First had neck pain w/arm pain and tingling. Then sciatic pain. Sciatica got better but low back got worse. Then right leg weakness. Now left leg too. I now crawl up my stairs. Tests: MRI C-Spine Lots of DDD, spurs, 2 bulging discs, and spinal stenosis, one area slightly compresses a nerve. L/S MRI More DDD, 5 small to moderate herniations. L5-S1 slightly compresses a nerve root. EMG/NCV bilateral carpel tunnel and C5-6 nerve irritation. Legs: motor nerves appeared ok. I have "Distal sensory peripheral polyneuropathy”. MRI Brain w & w/o contrast: “non specific scarring”. It is getting harder to walk. I am so fatigued. No foot drop. Legs It feels weak some muscle tighness. At worst is like I tell my leg to move, & it didn’t get the message, no response. Now I also feel dizzy. Some face pain so doc thinks it’s sinusitis. Neurosurgeon sent me to neurologist since weakness could be non spinal things, like MS. Otherwise suspects the neck. I'm having more tests. he feels MS is still not ruled out, MRI C-Spine w/contrast & spinal tap. Looked up MS, I'm shocked how much is familiar. Around 1998, I went through a period of joint pain in hands and knees, and severe fatigue. I was told I had fibromyalgia. I assumed the fact that I was a bit dingy and sometimes felt like I shouldn’t drive because I couldn’t seem to pay attention, and skin even hurt was all part of that. I eventually got over it after about 6 months. I wonder if it was an initial presentation. I drive my husband crazy sometimes talking, I get stuck on words. I had a 6 month migraine about 4 years ago, and now get them frequently. At the same time I was had sharp pain around my mid back and around my chest. It would last from seconds to hours. I did get that worked up, & my heart is healthy. It sounds like “MS Hug”. Over the last 6 months as I’ve gotten physically worse, I’ve get overheated and break into a sweat easily.. I usually do profusely after I shower, & wake up soaking wet.
What about lyme? The hand and joint pain could be lyme, and the night sweats could be another tick borne coinfection, babesia. Lyme is commonly misdiagnosed as MS because there are still disagreements about the proper testing for Lyme. Lyme can cause lesions in the brain identical to MS.
"Fibromyalgia" means pain and stiffness that they don't know the cause, just like "MS" means lesions in the brain or spine that they don't know the cause.
Getting the standard Lyme test at your doctor will not diagnose an old case of Lyme. If they do run the standard test, you need to specifiy"report all bands". There is also some stuff they can do with a spinal tap, etc. The best lab to use apparently is Igenex. You might need to find a lyme literate doctor in your area. Frequent saunas can help keep Lyme at bay and also it does better with antibiotics. The diagnostics to prove Lyme could cost you $1000 if your insurance does not cover (Igenex labs aren't). However, Lyme is currently considered a clinical diagnosis (not based on labs alone, more on symptoms and history).
I myself was diagnosed with MS but I am going through as much testing as I can afford to try to see if it was Lyme. Wish we had done those tests earlier but doing what we can now.
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