I am new to this site, and I am looking for some help in ways to address my neurologist about my concerns. I have not been diagnosed with MS, but I have all of the symptoms and have had them for about 15 years. When they originally started they would come and go (typical relapsing-remitting), but now they are constant, and getting worse rapidly (secondary progressive). I have lesions in the white matter of my brain, but my neurologist has diagnosed me with severe chronic migraine (SCM) rather than MS. The problem I have with this diagnosis is that the only symptoms I have of severe chronic migraine are the ones that overlap with MS. Yet, I have all the symptoms of MS, including those that do NOT overlap with severe chronic migraine. I will admit that my lesions do look more like the lesions present in SCM rather than MS, but even a cursory search of medical literature (actual medical journals, not WebMD) is enough to tell me that atypical MS lesions CAN and often do mimic SCM lesions. But my neurologist won't even entertain the notion.
For reference, here are my main symptoms:
- Constant tremors all through my body. I feel them worst in my arms, hands, and head. Sometimes my hands tremor so badly that I can't hold onto anything or type at all (especially on my phone). And my jaw will tremor like my teeth are chattering in the freezing cold, but it's 90 degrees out. I have also developed a slight tremor in my voice just recently.
- Overwhelming fatigue. I could sleep 20 hours a day. Easily.
- Mental fog. I struggle every day with memory, confusion, attention, focus... I feel like I'm losing my mind.
- Language/Speech. I struggle with speech. I forget words (more often than most people and definitely more often than I used to). I also struggle with the flow of my speech. I am a teacher, and I used to be a great public speaker, but now I am just terrible. My speech has long pauses in it that I don't even notice. Sometimes I forget to finish sentences (again, I don't even notice half the time). I can still write fairly well, but spoken language is awful, which is terrifying for someone who makes a living at it.
- Leg and arm weakness. I have trouble walking more than, I'd say, 50 yards without taking a rest or having some other form of assistance, and my arms and hands have become very weak. Things I used to be able to do with ease just a couple of years ago are now nearly impossible.
- Bowel and bladder issues. In terms of my bladder, I have a lot of trouble with incontinence. I will often feel like I don't have to go at all, and then suddenly I have to go so badly that I will wet myself. With my bowels, I rarely have a "normal" bowel movement. It is always either constipation or diarrhea. There is no in-between.
- Terrible muscle spasms. I get these mostly in my legs and lower back if I try to walk too far. The entire lower part of my body will just freeze up on me. I also will get muscle spasms in my arms and hands if I exert myself too much (for instance, this happened the other day when I was trying to wipe down the kitchen cupboards and it will often happen if I spend too long typing at my computer). The worst, though, is the "MS Hug"-- the horrible tightening around the chest. My PCP has sent me through every heart test available and my heart is fine, so we know that it is muscular, not heart related. But it is awful. Every time I get that banding around the chest, I just literally end up in the fetal position in tears. I also have horrible muscle spasms in my sleep. My family says watching me sleep is a little like watching an MMA fight.
- Intolerance to heat. Any type of heat will instantly make my symptoms worse, especially the weakness. Exertion, showers, outdoor heat... doesn't matter. I will instantly get weak, faint, and nauseated.
- Double vision and swollen, painful eyes. The double vision is actually worse than just double. It's more like quadruple or quintuple or sextuple most of the time. Sometimes I will see 4 or 5 images in just one eye, let alone both eyes together. I have a horrible time getting both eyes to align. My Ophthalmologist says that my one eye tries to drift outward. This is a new development. Just one year ago at my last visit, this was not happening. Obviously, my optic nerve is weakening. I am also experiencing a lot of eye swelling and pain.
- Pins and needles, numbness, and/or a "shock" or "buzzing" sensation. I have strange sensations that run through my body all the time. But the pins and needles, numbness, shocks, or electric buzzing sensations are the most common. The other night, we had an electrical storm come through, and I swear I could feel the lightning in my body. I felt like Storm, from the X-Men. Yesterday, I felt like there was popcorn popping under my skin. But most of the time it is the "normal" MS sensations listed. I have one spot on my right thigh that has been numb for over 10 years.
I have managed to get the neurologist (well, actually, his PA, since he doesn't even bother to see me anymore) to schedule a nerve conduction study for Monday, but I feel like it is just to placate me and that they are still not considering MS as a real possibility. Does anyone have any advice????