Hi Twee,

I agree with what the others have already said, Doctors are learning from all of us and I think sometimes, they are afraid to admit when they don't know something (I know my doctor is!).

I don't have MS although I do have a condition that is fairly similar in many ways. I was told by my Doctor that it is in the same "branch" of conditions as MS and is the closest neurological condition related to MS. I sprained my left ankle in March 2007 (2 years exactly today) and had to see over 20 doctors before I got an accurate diagnosis. It took me 5 months to finally see a doctor that knew what was going on and believed me and beforehand, I was also told that I had conditions related to anxiety ... even though I had a rotated, swollen and blue leg!!!!!!

I agree with what some of the others have said, if you aren't happy with your doctor, please go and see another one that specialises in MS and other similar conditions (Neurologists, Pain Management Doctors etc). I KNOW it is really stressful but trust me, once you find a proper doctor that is willing to listen to you it is well worth it!!

I know it feels like a long time to you, but 3 months isn't that long really. Many people have had to wait a lot longer before they got a proper diagnosis! With MS, it can take a long time for all of the tests to come back and to get an accurate diagnosis. My nanan had Progressive MS and it took 4 years for her to find out what was wrong with her - the doctors knew 3 years before that what was wrong but never admitted it - my mum found out by looking through all of my nanans records from the hospital!

Take care of yourself and know that we are all here for you and do understand some of what you are going through and how frustrating it is!!

Please keep us updated and I wish you the very bst of luck!

Welcome Twee...so sorry for all you have been going through. I too learned the hard way that docs SEE what fits their training and expertise and if you dont fit nicely into the boxes (tests..criteria) that they know..well..they dont know what to do with you.

Many also do not have the time to advocate in your behalf anyways..thats our medical system. I have had good PCPs who do advocate. Each specialists I went to had their diagnosis..or dismissed me. I like one patient said she was giving up MDs for Lent !!!

Last year I swore off docs for awhile. Then I got a good PCP..and now I am starting to find the right docs and get answers. I finally got MS ruled out and I am fine with that. There are many disorders that cause neuro symptoms even toxicity..heavy metals in our foods..drinks..add up to some nasty disorders.

A good work up is much needed. Anemia..cysts..and aneuryism ARE serious enough!! I just left 3 neuros..all good..all trying to figure things out..ruling MS in..then out..then all kinds of things..until I met an autonomic specialist who put it all together for me.

Seems we often have more than one disease going on..each making the other worse. I too dont fit in lab results which makes diagnosing so much easier on MDs rightly so.

Are you a woman of faith? Cuz once i found the BEST doc by closing my eyes..saying a prayer..and pointing to the yellow pages. I DO believe in being spiritually led. 3 months may seem long to you..cuz you just haven't found the right doc. It could be an endochronologist.. or someone at MAYO

I will pray you find the answers you deserve..but..be prepared you may need more than 1 doc. Do you have a really good PCP?? They are supposed to help coordinate this for you..

Warmly Jan

Just another symptom to add to the list...stroke. They unsure when it happened only that it is now showing up on the CT scan.
I am set to see a MS specialist mid April. Thanks for all the advice everyone!!!..I am a woman of faith Jan..and I am praying God thumps someone in the medical community over the head with a half ounce of wisdom to help solve this nightmare!
I had a full work up by cardiology work up after the stroke discovery and that check out strong so if nothing else thats good to donate
I will keep everyone posted and hopefully help a few along the way once I solve this mystery.
Does anyone know what tests are used to determine if MS is positive besides a positive MRI for brain lesions?
Thanks again everyone!!!

good luck hun
been having sxs not all similar to yours, but having enough troubles in my life due to the symptoms. been dealing with 9 long years!!

find a specialist, some things do not show to drs right away, and some doctors are clueless, depends on the doctor. They do like money yes hehe

I do have to say, Migranes can happen without headaches, not sure what they are called but do know a friend that suffers migrane type without headaches. Just do not recall name of the migranes. hugsss all,sarah

hi twee and welcome to NT.
it sounds like you have a lot on your plate and enuf to be worried about.
try to make a plan of care for yourself with your team of drs. i've found that having a plan cuts down on stress.

i agree that once you find a team of trustworthy drs who listen to you and validate your dx's and sx's you will be a step ahead. sometimes it takes a while to find the right people. just remember that the head of the team is....YOU.

get copies of all the tests you've had and the mri's etc. so that if you see others drs you can bring your records with you. it's a good idea to start a medical record on yourself. sometimes for other drs, sometimes for taxes etc.

good luck and please keep us posted.

KENTUCY...welcome to NT.
it may be a good idea to start a separate thread and introduce yourself. you will probably get more responses that way. i was dx'd only on my mri results. i had brain and c-spine with and without contrast. a bit later i had an LP and had 2 O-bands. that's considered + for MS. keep searching for answers. sometimes a 2nd opinion is a wise move.

hope to hear more about both of you.

Hi Twee,

Why were you on Topomax and for how long? It can cause dizziness and MANY other side effects, apparently including a stroke.

http://www.cbc.ca/news/background/health/topamax.html

Strokes and migraines can cause brain lesions.

Cherie

Hi i am new to this so please excuse the way this may sound. Last August I was told that i had MS just because i has a seizure. They did a LP or spinal tap, and tried to do an MRI but because i cant stand small spaces they were unable to complet it. The Doctors told me that the LP showed that i had ms but when i went to another doctor he told me that the LP came back negitive for ms but from what he could see on the MRI there were alot of leasions show up. So they still dont know. what do you all think? I can use all of the help i can get. THANKS

Hi and welcome to NeuroTalk! I have MS but have never had a seizure. I'm not sure that's one of the things they look for when diagnosing. Are you seeing a Neurologist or just an GP? If I were you I'd take all my test results to a Neuro who specializes in MS and let them try to decipher them.

Keep coming to this forum......you'll find lots of support and good information from people who live with MS everyday.

Glad you joined us!