Diagnosis Limbo continued but new information
Hi guys,
Well, my 4 day stent in the hospital landed me nothing but holes in my body and I learned that I am horribly alergic to morphine. I don't like drugs in the first place; I especially don't like them now that I am losing congative abilities. After being seen by a physical therapist, speech therapist, occupational therapist and "in-hospital neurologist", my doctor says that I have symptoms of MS; all others mimycs have been ruled out. I just dont fit the lab criteria yet; the problem is that I never have fit into medical society's "normal range" on anything. That may come from being a child of Rh - mom and + dad; I'm # 4 of 5 and none of us were "blue babies" and they didn't have the shot back then. Whatever is the reason, I have a great ability to "bounce back and heal". If fitting a criteria of lab results means I lose that ability; I'd rather live undiagnosed. My doctor has me going to see a MS specialist here in Dallas that he believes will diagnose me with MS. I know it sounds crazy to be happy about it; who in their right mind would wish for MS? I'm not; these symptoms are not welcome and I wish they would just go away; but all of the "none answers" aren't making my symptoms go away. I'm getting worse and better, like a roller coaster. This is my third major event in as many years with little events tagging along like a bratty little brother on your first date. 
I wanted to ask if there is anyone in here who fits the 5% of MS patience who haven't fit the Macdonald criteria but were diagnosed with MS from their symptoms and cognative loss. After reviewing my medical records a little closer, he sees more symptoms that were misdiagnosed; going back into my early thirties. I think that with all I am going through now convinced him of this being MS. I am very happy I found this site; I don't feel so alone anymore. Thank you to those of you who answered my first question. Limbo sucks as much as the diagnosis; but at least I know that I a not alone! My docs last words to me were "if it looks like a duck, quacks like a duck and smells (?) like a duck; it's a duck. Pond or no pond." So, I'm a duck. 
Hi Holly,
It certainly does feel odd to want to get an MS diagnosis, but I understand how you feel. I'm not one of the 5% you mention although I was eager to get on with it and start one of the disease-modifying treatments.
I wrote a post just yesterday which touches on the issue of misdiagnosis and Limboland. You may want to read - Multiple Sclerosis: Psychosomatic, Neurologic, Mood Disorder, or Personality? Read the comments for an interesting discussion of Limboland.
Also, if you post this update in a Sharepost, you may receive more response. My suspicion is that the majority of folks who participate on MultipleSclerosisCentral.com do not venture into the Ask/Answer section.
I will be looking for an update soon after you get some answers. Be well.
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Hello Holly
Nice to meet you! Oh limbo land...it is not a fun place to be. Some people are in limbo for months and some for years. I have heard so many people say exactly what you are saying for being hopeful to get a diagnosis. Nobody wants MS. But it is more hard to be in that unknown state where you are left wondering what you can do. When you have the diagnosis then you can know what you are dealing with, begin treatment, and also gain support. So I totally understand what you are saying.
I think that sometimes...the diagnosis depends on the doctor you are seeing and how stringent they are to make the diagnosis. What information counts and what doesn't? I had my first symptom well over a decade ago. My doctor decided that my symptom of optic neuritis which happened so long ago...was relevant to my present diagnosis. Basically they want to see changes over time and space.
If you want to read more about how they make the diagnosis for MS, you can follow this link.
Anyways...you are in good company here. There are quite a few members here who are in your same boat of being in limbo.
If there is any information that you need please don't hesistate to ask. And support...you got it! Let us know what happens with you okay?
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ladygraycloud
Saturday, August 08, 2009 at 10:23 AM
HI, I TOTALLY AGAIN WITH BOTH OF YOUR RESPONDERS IAM IN LIMBOLAND WITH YOU AND HAVE HAD SO MANY TIAS AND SEIZURES AND I A STILL IN LL AND DON'T LIKE IT AT ALL--I DEAL BETTER WITH KNOWN AND NOT THE UNKNOWN FOR ONE THING ITS SCARY AS HE-- AND YOU REALLY DON'T KNOW WHICH WAY TO GO. I WENT THRU ALL THE STEP OF TAKING OUT ONE MEDICAL PROBLEM AT A TIME AND AT THIS TIME STILL DON'T KNOW WHATS WRONG WITH ME EXCEPT FOR THE FACT I HAVE A LARGE LESSION IN MY LEFT SIDE BRAIN TISSUE!
BUT THIS IS THE BEST SITE--JUST BECAUSE I HAVEN'T BEEN DX THEY HAVEN'T LEFT ME AND THAT IS A GREAT FEELING SO COME HERE ANYTIME WE WILL ALL TRY TO HELP.
TAKE CARE AND KEEP YOUR CHIN UP
LADYGRAYCLOUD/SUZANNE