1. < Neuropathy

New to The Group! Needing Advice for this undiagnosable situation

Posted by bmars @bmars, Jun 18 9:50pm

Bloodwork comes back clean. Neurologists found nothing after testing and cannot help me. One day I woke up numb to the touch from the waist down, and over a span of weeks i felt nerve pain/death everywhere until I am now numb from head to toe. No prior injuries, no prior abuse of anything or any sort. In need of a new medical team and etc but don’t know which way to go about this. I’m becoming completely bedridden. Mri’s clear as well. I’m 22yo if that helps.

Interested in more discussions like this? Go to the Neuropathy Support Group.

bmars | @bmars | Jun 19 12:21pm
In reply to @johnbishop "Hello @bmars, I would like to add my welcome to Connect along with @j77, @ray666, @SusanEllen66..." + (show)
@johnbishop

Hello @bmars, I would like to add my welcome to Connect along with @j77, @ray666, @SusanEllen66 and others. I am sorry to hear that you are struggling with a diagnosis and being so young at 22 years old. It sounds like you have seen different neurologists with no diagnosis or cause for the sudden numbness that worked it's way from head to toe over a span of a few weeks. There can be many causes of numbness. Mayo Clinic has some information on the causes here - https://www.mayoclinic.org/symptoms/numbness/basics/causes/sym-20050938.

Have you thought about seeking help at a teaching hospital or major health facility that use a multidisciplinary teamwork approach to diagnose and treat patients?

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I’m unsure of how to find those kinds of institutions, I know I don’t have much around me to help as the hospitals and neurologists around me found nothing so they can’t help.

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bmars | @bmars | Jun 19 12:23pm
In reply to @26sabrina "I would definitely go to a neurology center for second opinion. I just did this and..." + (show)
@26sabrina

I would definitely go to a neurology center for second opinion. I just did this and am getting more investigation and possible diagnosis.

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I think we only have practicing neurologists here, not a center, unless the place that said they can’t help after many tests has been the center. I’m unsure of how to find resources.

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cb3 | @cb3 | Jun 19 12:27pm

@bmars. My heart goes out to you. And welcome to this wonderful group. My first thought was, have you tried acupuncture? I take R-Alpha Lipoic Acid (R-ALA) (stabilized) 600 mg every morning. I've been on it 30 days and I can now walk through the stores without horrible joint aches in my hips, and neuropathy pain in other parts of my body, especially feet. To me R-ALA is a miracle. My nutritionist recommended it and I'm so happy she did. I also use 5% Lidocaine transdermal patches on my back. And to get rid of inflammation in my entire body, I have gone non-dairy and plant-based in my diet. I am not Vegan or any of the other tags that are used for people on special diets. I just simply want to get rid of pain. And according to my recent lab work, everything I am doing so far is working (slowly, but it's working). Hang in there. This is a great forum and people will help you. Best to you, CB

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j77 | @j77 | Jun 19 1:32pm
In reply to @bmars "I had covid 3 years ago, I can look into that but again sadly my MRI’s..." + (show)
@bmars

I had covid 3 years ago, I can look into that but again sadly my MRI’s came back clear and this is full body head to toe numbness for 3 months now, no medications or vitamins have helped.

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So Frustrating.I would definitely look into covid again though.You would be amazed at what it brings on.Everyones MRI's,xrays,bloodwork comes back normal too.I have been going from specialist to specialist with no answers.

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dreams999 | @dreams999 | Jun 19 1:47pm
In reply to @dreams999 "I am in a rush have bad lumbar issues. Feet would be numb. I was.told by..." + (show)
@dreams999

I am in a rush have bad lumbar issues. Feet would be numb. I was.told by chirp to take sub lingual b12, alpha lipoid acid, and by pure ultra.comfort which improves musk panels two comfort and function. Its working!

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I am on a scrap tablet. I see the vitamins were stated wrong. I will repost later. Did anyone get any relief stopping smoking?

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Mentor
John, Volunteer Mentor | @johnbishop | Jun 19 1:49pm
In reply to @bmars "I’m unsure of how to find those kinds of institutions, I know I don’t have much..." + (show)
@bmars

I’m unsure of how to find those kinds of institutions, I know I don’t have much around me to help as the hospitals and neurologists around me found nothing so they can’t help.

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@bmars Where are you located if you don’t mind me asking?

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bmars | @bmars | Jun 19 1:52pm
In reply to @johnbishop "@bmars Where are you located if you don’t mind me asking?" + (show)
@johnbishop

@bmars Where are you located if you don’t mind me asking?

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I’m in VA, Chs/Norfolk/Vb area to be exact

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bmars | @bmars | Jun 19 1:52pm
In reply to @dreams999 "I am on a scrap tablet. I see the vitamins were stated wrong. I will repost..." + (show)
@dreams999

I am on a scrap tablet. I see the vitamins were stated wrong. I will repost later. Did anyone get any relief stopping smoking?

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I stopped all forms of smoking, caffeine, and my BC the day i woke up numb so no no relief

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jun 19 2:11pm
In reply to @bmars "I’m in VA, Chs/Norfolk/Vb area to be exact" + (show)
@bmars

I’m in VA, Chs/Norfolk/Vb area to be exact

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Here's a page that shows the teaching hospitals located in Virginia - https://www.healthguideusa.org/teaching_hospitals_virginia.htm.

Also, VHC Health is part of the Mayo Clinic Care Network if that is an option - https://www.vhchealth.org/about-us/collaboration-with-mayo-clinic/.

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dreams999 | @dreams999 | Jun 19 2:43pm

My diagnosis is multi facet hypertrophy in grade 1 anterior spondylothesis @L4/5 slight retrolethisis L1/2. Foraminal narrow L4/5 greatest @ L 1/2. Thecal sac narrow greatest L4/5 where is subarticular region narrowing bilaterally, where the traversing L5 nerve roots located. Findings have worsened at L1/2

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