1. < Neuropathy

Twitching feet, numbness and headache

Posted by Lisa @techi, Jan 28, 2018

I asked this question in autoimmune disease because l have that but I wanted to know if anyone has had twiching in their leg, numbness in arm and headache. I didn't know,who to ask. I sometimes wear my compression socks when I need them but I had a pretty good day today. I went out to eat and did a little shopping with my sister just to get out. And tonight l just woke up with this problem. I really didn't want to take my tramedol but I guess I might have too. My doctor doesn't like to give it to me but his partner does because he know about this illness. So I just wanted to know if anyone know what this is or have had it?

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Mentor
John, Volunteer Mentor | @johnbishop | Feb 4, 2018
In reply to @pdsi43one "Thank you, John, for posting websites where definitive reliable information can be foond!!! I think if..." + (show)
@pdsi43one

Thank you, John, for posting websites where definitive reliable information can be foond!!! I think if I had not taken Mayo information into my doctor I still would be undiagnosed. PA runs in my family, uncle died from it mixed with Hasimoto’s disease, which I also gave. It is sure included in my medical records now!!! I guess s regular doc can’t know everything. I gave information to my daughters and they were tested by their now informed primary physicians. Thanks for responding!

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Hi @pdsi43one, I'm glad I was able to help a little. Thank you for pointing out the B12 absorption issue when you have pernicious anemia. We are learning from each other which is a good thing.

John

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pdsi43one | @pdsi43one | Feb 4, 2018
In reply to @pdsi43one "Thank you, John, for posting websites where definitive reliable information can be foond!!! I think if..." + (show)
@pdsi43one

Thank you, John, for posting websites where definitive reliable information can be foond!!! I think if I had not taken Mayo information into my doctor I still would be undiagnosed. PA runs in my family, uncle died from it mixed with Hasimoto’s disease, which I also gave. It is sure included in my medical records now!!! I guess s regular doc can’t know everything. I gave information to my daughters and they were tested by their now informed primary physicians. Thanks for responding!

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John, the two blood tests for PA are: Intrinsic Factor Blocking Ab and Methylmalonic Acid, Serum.

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Lisa | @techi | Feb 4, 2018
In reply to @johnbishop "Lisa (@techi) here is some more information I found on the Pernicious Anaemia Society's website that..." + (show)
@johnbishop

Lisa (@techi) here is some more information I found on the Pernicious Anaemia Society's website that may explain it a little better.

What’s the Difference between Vitamin B12 Deficiency and Pernicious Anaemia?
-- https://pernicious-anaemia-society.org/b12deficiencyandperniciousanaemia/

Mayo Clinic has some information here:

You can find the information @pdsi43one mentioned about regular B12 not being absorbed by the stomach here on the Mayo Vitamin deficiency anemia page. It's under Causes - Vitamin B-12 deficiency anemia.
-- https://www.mayoclinic.org/diseases-conditions/vitamin-deficiency-anemia/symptoms-causes/syc-20355025

Test ID: ACASM -- Pernicious Anemia Cascade:
-- https://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/83632

Vitamin deficiency anemia
-- https://www.mayoclinic.org/diseases-conditions/vitamin-deficiency-anemia/diagnosis-treatment/drc-20355031

John

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@johnbishop right now I am in the hospital with my sister who is having memory issues like I had isn't that strange but they said it's not dementia it might be encephalitis like I had or other encephalitis that can't figure out. And I know that's a hepatic thing. So hopefully it's not the same.

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Mentor
John, Volunteer Mentor | @johnbishop | Feb 4, 2018
In reply to @johnbishop "Lisa (@techi) here is some more information I found on the Pernicious Anaemia Society's website that..." + (show)
@johnbishop

Lisa (@techi) here is some more information I found on the Pernicious Anaemia Society's website that may explain it a little better.

What’s the Difference between Vitamin B12 Deficiency and Pernicious Anaemia?
-- https://pernicious-anaemia-society.org/b12deficiencyandperniciousanaemia/

Mayo Clinic has some information here:

You can find the information @pdsi43one mentioned about regular B12 not being absorbed by the stomach here on the Mayo Vitamin deficiency anemia page. It's under Causes - Vitamin B-12 deficiency anemia.
-- https://www.mayoclinic.org/diseases-conditions/vitamin-deficiency-anemia/symptoms-causes/syc-20355025

Test ID: ACASM -- Pernicious Anemia Cascade:
-- https://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/83632

Vitamin deficiency anemia
-- https://www.mayoclinic.org/diseases-conditions/vitamin-deficiency-anemia/diagnosis-treatment/drc-20355031

John

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Hoping they find out what’s wrong with your sister and she is able to get on the road to recovery.

Genetics do play a part. I found out recently that my cousin who is about the same age as I am also has Polymyalgia Rheumatica (PMR) and small fiber peripheral neuropathy just like I have.

John

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Lisa | @techi | Feb 4, 2018
In reply to @johnbishop "Lisa (@techi) here is some more information I found on the Pernicious Anaemia Society's website that..." + (show)
@johnbishop

Lisa (@techi) here is some more information I found on the Pernicious Anaemia Society's website that may explain it a little better.

What’s the Difference between Vitamin B12 Deficiency and Pernicious Anaemia?
-- https://pernicious-anaemia-society.org/b12deficiencyandperniciousanaemia/

Mayo Clinic has some information here:

You can find the information @pdsi43one mentioned about regular B12 not being absorbed by the stomach here on the Mayo Vitamin deficiency anemia page. It's under Causes - Vitamin B-12 deficiency anemia.
-- https://www.mayoclinic.org/diseases-conditions/vitamin-deficiency-anemia/symptoms-causes/syc-20355025

Test ID: ACASM -- Pernicious Anemia Cascade:
-- https://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/83632

Vitamin deficiency anemia
-- https://www.mayoclinic.org/diseases-conditions/vitamin-deficiency-anemia/diagnosis-treatment/drc-20355031

John

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@johnbishop thank you John I am sending a message to the neurologist at the Mayo Clinic that behavioral therapy isn't where I need to go and I don't have conversion disorder and also when she said I been a neurologist for along time and she knows about neurology and what my neurologist said is true and I have to deal with it if all the test comes back normal she needs to read the Mayo Clinic autoimmune encephalitis alliance and the book Brain on fire she will know the symptoms of autoimmune encephalitis disease. And I am not mental maybe she will learn something she was wrong. You said we have to be our own advocate and you are correct but I guess if I didn't go through it they wouldn't know how to test her. I am praying for you. You are a great mentor who helps people all the time

REPLY
Lisa | @techi | Feb 4, 2018
In reply to @pdsi43one "Could be pernicious anemia. No one would or could diagnosis this in me. I finally printed..." + (show)
@pdsi43one

Could be pernicious anemia. No one would or could diagnosis this in me. I finally printed off PA info from Mayo and took it in. They then did the B12 and intrinsic factor blood test which confirmed my suspicions.

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@oldkarl you are so right and I knew it was something that wasn't right. I kept getting diagnoses that just didn't add up. I went to the Mayo Clinic and the neurologist thought I needed to go to behavioral therapy she told everything was normal and I would have to deal with what my previous doctors were saying. Today my sister had to go to the hospital with the same symptoms I had at the beginning stripping, memory loss and I knew something was wrong. She would tell me one think and other people even her children something different. She didn't have seizures or falling and being unconscious like me . And she hasn't had to go to ICU she's talking but makes no sense. I told the doctors we had the same symptoms I was falling. So they thought it was a stroke and I said no she doesn't have the symptoms. Then dementia I said again no and he said he didn't think so either but that's protacol which I am aware of. Then meningitis but I knew not that because my son had that and those weren't the symptoms. Then after I told him about my encephalitis and autoimmune encephalitis he said we will check that. I told him also check her ammonia levels. So I have read it can have the same symptoms of dementia and alzhemimer and so I thank God I researched it because my doctors weren't. So I thought the neurologist at the Mayo Clinic all knew but I found out only 2 and I didn't get either one. And I still have headaches just like she does so I might have to get another appointment but this time with Dr.Britton
It seems like we are the doctors. But thank you so much for that information because I almost died twice and been in I CU twice and in the mental hospital 3 times just because of autoimmune encephalitis that was labelled I had conversion disorder and stressed, depressed and anxiety. And it was all because of doctors who didn't do their research.

REPLY
oldkarl | @oldkarl | Feb 5, 2018
In reply to @pdsi43one "Could be pernicious anemia. No one would or could diagnosis this in me. I finally printed..." + (show)
@pdsi43one

Could be pernicious anemia. No one would or could diagnosis this in me. I finally printed off PA info from Mayo and took it in. They then did the B12 and intrinsic factor blood test which confirmed my suspicions.

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@techi Oh, Lisa, I am so glad you have found some answers. Of course I am not glad you have the disorder, but being able to put a name to it is the beginning of control. So glad I could help.

REPLY
friendyshirley | @friendyshirley | Feb 5, 2018
In reply to @pdsi43one "Could be pernicious anemia. No one would or could diagnosis this in me. I finally printed..." + (show)
@pdsi43one

Could be pernicious anemia. No one would or could diagnosis this in me. I finally printed off PA info from Mayo and took it in. They then did the B12 and intrinsic factor blood test which confirmed my suspicions.

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How do I get out of the discussion group. I am swamped with replys

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Mentor
John, Volunteer Mentor | @johnbishop | Feb 5, 2018
In reply to @pdsi43one "Could be pernicious anemia. No one would or could diagnosis this in me. I finally printed..." + (show)
@pdsi43one

Could be pernicious anemia. No one would or could diagnosis this in me. I finally printed off PA info from Mayo and took it in. They then did the B12 and intrinsic factor blood test which confirmed my suspicions.

Jump to this post

Hi @friendyshirley - The easiest was to stop the emails is to click the Unsubscribe link at the bottom of the email you receive. You can also go into your Account Settings by clicking on your name at the top right of the Connect window and selecting Account Settings. Then scroll to the bottom and change your Email Notifications. You can find more information by going to the Getting Started on Connect here:
https://connect.mayoclinic.org/get-started-on-connect/
John
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grandmaR | @grandmar | Feb 14, 2018

Hi!

Could these issues be coming from your spine????

ronnie

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