Undiagnosed, numbness, tingling, Muscle weakness and more
I am 46 and I have something going on with my body and can’t get answers. Maybe someone here has something similar or has some idea of where I could turn next. Last December I woke up with numbness and tingling on my right side (arms and legs). 2 weeks later, it was on my left side too, and sometimes my face. I had an MRI, which showed lesions in my brain, but not my C or S spine. I had a spinal tap (specifically for MS panel) and it was clear. I had 2 EMG tests, both normal. I have had tons of bloodwork done, ruled out many autoimmune diseases, viruses/ infections, toxins, etc. My bloodwork is all normal. I saw an MS specialist who ran a 2nd MRI on brain and C spine, all the same (this was 6 months after the first), nothing lit up. No lesions in spine. So they ruled out MS. They thought maybe Amyloidosis, then ruled that out. I was tested for small fiber neuropathy, which was then ruled out. The numbness, tingling etc has never gone away – at all. It sometimes also includes burning, electric jolts, cold sensations, tightness in the muscles (that is pretty constant now), constant weakness in muscles (going up stairs fatigues my legs quickly when it never used to), I have trouble lifting my left leg – my muscles won’t let me. After a 1.5 mile hike up to a cave, my legs were shaking and in pain the rest of the day and I was in a lot of pain at night – legs on fire. I can’t overdo it, but I also have to move my body or I hurt more, so I walk almost daily. This summer I lost my appetite, felt sick to my stomach a lot, had bowel issues, and lost 18-20 pounds in about 10 weeks without trying. Then that tapered off. A couple of months ago I started having bladder issues where I had to go frequently -sometimes 4-6 times in an hour, each time feeling urgent, and something coming out each time I went. I have had some light headedness and get off balance sometimes. I had a tilt table test and a gastric emptying test, both normal. While I am glad that my body is so “normal” with all of these tests, it leaves me with no answers and I feel like I have hit a dead end. There is something going on, but nobody can figure it out. I have been to 3 neurologists plus a neuro/ pain management dr. I am not in constant pain, but I am in constant discomfort with the neuropathy in my legs especially. And they ache all the time, like sore muscles from a big workout. The next step is another EMG in December, but I am sure it will also be normal. I am frustrated and feel like I can’t do anything because I don’t know what is the cause of the problems. Any advice, ideas of what to look at, try next, etc would be appreciated.