I'm so sorry to hear that you have not had your questions answered. Hang in there and stay positive. Lots of luck to you and be strong.

Thoughts are with you! I hope you get some answers soon.

Some of your symptoms sound like ones that I had. My diagnosis also took a very long time. I was also told that I had complex migraines or atypical seizures and put on topamax. I was diagnosed with several other disorders through the years as well. Have you had a VNG done when you were experiencing dizziness? I've had 3 done, I guess they don't usually do that many on people though. It's kind of an annoying test since during part of it they actually make you dizzy or more dizzy as the case may be. Anyway, with mine on 2 of the VNG tests which were done during relapses when I was experiencing symptoms the results showed that the dizziness was caused by my central nervous system - I was told this is common with MS. There are however many causes of vertigo and dizziness so it's important to find the cause. MS is very difficult to diagnose and many other diseases can mimic MS and MS can mimic other diseases. I was finally diagnosed when I lost half the vision in my left eye and went to my opthamologist who told me that I had optic neuritis. He told me that he felt that I had MS especially with my long history of other symptoms and suggested that I return to my neurologist and start treatment for MS. I did and she diagnosed me after examining my optic nerves. I had also had an MRI which showed 4 lesions, and a Lumbar puncture which showed an abnormal protein level, but no bands, weakness, abnormal eeg, neuropsychological evaluation which showed cognitive deficits and an abnormal functional MRI. I'm not sure why I was not diagnosed earlier except that she was just being very cautious not to misdiagnose me. I was treated with high dose IV steroids for a relapse even a few months before diagnosis at the request of my primary care physician whom I went to during a severe relapse. He called my neuro and told her that I was in bad shape and really seemed like I was having an MS relapse and asked her to give me solu-medrol. Even years before he had treated me with prednisone to stop relapses. We just couldn't convince the neurologists that it was MS.

So, sorry that was so long, but I really hope that you do not have MS, but you do need to get answers. If the doctor that you are working with isn't giving them to you find another doctor. If you think it's MS go to an MS specialist. I wish that I had known to do that. Take care.

Neener

My symptoms are staying much longer now. They used to last only 5 to 45 minutes at a time. Now they last hours or a day at a time then the may start again an hour later. I wish I just knew what this is so I know what I'm dealing with and maybe how to treat it. I read on here that people go several years without a diagnosis, then the doctor told me that if they haven't found a lesion yet that they never will. I don't know what to believe.

Having to deal with this without knowing what "it" is has got to be frustrating and scary. It must make you feel helpless, too. I hope you and your drs can find some answers SOON.

Without solu-medrol my dizziness and vertigo will just continue to get worse and worse I will have it day and night with brief periods of rest from it. It doesn't seem to matter if I am sitting, standing, or lying down. At times the spinning is so intense it is unreal. I have never gone to the hospital for it as I did not think they could do anything for me. Since it is caused by my brain / central nervous system there is not a lot they can do. Luckily treatment with S.M. for me does help within 2-3 weeks time. I have had 5 episodes which have each lasted for 2 and 1/2 months and one episode which lasted 1 and 1/2 months, I've also had shorter episodes. Luckily for me I have a strong stomach and the nausea does not last the entire time. I eventually adjust after about 3 weeks and it goes away for the most part. Drugs do help the nausea as well.

I do hope you get answers for your symptoms sooner than I did. I started getting the dizziness and vertigo 12 years ago when I first started working here where I now work at the university. I was walking into walls and so nauseated that I was in tears. I went to doctors and they did tests and could find no cause. Every couple years it would hit again. I was treated with steroids, MRI's were done, etc. Finally 12 years and many symptoms later I was diagnosed with MS.