White Matter Lesions, Migraine, Lyme or MS?

[SOONERMOM]

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

[ginni220]

I have been doing so much research on Lyme because that is the only thing that fits how I have been feeling. I also have white matter brain lesions, two years ago I had 1 now I have a lot they didn't say how many just a lot. I have horrible migraines and because I used to get them when I took codeine they say I have a history of migraines. They are so much worse and trips to the ER morphine doesn't touch them. I am on daily medications for migraines now, anti-depressants, anti-inflammatory's, muscle-relaxers and the only pain medication they will give me for all the pain I am in is tramadol. I have lost most of the muscle mass in my arms and back, I have numbness on my left side that at times will make it to where I can't walk. I have trouble thinking, at times I will forget where I am, or what I am doing. I can no longer work. I am so tired at times I can barely lift my arms. Some days all I do is sleep other days I cant sleep at all. I am trying to get some kind of medical care but so far no luck. Doctors in my area say Lyme disease is not in this area. There are documented cases. You said you were diagnosed with Lyme, how long were you treated? It can take years on antibiotics depending how long the infection was there also Lyme also has other infections that sometimes go along with it that need treated with other medications on top of the one for Lyme. I know there is something wrong with me and I cant get a Dr to actually listen to me. The neurologist I was seeing told me I was too focused on a fall when I really went down hill and I was trying to tell him what was going on with me that he couldn't help me there was nothing wrong with me I just had migraines. If that is the case why are the bones showing in my arms? Why don't my hands work right anymore? The people who know me know something is wrong and I am not trying to get something for nothing. I have worked hard most of my life and I am not usually a complainer about pain. If you are worried about MS get your Lyme checked again your treatment may not have been long enough. MS and Lyme have the same symptoms. Do some research. Don't take my word for it. I wish you well.
Ginni

[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