Saddle paresthesia: Where did my normal feeling body go?

Posted by noanswers @noanswers, Sep 29 5:40pm

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

Welcome to MayoClinuc Connect @noanswers Your situation certainly sounds strange and serious. No one on MCC is a medical professional so we cant diagnose what’s going on. I would suggest that since you don’t have answers yet, that you find a university teaching hospital or a large medical center. You might also check for hospitals that have partnered with Mayo Clinic by googling Mayo Clinic Care Network. You can also try ‘medical centers of excellence’. Your neurologist should be able to help you get appointments.
https://www.spine-health.com/conditions/lower-back-pain/cauda-equina-syndrome-symptoms
Are you still able to care for yourself and go to work?

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Thank you for your quick response-Yes I can care for myself. The symptoms are nonstop and make life difficult. I see a neurologist at Yale University teaching hospital in Ct. Still I get no answers😢I will try some of your suggestions. I find it hard to find anyone presenting with my symptoms without an answer.

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@noanswers

Thank you for your quick response-Yes I can care for myself. The symptoms are nonstop and make life difficult. I see a neurologist at Yale University teaching hospital in Ct. Still I get no answers😢I will try some of your suggestions. I find it hard to find anyone presenting with my symptoms without an answer.

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Hi NoAnswers, it sounds like your doctors are working hard to get to the bottom of this and aren't giving up on you, but rather working with and for you. That's good.

Should you wish to consider a second opinion at Mayo Clinic, here is more information about requesting an appointment http://mayocl.in/1mtmR63

What are the next steps with your neurologist?

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@noanswers I think you may find these related discussions helpful:
– Cauda Equina Syndrome: Pain, symptoms, management & prognosis: https://connect.mayoclinic.org/discussion/cauda-equina/
– Cauda equina syndrome (CES): https://connect.mayoclinic.org/discussion/my-story-in-short/

I've also moved your question to the Spine Health group here: https://connect.mayoclinic.org/group/spine-health/ as I believe your situation is a neurological issue rather than autoimmune.

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@colleenyoung

@noanswers I think you may find these related discussions helpful:
– Cauda Equina Syndrome: Pain, symptoms, management & prognosis: https://connect.mayoclinic.org/discussion/cauda-equina/
– Cauda equina syndrome (CES): https://connect.mayoclinic.org/discussion/my-story-in-short/

I've also moved your question to the Spine Health group here: https://connect.mayoclinic.org/group/spine-health/ as I believe your situation is a neurological issue rather than autoimmune.

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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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@colleenyoung

Hi NoAnswers, it sounds like your doctors are working hard to get to the bottom of this and aren't giving up on you, but rather working with and for you. That's good.

Should you wish to consider a second opinion at Mayo Clinic, here is more information about requesting an appointment http://mayocl.in/1mtmR63

What are the next steps with your neurologist?

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I do have fine doctors but no answer after 9 months and I keep getting new developments. Next blood test is a Sensory Motor Neuropathy Panel ordered by my neurologist. My GP ordered blood work to see if lack of magnesium was causing fasciculations-test came back negative with slightly elevated liver function tests? Thank you again for your help . Wish I lived near a Mayo Clinic.

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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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@noanswers Have you tried seeing a physical therapist for an evaluation? I know from my own experience that weird sensations can start when something is out of alignment with the spine or pelvis. Recently for me, I was having some tingling and buzzing in my groin area on one side and I had bladder urgency and it wouldn't spontaneously empty completely. I didn't know that my sacrum was out of alignment, and I am regularly seen by a PT. Normaly, my left hip bone gets pulled forward because of facial tightness and this is something I keep working on. I also have a "sacro wedgie" which is a rubber device triangular shaped that matches the shape of the sacrum and you lay on it. When I did that, I felt more pressure on the left side, and then it realigned my sacrum (when both sides felt equal again) and all those symptoms stopped . Things like this are easy to miss, but they make a big difference. It is a subtle shift of position that wouldn't look like anything on an MRI. The key is to find a really good expert physical therapist preferably who uses myofascial release. Here is our discussion on MFR therapy.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
Does this type of therapy look interesting to you and something you may want to try?

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Thank you so much-an avenue that has not been presented by my Doctors. I am so glad I joined this group. I was hesitant because another group on Facebook was all gloom and doom and although I was sympathetic to all it was just so depressing and not very helpful. I feel like this site and people like you are bringing me a wealth of information. I also wonder if this could be something autoimmune with my very low IGM?
Thank you so much ❤️

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Hope you continue to feel better.

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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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