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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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Hi, @jair19. I wanted to check back and see how things are going with you? You'll note @cadrekidd0 wanted to know this, as well. How are the numbness; tingling; muscle weakness; bladder, bowel and balance issues; light headedness and other medical challenges you talked about previously?
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1 Reaction@lisalucier and @carekidd0 Sorry- I posted this so many years ago and haven’t really been on here much. The short answer is that I have no answers. I got tired of looking, honestly, and I no longer expect to find answers. Some symptoms are better or more manageable now, due to trial and error. I had a clot and blood thinners helped with some of the digestive problems but nobody knows why. I also found out I had scar tissue wrapped around parts of my intestines, and removing that has helped with different digestive symptoms . The numbness and tingling just comes and goes in varying intensity but I’m just sort of used to it. I had 2 bladder surgeries, then an implant device that has been a life changer for my bladder. So, basically, no diagnosis but little things here and there that helped with some of my symptoms. I just have a new normal, but I’m doing ok.
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5 ReactionsI'm really sorry to hear you have no answers, @jair19. I'm glad that you returned to give us an update, however. I'm happy to hear that with trial and error, you have some improvement in some of your symptoms.
The surgery on the scar tissue around your intestines sounds complex. That is good news that it's helped different digestive symptoms.
What type of bladder implant did you have?
The implant is called interstim- it is a little device placed in the hip that sends messages to your spine and for some reason, it helps with bladder control. I was having to pee sometimes every 15 minutes, and I had to always know where a bathroom was. With the implant, I don’t have that constant urgency. It’s very nice.
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1 ReactionReally glad that implant is working for you, @jair19. If you have any interest in participating in discussions about the neurostimulation system used to treat overactive bladder (InterStim), there are a few on Mayo Clinic Connect. It looks like other members have used it for urinary retention, as well.
- Interstim for urinary retention https://connect.mayoclinic.org/discussion/interstim-for-urinary-retention/
- InterSTIM https://connect.mayoclinic.org/discussion/interstim/
Then this member talks about overactive bladder, mentioning they had a neurostimulation system used to treat overactive bladder (InterStim) which is no longer working. Sounds like their doctor then tried neurotoxin botulinum toxin type A (Botox) injections:
- Botox for Overactive Bladder https://connect.mayoclinic.org/discussion/botox-for-overactive-bladder/
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1 ReactionHi , what did you end up finding out ?
Hi, @crgrace, and welcome to Mayo Clinic Connect. Wondering about two things: 1) Are you asking about what the original poster, @jair19, found out? 2) Have you experienced symptoms like numbness, tingling or muscle weakness?
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1 Reaction@jair19 (edited) I've read your posts here and in the vascular thread. I'm experiencing (or have experienced) many if not most of the symptoms you described, and on a similar timeline. Countless blood tests, MRI, EMG/NCS-- all normal. Many "we just don't know" answers from the doctors. I see your most recent update--thank you for that. Did any of your muscle functioning improve? Or did it stay the same/worsen?
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I was reading through your post. Your symptoms sound just like mine. I'm not getting any answers either, it's so frustrating. My vascular doctor states it's long term effects of covid and he also states I have peripheral artery disease. Nothing seems to help and I almost feel like it's getting worse. I'm 48. This all started when I turned 47. It's been a year of torture. I used to be very active, exercise 5 times a week. Now I can't exercise at all without my right foot going numb. The burning, tingling and numbness seems to be taking a toll on me mentally. It's throughout my arms, legs, hands, feet and sometimes the front of my neck and throat. I try not to think about it, but it's pretty hard not to since the feeling is constant. I'm going for follow ups this month and next. I really love working out and being active. I'm praying I get some answers, but I'm losing hope.
@redmoose I didn’t focus a whole lot on the muscle weakness when so many things were going wrong. About a year ago I started learning more about perimenopause and menopause. (I’m 52) and many, but not all, of my symptoms could actually be attributed to that, including the muscle weakness (sarcopenia). I was also diagnosed with osteoporosis, so with that, I have been trying to eat more protein and go to the gym for strength training. My muscles are getting stronger, and an in-body scan shows that it is better now than it was when I scanned 4 years ago, so I’ll take it. But, I don’t know if you are even female, and there can be so many causes behind muscle weakness, so this is just my experience. I wouldn’t say that it got worse- it just kind of stayed the same after the initial muscle loss (until I did more strength training and protein intake. )