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.

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@bmars I’m so sorry, you must be feeling anxious about not knowing why this is happening!
How is your blood circulation? Have you seen a cardiologist?

Can you move, or do you just feel numb?

Wish I could help.

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@SusanEllen66

@bmars I’m so sorry, you must be feeling anxious about not knowing why this is happening!
How is your blood circulation? Have you seen a cardiologist?

Can you move, or do you just feel numb?

Wish I could help.

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I’m more than anxious at this point as I noticed anxiety and negative thoughts really influence my day to day of being able to handle being in this state. Depressed is probably a better word as I don’t have options right now. Circulation is just fine and I did have two bad EKG readings two weeks apart, but nothing they said they’d refer me to a cardiologist for. I’ve had nurse related friends mention immunologists & rheumatologists but don’t have anywhere to get the bloodwork done for the referral. Neurologists did their tests and pretty much shrugged their shoulders and sent me on my way too.

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@SusanEllen66

@bmars I’m so sorry, you must be feeling anxious about not knowing why this is happening!
How is your blood circulation? Have you seen a cardiologist?

Can you move, or do you just feel numb?

Wish I could help.

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Also may I add I can move very slowly but it’s completely numb legs. I don’t even feel the wind from the fan, temperature, textures of things. I can’t twist, bend, lift, or sit.

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Hello, @bmars

I'm not the fellow who'll be able to give you sound advice, but as I see, yours is a new message, and as it's already 9 p.m. here in Colorado; I didn't want to post to go unanswered until morning. Come morning, however, I know you'll begin to hear from those who'll have truly helpful things to say. I myself look forward to reading the replies you receive.

What I do feel comfortable saying is Welcome to the Group! I trust you'll find your time here well spent.

Best wishes––in all sincerity,
Ray (@ray666)

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@ray666

Hello, @bmars

I'm not the fellow who'll be able to give you sound advice, but as I see, yours is a new message, and as it's already 9 p.m. here in Colorado; I didn't want to post to go unanswered until morning. Come morning, however, I know you'll begin to hear from those who'll have truly helpful things to say. I myself look forward to reading the replies you receive.

What I do feel comfortable saying is Welcome to the Group! I trust you'll find your time here well spent.

Best wishes––in all sincerity,
Ray (@ray666)

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Thank you! I was directed here by people very trusting of this service/mayo clinic themselves so I hope so as well. Thank you for making me feel welcome!

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Hello!Did you happen to get covid?I have lost sensation in the trunk of my body.I have a bunch of other weird symptoms,but no Doctor can figure it out.All my tests come back normal.I think it is part of long covid.I am on a site for long covid and there is other people with it.I am pretty much bedridden.If I walk it feels like my body is not there because all of the sensation is gone.I think because covid attacks the brain it messes up the signals between the brain and the body.A girl that was pretty much crippled from covid started taking cymbalta which is normally used for Fibromyalgia and chronic fatigue and she can walk fine now.It took a month for her to go back to normal.I am thinking about trying it.

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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 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 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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@j77

Hello!Did you happen to get covid?I have lost sensation in the trunk of my body.I have a bunch of other weird symptoms,but no Doctor can figure it out.All my tests come back normal.I think it is part of long covid.I am on a site for long covid and there is other people with it.I am pretty much bedridden.If I walk it feels like my body is not there because all of the sensation is gone.I think because covid attacks the brain it messes up the signals between the brain and the body.A girl that was pretty much crippled from covid started taking cymbalta which is normally used for Fibromyalgia and chronic fatigue and she can walk fine now.It took a month for her to go back to normal.I am thinking about trying it.

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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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