This Sherlock is at a cross roads on ... - Pernicious Anaemi...

Pernicious Anaemia Society
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This Sherlock is at a cross roads on where to go for treatment?

So I'm having a major issue. I have PA and the MTHFR gene mutation so within the year I switched my cobalamin inj. to a metylcobalamin inj. I take it once, to save money, or twice monthly depending how I feel. I had PA for probably 8 years before being diagnose at age 24. Yeah, I seriously thought some nights I was not going to wake up in the morning. I felt horrible. Just recently I started having neurological problems; nerve pains, muscle spasms, forgetfulness, dizziness, inability to pee, etc. These problems I've had in some form, mostly nerve pain, but I'm seeing a sudden worsening of the issues. Is that normal when PA is supposedly being treated. I guess I just don't know who I'm supposed to see such as a Neurologist, a hematologist, or is this lung related and should I be seeing a lung doctor because maybe oxygen isn't getting where it should be. I also have asthma and a lot of allergies; seasonal and food. I can't seem to find a expert in PA and my doc just keeps sending me for labs and every other specialists under the sun. Has anyone else with PA dealt with this and what route worked best for you?

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Hi PaintLadie are you in the U.K?

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No, USA.

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About 99.9% of the population have a MTHFR mutation. Only one mutation has been shown to possibly cause problems - homozygous for C677T. If you do have this mutation (like 9% of the population) then taking methylcobalamin instead of hydroxocobalamin or cyanocobalamin will make no difference at all. Taking methylfolate might cause an improvement.

Here's an explanation. healthunlocked.com/pasoc/po...

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Yeah, my Nurse practitioner has kind of hit a wall with me. All she has said is I have this gene mutation and cannot convert cyanocobalamin therefore I need methylcobalamin to be able to absorb put it to use. I really feel for whatever reason my b-12 injections are not working as my neurological problems are not getting better but slowly worsening.

My b-12 levels although high normal are according to my NP still on the low end for how much B-12 I inject. So therefore, the crossroads. Either, I have MS or something else wrong with me, or my PA is more complicated to treat than I thought. MS seems pretty straight forward to diagnose, but problems with PA less so. I have been to Gastro docs, have had my heart checked, 2 endoscopies, a laproscopy and so many expensive tests done with nothing so show for them that I am at a loss where to go next. Money is tight and I'm getting worse and I need to be more thoughtful as to my next steps because these docs will just send me everywhere for testing and labs without a thought of the cost or if I can afford it.

I am going to check out that link right now.

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I just thought I'd mention that I did self-injections every other day with methyl B12 for four years and noticed that my numbness in my toes was getting worse (I, too, have MTHFR C677T so thought methyl B12 was better) so I switched to hydroxy B12 about 3 months ago and the numbness is almost gone from that toe. So it does make a difference which type of B12 you need, as we are all different and sometimes it takes experimenting with the different types to find the right one, especially with neurological problems. Good luck!

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Thank you for the link. I'm going to print it and give to my NP.

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I am also in the US and am right there with you two in terms of frustration. I asked my doctor about being being tested for MTHFR and she said there was no point, because there is no cure. I have been taking Cyanocobalamin for almost a year now. Because of lack of sensation it very hard to know if I am getting worse, but lately my elimination system is shutting down.

This is the scariest stuff I have ever dealt with! I understand your frustration! If you live in an area where there is s good Functional Medicine Doctor, they may be to help. Unfortunately, most of them are totally self-pay.

If you live close to a Mayo Clinic, going there may be an option.

Good luck!

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I'm in the 505 also! I used to see a lot of Holistic self pay practitioners, but stopped they never could figure me out. My NP integrates both. I like her because she sits with me for an hour if necessary. She is also the one that checked me for that gene mutation. It is hard to find a Doc here with time and who cares. I'm from up north. So i have to drive to see a doctor.

I have PA because I don't have intrinsic factor and at around age 24 my then doc was baffled I had this issue. She had also been testing me for everything under the sun and I think this was just another test she was surprised showed anything, but finding adequate treatment is even harder when the underlying cause is a mystery and the treatment that works for all the vegans is not working for me. I am very grateful I found this community. Hopefully our combined knowledge and experiences will help us help our docs to figure us out.

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Can you please private message me and send your phone number and/send me contact information for your

NP? I am having a very bad day and have to see a new medical person, my doctor is not helpful! Thanks, Sita

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I'm in the US.. You're describing a lot of my concerns..

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I guess there are not enough of us to make this PA issue important enough for study here in the US. Finding a knowledgeable doctor is very hard. They all seem to kind of lump PA in with dietary related b12 deficiency and treat them the same, than send you on your way.

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Evidently not.. I'm scared to death. With "treatment" for PA, I, too, seem to be getting worse. I don't have the energy or the brain function to know what to do next. I can barely read anymore.

I'm in Alabama.. nice to meet you.

Feel free to reach out.

Power in numbers, right?

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I know what you mean. The brain fog is horrible. I forget and lose everything, and it's embarrassing not being able to find a word when conversing with someone. I feel very helpless and almost worthless in that I can't do more than the little bit I am currently doing. If I try to lets say clean the closet on top of keeping the house barely in order I pay for it the next day and maybe many days after that. Not to mention, I live off of chocolate and energy drinks because I'm tired all the time.

New Mexico...nice to meet you too!

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Did you get my private message? I was asking you for the name of your NP and giving you my phone number. Maybe if we can put our heads together we can get some help here! Sita

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Hi, my general practitioner had me get some scans, see an endocrinologist, a rheumatologist, a neurologist, another neurologist who specializes in sleep studies, a hematologist, and a gastroenterologist. The sleep study neurologist sent me to a ear nose throat doc. I would say the scans and endocrinologist ruled out a lot, as did the gastro. Neurology took so long there was nothing left to study. Hematologist got my iron fixed so my GP can handle it going forward. Rheumatologist mostly helped me frame what I needed to improve so my GP could help me.

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