Hello All! I am going to see a LLMD next month but in the meantime I am more or less trying to self diagnose...bad idea, I know! Do any of you who have Lyme actually have lesions on a MRI? I have one lesion on my spinal cord which kind of leads me to believe that it isn't Lyme and may be the start of MS. It sounds like Lyme can present in so many different ways and I am not sure I should even go see the doctor. Spinal cord lesion, numb arm, floaters, muscle twitches throughout my body and ringing ears. Does this sound like it could be Lyme or should I just stick with my neuro who says "possible MS". Any feedback is welcome!! Thanks!
It is possible you could have lyme. MS means "multiple lesions". Lesions can be caused by lyme. I did not have lesions on my MRI but others here have posted that they did so you should get some more responses. If it were me I would want to cover all bases. Lyme is a treatable disease. Many people were misdiagnosed with MS when they really had lyme. The symptoms can be the same.
I didn't have any spinal cord lesions, but numerous white matter lesions throughout my brain. They were nonspecific, but all the radiologists reports said demyelinating diseases like MS are most likely. I had all of your symptoms and more, and it turned out to be lyme disease.
I would get a western blot test run to make sure. The testing isn't the best, but the WB is the best test available. My screening test was negative, but the WB run through IgeneX was CDC positive for lyme.
Sometimes it is very difficult to differentiate between MS and Lyme. I wish there were more doctors that knew a lot about both diseases. You probably have to keep searching and keep both diagnoses in mind. I don't know how common it is to just have spinal lesions with lyme?? Maybe the LLMD can tell you. Do you have any lesions on your optic nerve, or vision loss?
I have lesions on both my brain and spine (T-spine.) I was (mis?) dxed with MS in 07, and treated for one year with daily injections only to watch my health decline. I had a CDC postive lyme test in September, and am currently on IV ceftriaxone.
Get all the testing and opinions you can. Neurologists tend to "brush off" lyme disease, so just know that going in. I could have both, I don't know, but like Patsy says, "MS" means multiple lesions (or scars). Lyme could trigger it, or it may just be lyme. God bless you, Amy
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