Both ulnar side of hand problems

Posted by kristinemcauthon @kristinemcauthon, Feb 24 9:20am

I have something going on I’m not sure what. So about a year ago I had lots of pain on the side of my hand the ulnar side and weakness. Every time I would use it would hurt and cramp. I then noticed atrophy in the hypothenar and in the area between the knuckles of the pinky and the ring finger, also some clawing of the pinky. I went to the doctor he confirmed there was indeed atrophy and sent me to have an emg. The nerve test found carpel tunnel and they couldn’t confirm cubital tunnel because I was one point off. The muscle part was all good. So I went to a surgeon and he said the emg isn’t always right and since I was so close to failing the ulnar nerve test that he would go ahead and do the surgery for both cubital and carpel tunnel. It’s been 9 months since the surgery and on the occasion I still have issues with that hand it’s not all the time but I know when I irritate it because my symptoms will come back and it looks las if the clawing is worse. I am noticing some atrophy on the other hand as well and some weakness and it’s in the exact same area as the other hand. I am freaked completely out. I also noticed about 2 years ago that I had a some weird looking stuff going on with my foot it looks like atrophy in the arch part and I lean on my foot but it hasn’t changed in 2 years it’s still the same as far as I know. I went to a neurologist because it bothered me she said she didn’t see much wrong on the rest of my exam just some brisk reflexes on both knees and a positive Hoffman’s reflex on both hands which said if of both sides not a problem. That was pretty much it. She did send me for another emg on the leg and foot and also the the arm on that side. On the leg they found both nerves were about 10% slower and the arm they found carpel tunnel and that was about it and nothing on the muscle part. At the time I wasn’t concerned about my hand on the other side but a few months ago I have noticed the same thing happening and that was after the emg. I have no clue what is going on I am scared I am only 34 years old. I have had some other weird symptoms before this came about 2 years ago so I’m not sure if it’s all connected. But it first started with pain in my bladder and frequency but nothing hardly came out and was diagnosed with IC. I then went on to have a feeling of like I had something stuck in my throat and a swollen tongue, metal taste in my mouth and an over abundance of saliva. They said it was reflux. Then the next symptom I had was I noticed that when I would be talking to someone and would be thinking of a word but say a completely different word. Also have had itching and tingling sensations all over body. I have had lots of blood test they said my thyroid test was fine but I do have some small nodules. I had vitamin D that was on the lower side. I do have anemia and my absolute neutrophils count is2.0 which should be above 2.5 all of the red blood cell counts are low but have gotten better on iron. I believe that is all that has happened in the last two years but it was one symptom after another one would hit then another. I can’t get any answers and I need help. If anyone has had anything similar please please message me in here. Thank you and god bless.

@kristinemcauthon Hi Kristine. Kudos to you for being on top of things with your medical issues and understanding what is what. Some of your symptoms are red flags for an issue like spinal cord compression or a nerve compression that is most often missed that is caused by Thoracic Outlet Syndrome and you can have both of those together. I know because I have experienced all of that and had surgery to decompress my spinal cord. I go to physical therapy for TOS. Has your neurologist mentioned either of these? If not, you may want to seek another opinion elsewhere with a neurologist linked to a spine center.
The accuracy of an EMG is very much due to the skill of the doctor because if the needle is not in the correct place and close to the nerve they are trying to measure, they don't get an accurate reading. When you do get a reading that indicates slow nerve transmission, there has to be a reason for it.

When you have nerve compressions, they can be anywhere along the pathway of the nerve from the spinal cord to your arm or hand and will produce the same symptoms. I had TOS that was missed. My spinal cord compression from a ruptured disc was not missed, but what was missed was that the surgeons incorrectly assumed my symptoms must have been caused by some other inflammatory disease and 5 refused to help me. They missed what is called funicular pain that caused crazy pains all over the body because of spinal cord compression in my neck. The symptoms of slower nerve impulses, bladder frequency and difficulty emptying, atrophy in limbs, uneven gait when walking, balance issues, tingling, and choking sensations due to neck muscle spasms can all be part of spinal cord or nerve root problems. TOS causes compression of the Brachial plexus between the rib cage and collar bone which includes the Ulnar nerve as well as compressing blood vessels that supply the arm and hand. If you have had an injury like a whiplash, you could have undiagnosed spine problems or Thoracic Outlet Syndrome. These would be questions to ask if you are seen by a specialist who understands these issues. My spine surgery was at Mayo where my C5 and C6 were fused and I had a great recovery. Have you had a trauma or accident that may have injured your neck or back? TOS is a positional problem which bad slouching posture will aggravate and it also can be related to repetitive stress injuries. Does any of this ring a bell for you?

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The only thing I can think of is when I went rafting I was steering it and hit a rock with my paddle and I flew back on my back. I was in a few car accidents but nothing serious a few years back. I was diagnosed with scoliosis when I was a child but never did anything about it. I am freaked out about als. But the neurologist I saw said no not als and it was at a neuromuscular doctor. She said als doesn’t present on the ulnar side like that. I did notice that when I sit one leg is a little higher than the other. The other thing I just thought of is when I was giving birth to my daughter who is now 5 she had a hard time coming out and her shoulder got stuck and they had to lift me up upside down to get her out she never dropped. I always wondered if that caused any issues. Thank you for your help!I really do appreciate it. God bless you

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Hello @kristinemcauthon and welcome to Mayo Clinic Connect. I can tell from your posts that you have been very concerned as well as proactive in seeking answers for your hand issues and the symptoms you've been experiencing. I see that you and @jenniferhunter have already connected and she has shared some very important information for you to consider.

Members like @birdman518 and @fourof5zs have shared about their ulnar nerve experiences and may be able to offer you some additional support.

Where are you at in terms of working with a neurologist now?

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I have been talking with the nurse at my neurologist office and they recommended a visit and an emg. The last time I went to see her she wanted to the emg but it was going to be very expensive to do it there at the hospital so I went to another place. She said they have a particular technique they do and she will understand better on what’s going on. The technician that did my last emg thought he saw something going on with my ulnar nerve on the nerve test but did the calculations and changed his mind so makes me think it’s very early and it picked it up slightly. Thank you very much for your help.

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hey kristine – feel so badly for you – so young and with a young child – looks like you've tried so hard to get the right help – I have many of the same symptoms and it has gotten worse and worse – problems started in my early 40s and am now 80! So you can live thru it and you will but it is no way to have to live. Am in unbearable pain and typing now hurts. I've had ulnar nerve release, both wrists carpal tunnel surgeries and 3 cervical spine surgeries. Your post encourages me to try a neurologist again. Wish i had answers for you – only thing i would caution is to watch out for those Spine fix places that advertise and promise too good to be true results – be good to yourself and keep us posted. If i learn anything helpful i will let you now.

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@kristinemcauthon

The only thing I can think of is when I went rafting I was steering it and hit a rock with my paddle and I flew back on my back. I was in a few car accidents but nothing serious a few years back. I was diagnosed with scoliosis when I was a child but never did anything about it. I am freaked out about als. But the neurologist I saw said no not als and it was at a neuromuscular doctor. She said als doesn’t present on the ulnar side like that. I did notice that when I sit one leg is a little higher than the other. The other thing I just thought of is when I was giving birth to my daughter who is now 5 she had a hard time coming out and her shoulder got stuck and they had to lift me up upside down to get her out she never dropped. I always wondered if that caused any issues. Thank you for your help!I really do appreciate it. God bless you

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@kristinemcauthon Kristine, you may want to try physical therapy. With one leg higher when you sit, that suggests that your pelvis may be out of alignment. that is a common problem for women and also affects me even though I haven't had any children. There are some simple exercises I do to level my pelvis. If a leg seems too long or too short, it can also be the pelvis. That puts stress on the spine when the pelvis is off. I realize that with scoliosis, it may be different for you as far as body alignment. If you have some issues causing nerve compression due to tight muscles, etc, having pressure added from scoliosis can make it worse by pushing on the tissues and organs. You may want to look at our discussion on myofascial release, and there is a provider search on the MFR website. This is a specialized type of physical therapy. The car accidents could have affected your spine even if they seemed not to be serious at the time, and compression on the spinal cord can sneak up on you without many symptoms. You might discuss this with your neurologist or look for a specialist for a spine consult and discuss the previous traffic accidents. A disc can be injured with small cracks, that later open up weakening the outer layer of the disc and then it bulges and later herniates. That can take years to happen and for me it was 20 years after a whiplash that I was having spine surgery to free my spinal cord from compression. Here is the link.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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