Finally dxed after 32 years of undxed neuro symptoms. It's Pernicious Anemia.
Hi Everyone,
I originally came to this forum more than 20 years ago when I had strange dizziness/balance problems and also tingling/numbness that would come and go in attacks that waxed and waned over months and disappeared for months. My symptoms started in 1994 - I was 29 years old. I had blood tests, MRIs, everything negative, always. It was a frustration. My symptoms went away for about 13 years or so but then came back with a vengeance in 2019. I came back to this forum then because this had been my group for several years when I was undxed but having what I always figured would eventually be MS. But in 2019, I had another MRI - no lesions. I had to accept that this was not MS, but what was it? It was horrible and was giving me breathing problems - shortness of breath, and also very bad autonomic dysfunction which mostly caused autonomic storms of very high heart rate and blood pressure. This is what was going on in 2019 - a flare worse than anything I'd had before because it included breathing problems and these autonomic storms in addition to the usual neuropathy. Well, in 2019, I eventually got better. Over the years in this forum, I learned to supplement certain vitamins - specifically Vitamin D3 and B12. So, I once again, started supplementing these - I was not consistent about this when feeling better. I also took metropolol tartrate for blood pressure and went on prozac at the suggestion of a psychiatrist that my neurologist insisted I see. In any case, I recovered 100% and was back hiking and backpacking for the next few years.
Flash forward to November 2025. I had sudden balance problems and then numbness, burning, neuropathy, shortness of breath, autonomic storms - all the same things as in 2019 and even a brief episode of double vision, which I had never had before. I felt so sick - like I was dying, and once again, I was seeing neurologists - also horrible because now they were biased by my history and immediately wanting to diagnose me with FND and send me to a psychiatrist. I agreed and once again went on prozac - it did not help. I started my D3 and B12 supplements again. That didn't help either. I began to deteriorate further over the subsequent weeks. I basically did not leave my bed. I fell into a deep depression and started to lose my ability to walk. I had no balance. I had trouble showering because when I closed my eyes, I would basically fall over - I had to hold on to the walls. I lost proprioception. I realized my HMO (Kaiser Permanente) was going to kill me, and I knew I needed to leave so I had more flexibility to see specialists. I switched providers and started madly researching what was wrong with me with AI. I knew it was not MS at this point. I had begun to think it could be ALS due to twitching and muscle atrophy - I lost all my muscle mass and lost weight suddenly, too. But I had recovered from this same thing in 2019, so I knew it could not be ALS. But then I started remembering my grandmother having Pernicious Anemia although she was in her 70's, and it manifested in only back pain. However, my B12 was high and had been over 1000 for 10+ years. Nonetheless, I asked AI the magic question - "Is it possible to have Pernicious Anemia with very high B12." To my shock, the answer is yes, and it happens when Intrinsic Factor Antibodies interfere with lab assays. At this point, I was supplementing a ton of B12 sublinguals, and I had MMA, homocysteine, Intrinsic Factor Antibodies, and Parietal Cell Antibodies, blood smear, CBC. Everything was normal or negative with the exception of Intrinsic Factor Antibodies, which was positive. That cinched it. Intrinsic Factor Antibodies are highly specific to Pernicious Anemia. After 32 years of wondering what was wrong with me, I now know. It was Pernicious Anemia all this time.
I had load injections of B12 but then my doctor wanted to taper me, so I deteriorated again. I joined a support group on FB with 50K or so people, and the group advocates for self-injecting and sourcing B12 from Canada or Germany. So, this is what I have been doing, and I feel, much, MUCH better. B12 deficiency can do horrible things (without treatment, it is eventually fatal) as it is needed for red blood cells, DNA synthesis, and neurological function. My proprioception issues were due to demyelination of my spinal cord - specifically Subacute Combined Degeneration (SCD).
The reason why I always thought I must have MS was because many PA symptoms are very much like MS. Fortunately, B12 can reverse many of the symptoms if a person is treated in time. I'm not sure how it will be for me as I've had many years of insidious B12 deficiency, but for now, I'm self-injecting hydroxocobalamin EOD and hoping for the best. Many of the worst things have resolved, so I am hopeful.
Anyway, I wanted to close the loop on this after having been here so many years and having gone through many years of gas-lighting as many undx'ed people do. This group was very helpful to me and was probably the reason I recovered in 2019 with my sublingual B12, which I learned about from people here. So, I am forever grateful to this group for helping me and supporting me even though I was undxed.
I also am writing this for other undxed folks who end up in this forum, wondering if they have MS. I am here to say do not trust your serum B12 if it is normal or high. If you have neurological symptoms, do not let anyone gaslight you into thinking it's anxiety, FND, somatic disorder, conversion disorder, or any of the psychiatric diagnoses that I was labeled with, erroneously, over the last 32 years. Rule out pernicious anemia, even if your B12 is normal or high. If symptoms persist, get MMA, homocysteine, IFAB, PCAB, blood smear, and full CBC tests.
All the best to you all,
Kathy aka hootswithowls
I originally came to this forum more than 20 years ago when I had strange dizziness/balance problems and also tingling/numbness that would come and go in attacks that waxed and waned over months and disappeared for months. My symptoms started in 1994 - I was 29 years old. I had blood tests, MRIs, everything negative, always. It was a frustration. My symptoms went away for about 13 years or so but then came back with a vengeance in 2019. I came back to this forum then because this had been my group for several years when I was undxed but having what I always figured would eventually be MS. But in 2019, I had another MRI - no lesions. I had to accept that this was not MS, but what was it? It was horrible and was giving me breathing problems - shortness of breath, and also very bad autonomic dysfunction which mostly caused autonomic storms of very high heart rate and blood pressure. This is what was going on in 2019 - a flare worse than anything I'd had before because it included breathing problems and these autonomic storms in addition to the usual neuropathy. Well, in 2019, I eventually got better. Over the years in this forum, I learned to supplement certain vitamins - specifically Vitamin D3 and B12. So, I once again, started supplementing these - I was not consistent about this when feeling better. I also took metropolol tartrate for blood pressure and went on prozac at the suggestion of a psychiatrist that my neurologist insisted I see. In any case, I recovered 100% and was back hiking and backpacking for the next few years.
Flash forward to November 2025. I had sudden balance problems and then numbness, burning, neuropathy, shortness of breath, autonomic storms - all the same things as in 2019 and even a brief episode of double vision, which I had never had before. I felt so sick - like I was dying, and once again, I was seeing neurologists - also horrible because now they were biased by my history and immediately wanting to diagnose me with FND and send me to a psychiatrist. I agreed and once again went on prozac - it did not help. I started my D3 and B12 supplements again. That didn't help either. I began to deteriorate further over the subsequent weeks. I basically did not leave my bed. I fell into a deep depression and started to lose my ability to walk. I had no balance. I had trouble showering because when I closed my eyes, I would basically fall over - I had to hold on to the walls. I lost proprioception. I realized my HMO (Kaiser Permanente) was going to kill me, and I knew I needed to leave so I had more flexibility to see specialists. I switched providers and started madly researching what was wrong with me with AI. I knew it was not MS at this point. I had begun to think it could be ALS due to twitching and muscle atrophy - I lost all my muscle mass and lost weight suddenly, too. But I had recovered from this same thing in 2019, so I knew it could not be ALS. But then I started remembering my grandmother having Pernicious Anemia although she was in her 70's, and it manifested in only back pain. However, my B12 was high and had been over 1000 for 10+ years. Nonetheless, I asked AI the magic question - "Is it possible to have Pernicious Anemia with very high B12." To my shock, the answer is yes, and it happens when Intrinsic Factor Antibodies interfere with lab assays. At this point, I was supplementing a ton of B12 sublinguals, and I had MMA, homocysteine, Intrinsic Factor Antibodies, and Parietal Cell Antibodies, blood smear, CBC. Everything was normal or negative with the exception of Intrinsic Factor Antibodies, which was positive. That cinched it. Intrinsic Factor Antibodies are highly specific to Pernicious Anemia. After 32 years of wondering what was wrong with me, I now know. It was Pernicious Anemia all this time.
I had load injections of B12 but then my doctor wanted to taper me, so I deteriorated again. I joined a support group on FB with 50K or so people, and the group advocates for self-injecting and sourcing B12 from Canada or Germany. So, this is what I have been doing, and I feel, much, MUCH better. B12 deficiency can do horrible things (without treatment, it is eventually fatal) as it is needed for red blood cells, DNA synthesis, and neurological function. My proprioception issues were due to demyelination of my spinal cord - specifically Subacute Combined Degeneration (SCD).
The reason why I always thought I must have MS was because many PA symptoms are very much like MS. Fortunately, B12 can reverse many of the symptoms if a person is treated in time. I'm not sure how it will be for me as I've had many years of insidious B12 deficiency, but for now, I'm self-injecting hydroxocobalamin EOD and hoping for the best. Many of the worst things have resolved, so I am hopeful.
Anyway, I wanted to close the loop on this after having been here so many years and having gone through many years of gas-lighting as many undx'ed people do. This group was very helpful to me and was probably the reason I recovered in 2019 with my sublingual B12, which I learned about from people here. So, I am forever grateful to this group for helping me and supporting me even though I was undxed.
I also am writing this for other undxed folks who end up in this forum, wondering if they have MS. I am here to say do not trust your serum B12 if it is normal or high. If you have neurological symptoms, do not let anyone gaslight you into thinking it's anxiety, FND, somatic disorder, conversion disorder, or any of the psychiatric diagnoses that I was labeled with, erroneously, over the last 32 years. Rule out pernicious anemia, even if your B12 is normal or high. If symptoms persist, get MMA, homocysteine, IFAB, PCAB, blood smear, and full CBC tests.
All the best to you all,
Kathy aka hootswithowls