Body-wide pressure induced numbness despite normal MRI/EMG/Biopsy

Posted by zzdd33 @zzdd33, 3 days ago

For the last six months, mild pressure on my arms/legs/hands/feet has been causing them to go numb. That numbness then goes away when pressure is removed. The threshold of pressure that causes numbness has been steadily decreasing.

I have already cut out many activities which trigger my symptoms (such as weightlifting and stretching), but it has gotten to the point where everyday tasks like sitting, typing, holding my phone, driving, playing piano, etc. all cause either numbness or altered sensation.

In addition to the pressure-triggered numbness, I sometimes get burning, tingling, or other abnormal sensations (mostly in my hands and feet). I have also noticed heightened heat/cold sensitivity.

So far I’ve had the following tests done, all of which came back normal.
- MRI of thoracic spine, cervical spine, and brain
- EMG/NCS of both arms and one leg
- Skin biopsy (foot, ankle, wrist)
- Nerve ultrasound
- Blood testing (CBC, CMP, Hepatic function panel, Lipid panel, Vitamin D, Iron, Ferritin, Zinc, Copper, B12, TSH+T4, ANA)

Is anyone aware of a condition that could explain these symptoms despite the negative test results?

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Welcome @zzdd33, The symptoms sound a little like thoracic outlet syndrome but you mentioned your MRI and other tests came back normal. I did see some information on Mayo Clinic that mentioned that diagnosing thoracic outlet syndrome can be challenging - https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/diagnosis-treatment/drc-20353994. I'm tagging @jenniferhunter who has some experience with thoracic outlet syndrome and may have some suggestions or experience she can share with you.

You mentioned that the symptoms started about six months ago. Has your care team suggested any additional testing or referrals to other specialists?

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@zzdd33 I am a cervical spine surgery patient and also have thoracic outlet syndrome. That affects blood and nerves supplying the arms, but it would not affect the legs. Was an MRI also done for your lumbar spine? There are some similar compression syndromes that affect the pelvis. If you look at MSKneurology.com in the articles pages, you can find technical descriptions of a pelvic compression syndrome and also thoracic outlet syndrome (TOS). If you have lumbar spine issues, it may be part of the problem. As I understand your post, the MRI did not find issues in cervical and thoracic area of the spine, correct?

Can you share more specific details of where pressure is applied and then removed that reproduces your symptoms and what is your posture and body position while doing this?

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@zzdd33
Have you had your glucose and A1C levels tested? You didn’t list that.

Do you have anxiety? Are you taking any medications/supplements or diagnosed with anything else? Have you had hormones checked and heavy metals/toxicity testing? You may want to see a hematologist.

Have you had Covid and the shots? That can affect your nervous system.

Have you been tested for CRPS, fibromyalgia or peripheral vascular issues that may be behind your symptoms? Have you had any recent injuries or illnesses that happened prior to your current symptoms? Have you had your oxygen levels checked? Do you have sleep apnea and have daytime fatigue?

Did they test for vitamin toxicities and not just deficiencies? Do you smoke or drink alcohol? Toxins could be a problem.

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I am throwing this question out there because...well, just because. I experience what they are telling me is neuropathic pain and tingling from my lower back down to the tips of my toes, mostly on the back of buttocks, thighs and feet. Here's the kicker. When I settle in at night for bed, I sleep fairly well. When I wake up, most of my pain has disappeared. However, within a few minutes of arising and walking around the pain all returns. I am on a number of meds which have a minimal effect. Anyone else experience such a thing? It's really weird. Maybe I should just never get up and just live in bed. LOL.
Thanks.

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Profile picture for John, Volunteer Mentor @johnbishop

Welcome @zzdd33, The symptoms sound a little like thoracic outlet syndrome but you mentioned your MRI and other tests came back normal. I did see some information on Mayo Clinic that mentioned that diagnosing thoracic outlet syndrome can be challenging - https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/diagnosis-treatment/drc-20353994. I'm tagging @jenniferhunter who has some experience with thoracic outlet syndrome and may have some suggestions or experience she can share with you.

You mentioned that the symptoms started about six months ago. Has your care team suggested any additional testing or referrals to other specialists?

Jump to this post

@johnbishop Thank you. My neurologist has recommended I see another neurologist for a second opinion, but was not sure what further testing should be done.

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Profile picture for Jennifer, Volunteer Mentor @jenniferhunter

@zzdd33 I am a cervical spine surgery patient and also have thoracic outlet syndrome. That affects blood and nerves supplying the arms, but it would not affect the legs. Was an MRI also done for your lumbar spine? There are some similar compression syndromes that affect the pelvis. If you look at MSKneurology.com in the articles pages, you can find technical descriptions of a pelvic compression syndrome and also thoracic outlet syndrome (TOS). If you have lumbar spine issues, it may be part of the problem. As I understand your post, the MRI did not find issues in cervical and thoracic area of the spine, correct?

Can you share more specific details of where pressure is applied and then removed that reproduces your symptoms and what is your posture and body position while doing this?

Jump to this post

@jenniferhunter I have not had an MRI of the lumbar spine, since I was told that an issue with the lumbar spine would not explain the symptoms in my arms. The MRIs of my cervical and thoracic spine were normal (or so I was told). Any sustained pressure can cause my symptoms. For example, resting my head on my arm when in bed; or sitting on the toilet; or crossing my legs; or resting my elbow on a table. For the most part, it is things that would cause numbness in normal people IF the amount time spent in those positions was MUCH longer.

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Profile picture for dlydailyhope @dlydailyhope

@zzdd33
Have you had your glucose and A1C levels tested? You didn’t list that.

Do you have anxiety? Are you taking any medications/supplements or diagnosed with anything else? Have you had hormones checked and heavy metals/toxicity testing? You may want to see a hematologist.

Have you had Covid and the shots? That can affect your nervous system.

Have you been tested for CRPS, fibromyalgia or peripheral vascular issues that may be behind your symptoms? Have you had any recent injuries or illnesses that happened prior to your current symptoms? Have you had your oxygen levels checked? Do you have sleep apnea and have daytime fatigue?

Did they test for vitamin toxicities and not just deficiencies? Do you smoke or drink alcohol? Toxins could be a problem.

Jump to this post

@dlydailyhope I have not had glucose or A1C testing. I haven't had any specific testing for toxicity. All the testing I've had is mentioned in my post.
The only medication I consistently take is allegra. I do not smoke or drink. I do suffer from social anxiety and have since I was a kid.
I have had covid multiple times, but the start of my symptoms doesn't seem to line up with the timing of any particular infection.
I had a snowboard fall around the time of the start of my symptoms where I landed on my mid back. I thought the fall could be related, but so far my doctors do not seem to think so.

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Profile picture for zzdd33 @zzdd33

@jenniferhunter I have not had an MRI of the lumbar spine, since I was told that an issue with the lumbar spine would not explain the symptoms in my arms. The MRIs of my cervical and thoracic spine were normal (or so I was told). Any sustained pressure can cause my symptoms. For example, resting my head on my arm when in bed; or sitting on the toilet; or crossing my legs; or resting my elbow on a table. For the most part, it is things that would cause numbness in normal people IF the amount time spent in those positions was MUCH longer.

Jump to this post

@zzdd33 The reason I asked about a lumbar MRI was because you mentioned having symptoms in your feet. If you look up the MSK Neurology website, there is an article that describes sciatic pain that is not caused by spine issues, but by pelvic alignment.

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