Saddle paresthesia: Where did my normal feeling body go?

Posted by noanswers @noanswers, Sep 29, 2021

Last December 2020 I suddenly came down with saddle parathesia along with my usual bout of myofascial pain syndrome. This progressed to numbness ,stinging ,tingling in legs and feet. My upper body started with tingling and pain. Now I have fasciculations and many cramps in feet and legs. Also a fizzing in my head and body which sometimes makes me feel cold. I don’t recognize my own body.It is like everything is miss firing or all the wires are frayed. I keep my strength and reflexes are good. I have had 3 MRI with and without contrast. Many blood tests and a 24 hour urin study. Finally a skin punch biopsy. All normal Only my IGM is 35 very low but this has been my entire life.My neurologist ( muscular) has no idea what this is only what it isn’t. My primary care doctor says chronic pain syndrome but my symptoms are all neurological?? I even get fasciculations in my stomach. I am currently on 900 mg of gabapentin and 30 mg of Nortripline. This helps with some pain but none of the neuro symptoms. I am scared because this is always progressing and I get no answers. Thank you

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@noanswers Are you taking magnesium anyway? I've heard a blood test for it isn't that great because most of the magnesium is inside cells and bones. I had constant muscle twitching before I got on it.

It wouldn't hurt to try collagen protein for MPS. Except for muscles, the entire body is made of collagen including the fascia. It also has a pain relieving effect I've yet to look up. Some should be taken before bed because a lot of repairs are done during sleep. Another thing is green tea, it has several muscle relaxants.

I'm guessing any tests for inflammation came back normal? And yeah, your very low IGM could be related somehow.

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Thank you so much -I appreciate the information. It is well worth having. My tests for inflammation were normal. My new thing is pain under the clavicle . It stabs me when I use my arm a certain way. It is different then the nerve type pain. It keeps happening more and more. I can feel it in my neck too.So here I go again. You really are so very kind. Thank you ❤️I hope you are feeling better🙏🏻

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@noanswers

Thank you so much -I appreciate the information. It is well worth having. My tests for inflammation were normal. My new thing is pain under the clavicle . It stabs me when I use my arm a certain way. It is different then the nerve type pain. It keeps happening more and more. I can feel it in my neck too.So here I go again. You really are so very kind. Thank you ❤️I hope you are feeling better🙏🏻

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@noanswers Have you heard of thoracic outlet syndrome? It is a compression of nerves and blood vessels between the neck and chest, and it has some tight spots under the clavicle. I work on this myself in physical therapy. Most doctors miss this because they don't understand it, and physical therapy can help a lot. Here are some links for information. I do myofascial release for this and it helps. Raising the arms over head or moving the shoulder forward usually aggravates TOS. Usually a neurologist can diagnose TOS. Here is the link again about MFR therapy.

https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988
https://mskneurology.com/how-truly-treat-thoracic-outlet-syndrome/

Do you think TOS could be an issue for you?

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@noanswers

First I want to express how incredibly grateful I am for your response-however I have had 3MRI’s and had the scans read by a very skilled back surgeon.He assured this is not back related. I was so sure it was but 3 doctors Neuro-GP and spine specialist said -no? I feel so lost like I’m adrift on this tiny island calling I’m over here does anyone identify with these symptoms and no diagnosis?I do so appreciate your time and attention to my post❤️

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I have been experiencing saddle paresthesia now for two weeks with no explanation. I have had CT scan and MRI on spinal cord and neck with no findings as well as MRIs on brain to check for stroke with no findings. I'm not in pain, just great discomfort and experiencing numbness in my buttocks and both feet, as well as some loss of feeling down both legs.

I have made three trips to ER and now not sure whether to return as there has been no change in over a week. Greatly distressing. Hope you have had some relief and discovery of what is at isssue.

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Have they examined the axial view of the MRI for Arachnoiditis?

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