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Pernicious anemia
I have familial pernicious anemia coupled with Hashimoto’s disease as did my mother, grandfather, and great uncle. They are both autoimmune diseases. The thyroid goiter was removed when I was 27. I have taken thyroxine since then. About 8 years ago tingling in feet and hands was diagnosed as B12 deficiency. However, the intrinsic factor associated with pernicious anemia was not known about by physician. Decline in Tingling, fatigue, awkwardness in walking, etc became slowly worse. I finally went on line at Mayo website and discovered my diagnosis. I printed out and took to my Dr.
Test were done. Confirmation ! After beginning B12 monthly injections, symptoms abated some, but there has been no significant improvement. Taking balance classes gave been the only help to keep from falling.
Is anyone out there doing something else besides B 12 injections for PA?
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@ellasgirl13 and @june22 . Have you thought about going to Mayo Clinic? This link will connect you to the application:
https://mayocli.in/1mtmR63.
Appointments are not gauranteed, but it is sure worth the effort.
The following link might also be of help:
https://health.usnews.com/best-hospitals/rankings/rheumatology
I wish you all the best. Please, can you let me know what happens?
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3 ReactionsThank you very much for this information. I will certainly check out the Mayo Clinic and the hospitals on the other list.
I have many of the symptoms listed in your and other PA chats. I have been dealing with PA for 40 years since its first onset.
In my case, the accurate ID of PA connected to a growing B12 deficiency took a classically trained GP who specialized in allergy and had a career long pension for finding the cause!
What I find particularly interesting is the fact that most of the symptoms and family histories that I read on this chat site are diagnostic of Celiac Disease!!! In my family’s case the CD goes back at least 3 generations.
For instance, one of the first symptoms of CD is a loss of the ability to absorb B12 and its associated PA. My GP’s prescription was monthly B12 injections. They were quite successful at helping the associated anemia and fatigue, but CD damage is so pernicious in many ways, that B12’s use is limited.
To add to the confusion of multiple symptoms and a general feeling of over all decline is a CD patients medical welfare is the fact that as many as 200 symptoms have been associated to CD.
Finally, unfortunately modern medical training has tended to only focus on symptoms and not the causes according to my recently retired GP and good friend Len. And as a result, most MDs are not particularly good at connecting the dots of seemingly unrelated symptoms.
Suggest anyone with multiple symptoms go to any of the increasing Celiac Disease websites that list the classic CD symptoms and count how many of the symptoms on the list that they have!
The first time I did that, In had about 80% of the list. If you have more than 2 or 3 on the list, you might want to contact the MAYO’s Celiac Center.
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2 ReactionsWhy would I do that as she is under the health and care of two Doctors who monitor her.
She has done thorough study and research herself to get as far as she has. At least she found out what her problem is and is able to live with it. I’m not interested in advice as it’s not me that has PA.
I’m just saying it is not an easy thing to live with and maybe help someone else. If someone has a new thing about what is effective for PA, that would be nice. But you can’t say she doesn’t have PA as it’s been proven. Thanks for all your interest and input. I appreciate your help.
Thank you for the hug. Much appreciated. 🤗 hug back to you. 💕
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Have you considered your pa could be absorption? You should be getting injections. I had very bad arrhythmias before starting injections. Have you had your IF factor checked?
Once a month is nowhere near enough. The recommendation for PA w neurology symptoms is every other day if using hydrox or everyday w cynacoblamin. You also need to be taking cofactors and monitoring them. I’m at 8 weeks of injecting every other day and my neurology symptoms are much improved.
Which anemia is this?
Does anyone know of a doctor or facility in metro NY area that will do the correct tests for pernicious anemia? I can't seem to get past this hurdle with my providers. My grandfather and uncle had it and I have had some type anemia that may have caused or worsened polyneuropathy.
How do you work with pernicious anemia