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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.
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@lmmaldonado
Read about B12 Low vitamin B12 levels may causeTrusted Source symptoms such as:
tingling in your hands and feet
difficulty walking
confusion and memory loss
depression and irritability
problems with smell, taste, or vision
heart palpitations
fatigue
headaches
pale skin
weight loss
glossitis (a painful, smooth, red tongue)
You sound too young for peripheral artery disease. Have you had an ultrasound to test arteries and veins? Good luck
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2 Reactions@vgen
Yes. I had an ultrasound of my legs and feet. My doctor said my vitamin B12 levels were good. Thank you for this information.
@lmmaldonado
Which country are you residing in.
My symptoms are more on tightness, squeezing, very painful.
I follow nutrition diet, heavy on protein and manage to walk but still nobody can solve my condition so far. I was also very active in golf and work before this. I am 67 now and have had this for 2 years already.
I also keep praying every day and hold on to my faith in God.
@jair19 thank you for the response. I'm female, 34. My OB didn't see any signs of perimenopause from a gynecological standpoint but I suppose you could have other effects from perimenopause first, with gyn. effects later.
It's striking to me that I've found various folks who seem to be hit with some sort of neurologic component (e.g., the tingling/numbness/jolts, of which I had first in my legs/lower half and then a week or two later, my face, similar to what you described). I also thereafter was hit with a lot of GI issues which has now altered my GI state. And the muscle dysfunction as well, which has caused a rapid change in my body comp and physical abilities. I've experienced additional changes as well (skin, eyes, for example).
I'm always torn between continuing pursuing the cause of all this and understanding what's going on with me, or just accepting that I probably won't get any answers and just living with it-- likely similar to how you felt. All that said, I'm very happy for you to hear that you've seen improvement in your muscle mass; that's encouraging!
@lewy
I am in the United States.