Neuropathy arms legs 27 yrs old progressing brain confusion

Posted by 10987654321 @10987654321, Aug 14 12:11pm

Neuropathy limbs and hands and feet stopped sweating so burning up chest feels like cement poured on it and feel like I can’t breathe wake up every hour feeling like I’m gasping for air

Dry eyes/ (eyebrows move when blink now each blink hurts/ dry mouth)

Having a hard time walking getting more dizzy literally struggling to even lie in bed or do anything

Confusion severely getting worse brain mri said no damage but something is not right I had to quit job

I’m only 27 please help me

Hello @10987654321, I'm sorry you haven't been able to find much information that helps you. You mention a lot of symptoms starting after your deviated septum surgery but from what I've read about that type of surgery, the symptoms don't seem to be related to risks for that type of surgery. Here are a couple of other discussions you may want to read through that sound similar to some of your symptoms.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) treatments: https://connect.mayoclinic.org/discussion/myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs-treatments/

Constant Fatigue, 20 year old female: https://connect.mayoclinic.org/discussion/constant-fatigue-20-year-old-female/

Have you considered seeking a second opinion from a major teaching hospital or the Mayo Clinic? If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

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Hi @10987654321 I am extremely sorry to hear you are in such a desperate state. Have you been tested for covid as @jenniferhunter suggested? This seems like a must-do for starters. You mention an MRI; what feedback have you had from any doctors or other health practitioners who have seen you? You have described a set of truly awful symptoms but can you flesh out more detail as to what action(s) you or anyone else has taken so far? Since, as you have stated, this all began after a blood draw, one guess could be covid19 or some other type of infection. In any case my heart goes out to you. Please keep posting your experiences. Best, Hank

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@jesfactsmon

Hi @10987654321 I am extremely sorry to hear you are in such a desperate state. Have you been tested for covid as @jenniferhunter suggested? This seems like a must-do for starters. You mention an MRI; what feedback have you had from any doctors or other health practitioners who have seen you? You have described a set of truly awful symptoms but can you flesh out more detail as to what action(s) you or anyone else has taken so far? Since, as you have stated, this all began after a blood draw, one guess could be covid19 or some other type of infection. In any case my heart goes out to you. Please keep posting your experiences. Best, Hank

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I’ve had mris blood tests csf b12 shots

I’m still getting way worse can I be expedited to Mayo Clinic???

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Can I be expedited to Mayo Clinic???

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@10987654321

Can I be expedited to Mayo Clinic???

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@10987654321 To request an appointment you can self-refer or have your provider make a referral. Here is the contact information: http://mayocl.in/1mtmR63

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I was given b12 shots they are not seeming to work numbness is getting worse as is weakness

Should I consider ivig or something else too???? It’s getting hard to walk my whole body is weak and numb…

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@10987654321

I was given b12 shots they are not seeming to work numbness is getting worse as is weakness

Should I consider ivig or something else too???? It’s getting hard to walk my whole body is weak and numb…

Jump to this post

@10987654321, several members in the neuropathy group talk about B12 and IVIG treatments. @retiredteacher asked a similar question and vitamin B12 in this discussion:
– Does Vitamin B-12 help with neuropathy of the feet? https://connect.mayoclinic.org/discussion/does-vitamin-b-12-help-with-neuropathy-of-the-feet/

Your neurologist should be able to advise whether vitamin B12 and IVIG treatment are right for you or not. Have either been offered as a treatment option?

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Hey @10987654321. I'm reading your posts yet do not understand if you are working with a Neurologist and have been diagnosed yet with any condition or disease? Are you still under a workup? There is blood testing, skin punch biopsy, genetic testing, lumbar puncture, EMG/Nerve Conduction Study in addition to an MRI.

I have a lot of what you describe and want to help but I'd like more information in order to do so. I was B12 deficient and am now a lucky recipient of Small Fiber Peripheral Polyneuropathy since age 46. How can I help?

Rachel

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@10987654321

I was given b12 shots they are not seeming to work numbness is getting worse as is weakness

Should I consider ivig or something else too???? It’s getting hard to walk my whole body is weak and numb…

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@10987654321 Hi, My goodness. Your symptoms are all over the place. Have you had any diagnosis? Are you on any meds at all to alleviate symptoms? Maybe at least start with a good CBD oil to calm you down, and calm some of your symptoms. Do you even have a neurologist? My best to you, Lori Renee

Liked by rwinney

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@10987654321

I was given b12 shots they are not seeming to work numbness is getting worse as is weakness

Should I consider ivig or something else too???? It’s getting hard to walk my whole body is weak and numb…

Jump to this post

@10987654321 What tests have you had that gave the neuropathy diagnosis? There are lots of kinds of neuropathy, with a range of treatments. Some of your symptoms indicate autonomic neuropathy, which is a challenge to deal with. I'm in the beginning stages of autonomic neuropathy, and have severe pain and other issues from small fiber peripheral neuropathy.

Give Mayo a call if you can get to one of their clinics. A good teaching hospital can also be a good resource.

Jim

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