adam apple after about 2 weeks of this now, seem to have brain fog, very high anxiety of course now waking up with numbness in hands and mildly in foot but always the side im laying on, goes away as soon as i move over. I am 38 yr old male, engaged 3 children, 19,12 &4. & 1 grandchild newborn, getting ready to get married start new career, so this is very tough, trying to put it in gods hands. originally the symptoms first time lasted 2 to 4 wks, this time 2 plus so far.  just wanted to share my story any response would be appreciated.