White Matter Lesions, Migraine, Lyme or MS?

I have had migraines since childhood.  When I  was in my late 30's, my headaches increased in number and I started getting numbness and other weird sensory symptoms.  They did an MRI and found about 13 lesions in my brain.  I went through testing for MS and the only other thing they found was  1 O-band in my CSF (none in the serum).   I later tested positive for Lyme disease, was being treated and had seen a lot of improvement when I had some kind of neuro "relapse" in January.  I did a follow up MRI in April and it showed 3 new lesions.  I had been told that my lesions were atypical for MS and Migraine until I went to a new neurologist and she thought everything was from migraines.  

Aren't the typical migraine lesions found in the cerebellum and the periventricular areas of the brain.  I don't have any lesions in the cerebellum at all.    I don't get an aura, although I do get numbness afterwards sometimes, but then I also get numbness/weakness/paresthesias that lasts for weeks and doesn't coincide with my migraines.

How is it possible for patients to even know if what they are being told is accurate.  The last neurologist thought that I shouldn't get ANY more testing done and to move on with my life.  I really WANT to be able to do that, but is that a wise thing to do?  I have been evaluated by an MS specialist, and have another appointment with him soon.  He thought I only had a small chance of  having MS at the time, and since my lesions are still atypical, I am sure that he will still feel the same way.

I have my MRI's posted on my photo page if anyone wants to look and give me their opinion.  IF I had been told from the beginning that the lesions were from migraines, I would have believed it.  I even went to a headache specialist neurologist and he said they weren't typical for migraine lesions....but he did give me a diagnosis of hemiplegic migraine.  I also had another neurologist tell me that he thought I had MS.  It just seems impossible to get any kind of accurate diagnosis.  It sure would be nice to know what these 16 brain lesions are from!!!

Thanks for listening,
Stacey

[delaware516]

I read your article. I have been in limbo for 10 years migraines or MS?? I am now going to Cleveland Clinic and I hope they can give me some answers. Did they ever give you a diagnosis?

I too had migraines from childhood and they found brain lesions in my mid twenties.  MS specialist thought it was MS, but due to lack physical symptoms they diagnosed me with monophasic demyelinating disease. I had a few MRI’s with more lesions after the initial one, then they stopped and MRI's have been stable for 7 or 8 years now.

Later a Neuro. doc (not the MS specialist) said that my migraines were the cause,  but as time goes on I have weird symptoms I can’t explain. Most of which are pain/facial neuralgia (this pain is what sent to the neuro so many years ago)  and swallowing troubles.

Cleveland did say my lesions are not in a typical area that migraines tend to hit, but they have not told me migraines are ruled out. They did tell me that they are in an area of the brain that MS tends to strikes however, they have not said its MS, further testing is needed. Yet another MRI……………..I hope you find some answers! I understand the frustration and concern to move on in life with such an uncertainty regarding your health. Good Luck….

Heather