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Undiagnosed, numbness, tingling, Muscle weakness - MS ruled out. Next?
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!
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1 Reaction@lewy
I am in the United States.
I have alot of the same symptoms & weight loss. Can't get concrete answers, its very frustrating.
My life has been impacted severely. I was a very active person and now I can barely do anything.
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2 ReactionsI’ve had similar problems for many years, especially the neurological ones. Went to many doctors, finally saw a rheumatologist who took one look at all my symptoms and diagnosed Sjogren’s Disease.
Hard to diagnose, but I’d suggest you find a good rheumatologist.
You mentioned eye, GI problems and neuropathy, all of my early symptoms,
Good luck - took me several years to find the doctor who put things together, but it was worth pursuing.
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2 Reactions@marina88
Hello. It's interesting that you mentioned seeing a rheumatologist. I am currently seeing one. Bloodwork was done and everything is coming back normal. A lot of my symptoms have lessened unless I've gotten used to it. The main issue I been experiencing for the past three months is my right hand is in constant pain and swollen. Especially in the morning when I wake up my right hand is almost numb, tingling and burning sensation and swollen. Throughout the day the majority of my symptoms aren't so noticeable except the soreness feeling. The rheumatologist wants to see me back in six months. Honestly I'm at a loss. I've seen so many doctors and have gone for so many test and have gotten blood drawn numerous times and everything is normal.
Understand how you feel. I went through 4 rheumatologists before finding one who understands Sjogrens. I’m not saying that’s what you have, but much of your concerns sound familiar.
My blood work had been coming back normal but finally found out I’m sero negative, so most things don’t show up.
Hang in there until you find the right doctor for you.
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1 ReactionI am so sorry you are experiencing such symptoms and without clear answers. Have you been tested for gluten sensitivity and Celiac?
I experienced neurological issues without GI issues for twelve years before I was diagnosed with Celiac (including episodes of paralysis and neuropathy). By the time I was diagnosed, I had started up with issues with heart racing/palpitations, severe muscle pain/stiffness and exercise intolerance and ended up having to use a wheelchair anytime I was out of the house for a period of two years. It had been hoped that going gluten free would help alleviate these most recent symptoms but they only worsened. My arms began to be affected, and my gait was reminiscent of a person who had Parkinson's Disease.
Through much research and the grace of God I stumbled upon an article written by Dr. Vikki Peterson, who specializes in Celiac, and wrote that people who suffer from a neurological manifestation of Celiac Disease may also have an issue with dietary glutamate. Glutamate is an abundant amino acid in the body and also the most abundant neurotransmitter in the brain. People who have any neurological disease tend to have excessive amounts of glutamate in the brain which causes excitotoxicity. Glutamate is also present in all food but in varying amounts. I started eliminating the amount of high glutamate foods I was consuming (like yogurt, fermented veggies, bone broth, as well as focusing on a lower but adequate protein diet, as it is found in abundance especially in high protein foods, and I eliminated leftover foods-- I had already eliminated processed foods and heavily spiced foods which are also very high in glutamate).
Within two weeks of eliminating these foods I not only was able to walk but I ran!! I have been eating in this same way (which is challenging, admittedly) but I can run and keep up with my young kids and I have my life back. I am a 43 year old homeschool mama for reference.
To be tested for Celiac and gluten sensitivity you need to be on a diet that includes gluten for three months (equivalent of a slice of bread per day). Here is the serology to ask for. Many doctors only run the tTG but without the entire panel many will go undiagnosed.
Celiac Serology:
1. IgA antibody
2. Antigliadin Antibody IgG
3. Antigliadin Antibody IgA
4. Tissue Transglutaminase Antibody
5. Immunoglobulin A level
I hope you find relief from your symptoms and find answers soon!