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Lisa
@techi

Posts: 303
Joined: Jun 18, 2017

Twitching feet, numbness and headache

Posted by @techi, Sun, Jan 28 1:51am

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?

REPLY

Welcome to our community and sorry for the problem. I don’t know if this applies or not, but I do know that if I have had a period of inactivity and then have an active day, my leg and foot cramps are worse at night. Whatever the reason, I hope you find some help for the problem.

Hi Lisa (@techi) — this is a dumb question but do you normally sleep on your side? I ask because I do and sometimes will wake up in the night and depending on how I my arm was positioned under my pillow/head my left arm will get numb and tingly but it will go away in 5 or 10 minutes once I change positions or get up and walk a bit. I have had leg cramps once in awhile but it’s almost always when I didn’t drink enough water during the day or evening.

John

@johnbishop

Hi Lisa (@techi) — this is a dumb question but do you normally sleep on your side? I ask because I do and sometimes will wake up in the night and depending on how I my arm was positioned under my pillow/head my left arm will get numb and tingly but it will go away in 5 or 10 minutes once I change positions or get up and walk a bit. I have had leg cramps once in awhile but it’s almost always when I didn’t drink enough water during the day or evening.

John

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John I sleep on my right side and sometimes I have cramps in my arms but I don’t know if it’s an autoimmune disease or what. I just got my medical records from the Mayo Clinic and it was a little confusing to me. The doctors were saying I had autoimmune encephalopathy but they can’t see that it’s active but I have a strong positive ana and a positive rnp but they are not for sure what autoimmune disease then the hepatologist said I have symptoms of autoimmune encephalopathy systems but they are not sure if the symptoms are from my portal veins so I am still a mystery but only God knows but for sure they said I was misdiagnosed so I will be seeing a rheumontologist at home..oh and also they said I might have limic encephalitis so you just have to pray.

@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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@pdsi43one I do have anemia and I do take vitamin b-12 and iron. I am trying to take as many vitamins I can instead of meds. I am hearing about a lot of recipes with coconut oil and I don’t know if that will help suppress my immune system. I think it has to do with my immune system but not sure so I will be seeing a new rheumontologist and hopefully he will tell me something but just like you I thought I needed some b12. Thank you so much.

@johnbishop

Hi Lisa (@techi) — this is a dumb question but do you normally sleep on your side? I ask because I do and sometimes will wake up in the night and depending on how I my arm was positioned under my pillow/head my left arm will get numb and tingly but it will go away in 5 or 10 minutes once I change positions or get up and walk a bit. I have had leg cramps once in awhile but it’s almost always when I didn’t drink enough water during the day or evening.

John

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Lisa (@techi), thank you for the update. I had not heard of Limbic Encephalitis. Did the doctors give you any reasons they thought you might have this? I was able to find the following information:

Neurology Today — Limbic Encephalitis is Increasingly not Paraneoplastic:
https://journals.lww.com/neurotodayonline/Fulltext/2003/12000/Limbic_Encephalitis_Is_Increasingly_Not.3.aspx

Mayo Clinic – Clinical Updates — New approach to autoimmune epilepsy:
https://www.mayoclinic.org/medical-professionals/clinical-updates/neurosciences/new-approach-to-autoimmune-epilepsy

There is an old discussion on Connect on Limbic Encephalitis that doesn’t have many posts. The last post was in 2013.
https://connect.mayoclinic.org/discussion/limbic-encephalitis/

I am tagging a few members that posted to see if they are still active to see if they have any information they can share. @mlhenderson, @mjenkins00, @lo do you have information on Limbic Encephalitis that you can share with Lisa (@techi)?

Lisa, can you give us an update after you meet with your rheumatologist at home?

John

@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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Oral B 12,helps regular anemia. But if it is pernicious anemia, that does nothing! B12 injections are essential. The intrinsic factor in the intestines bliocks B12. Read about pernicious anemia on the Mayo web site. It is rare and many physicians don’t know or understand. I was also tested for RA, ALS, MS etc. if unattended too long it can cause death!

@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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@pdsi43one thanks for the update. I will look it up and ask the rheumontologist. When they don’t know or can figure out what you have then it’s you need to go to behavioral therapy or you have conversion disorder but they tell me I have limbic encephalitis, encephalopathy, high rheumatoid reading, partial seizure, non epileptic seizures and autoimmune encephalitis. I can go on and on so you try to find out on the Internet and most of the symptoms are autoimmune encephalitis and encephalopathy but this new thing limbic enc cephalitis crazy. And then your state has the worst medical and hospitals. Neurologist who don’t have a clue a rude rheumontologist who keeps running test and telling you it your ana, a general practice doctor who is clueless because he didn’t know you could get encephalitis a second time and neurologist who don’t know what actually seizures are and then you find out in the er from a nurse practitioner that you have anemia and then a nurse tell you that your are having allergic reaction to some of your medicines and a pharmacy giving you medicine you are allergic to or they have been recalled. This state sucks!!! And I am trying to leave but I haven’t found the right state with the best medical services except the Mayo Clinic but it’s to cold in rochester and John Hopkins which I am still trying to look in to doctors and there and of course Duke so I have a few organization that are helping find doctors but I will surely look that up. Thank you and you have a blessed Sunday.

@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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@pdsi43one @techi Hi, folks. I am not sure you don’t know this, but much encephalopathy, rheumatoid, bovine, familial fatal insomnia, etc., is a spin-off of various mutations of Amyloid invasion of brain tissues, particularly Light Chain (AL) It lands in the cortex of the cerebellum, and continues to build until you die. Mine was captured by MRI at Corvallis Samaritan, a local clinic. It can be diagnosed by MRI, or CT, as well as diagnosed initially with the typical protein disorder assays, SERUM FreeLite chain and SPEP. Mayo and others (and of course, my own free paper at https://bit.Ly/1w7j4j8 under Amyloidosis). Also, NIH has lots of stuff on it. But the docs have already given you strong evidence as to its origin. High ANA, BUN, sFLC (anything over 1.4 is a clue that something is going wrong with protein in your blood serum) And just a short addendum. three of my six sisters and one niece and I have cerebral encephalopathy. One sister and the niece have died, another is close right now. It is much the same as Alzheimers.

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

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!

@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

@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.

@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.

@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

@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

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