BrainTalk Communities - Forum https://www.braintalkforums.org/ en Sun, 19 Jul 2026 07:44:28 GMT vBulletin 60 images/misc/rss.png BrainTalk Communities - Forum https://www.braintalkforums.org/ <![CDATA[Finally dxed after 32 years of undxed neuro symptoms. It's Pernicious Anemia.]]> https://www.braintalkforums.org/forum/neurological-disorders-and-injury/multiple-sclerosis/274190-finally-dxed-after-32-years-of-undxed-neuro-symptoms-it-s-pernicious-anemia Wed, 15 Jul 2026 04:15:29 GMT 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...
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]]> Multiple Sclerosis hootswithowls https://www.braintalkforums.org/forum/neurological-disorders-and-injury/multiple-sclerosis/274190-finally-dxed-after-32-years-of-undxed-neuro-symptoms-it-s-pernicious-anemia Cervid CWD TSE PrP Transmission to Humans July 2026 Review https://www.braintalkforums.org/forum/neurological-disorders-and-injury/creutzfeldt-jakobs-disease-cjd/274166-cervid-cwd-tse-prp-transmission-to-humans-july-2026-review Mon, 06 Jul 2026 18:44:20 GMT Cervid CWD TSE PrP Transmission to Humans, has it already happened and being masked as sporadic CJD, What if? July 2026 Review ...
https://chronic-wasting-disease.blog...ission-to.html

https://prpsc.proboards.com/thread/2...ns-july-review

terry]]> Creutzfeldt Jakobs Disease (CJD) flatfish https://www.braintalkforums.org/forum/neurological-disorders-and-injury/creutzfeldt-jakobs-disease-cjd/274166-cervid-cwd-tse-prp-transmission-to-humans-july-2026-review Keep On Moving - July https://www.braintalkforums.org/forum/neurological-disorders-and-injury/multiple-sclerosis/274165-keep-on-moving-july Sun, 05 Jul 2026 15:22:41 GMT
MS creates some real challenges to keep on moving. It helps to inspire each other on how to find ways to move.

Did you stretch in your bed, swing your arms, roll side to side today? Or perhaps you did housework? Or exercised in a pool? Tracked your count of steps? Chased your cat around the home? Pushed the wheelchair wheels with your arms at the store? Post them here and we can support and egg each other on.

REMEMBER: This is a keep on moving thread, not keep on exercising! Any moving is important it doesn't have to be exercise! Even Science proves that.
I've been keeping up with the new exercises prescribed by the physical therapist a few months ago. And the new pedometer counts steps somewhat differently from the previous one (and some days it just doesn't work) but my average step count for June was 1,159 steps/day, based on 25 days. That is just a tad better than May (1,157).]]> Multiple Sclerosis agate https://www.braintalkforums.org/forum/neurological-disorders-and-injury/multiple-sclerosis/274165-keep-on-moving-july July chitchat https://www.braintalkforums.org/forum/neurological-disorders-and-injury/multiple-sclerosis/274156-july-chitchat Wed, 01 Jul 2026 16:00:24 GMT
How are things going for you?

People don't drop in here as much these days, but just in case there is anyone reading, I am perking along. Today I'm headed to the lab for what I hope is routine lab work.

I'm still crocheting hats in my spare time, while watching movies that come to me on DVD from the local library. The rest of the time I'm going about my "ADL" which I understand is short for "activities of daily living." Those have a way of taking up a lot of time.

Carry on. Hang in there. Stay up. And if you have a moment or two, why not add some content to this forum?]]> Multiple Sclerosis agate https://www.braintalkforums.org/forum/neurological-disorders-and-injury/multiple-sclerosis/274156-july-chitchat These fat-filled brain cells may be making multiple sclerosis worse https://www.braintalkforums.org/forum/neurological-disorders-and-injury/multiple-sclerosis/274154-these-fat-filled-brain-cells-may-be-making-multiple-sclerosis-worse Mon, 29 Jun 2026 19:18:54 GMT Date:June 29, 2026Source:Netherlands Institute for Neuroscience - https://www.sciencedaily.com/releases/2026/06/260621060307.htm
KNAWSummary:Scientists have uncovered a surprising clue that may help explain why multiple sclerosis (MS) progresses rapidly in some people but not others. In brain tissue from patients with severe MS, researchers found large numbers of “foamy” immune cells packed with fat droplets after absorbing damaged myelin. These overloaded cells appear to switch from helping repair the brain to fueling ongoing damage and inflammation.

https://www.sciencedaily.com/release...0621060307.htm]]> Multiple Sclerosis Prot https://www.braintalkforums.org/forum/neurological-disorders-and-injury/multiple-sclerosis/274154-these-fat-filled-brain-cells-may-be-making-multiple-sclerosis-worse The Neurologic Effects of Menopause on Multiple Sclerosis and Cognition https://www.braintalkforums.org/forum/neurological-disorders-and-injury/multiple-sclerosis/274143-the-neurologic-effects-of-menopause-on-multiple-sclerosis-and-cognition Tue, 23 Jun 2026 19:12:01 GMT https://www.neurologyadvisor.com/features/menopause-and-multiple-sclerosis-neurologic-manifestations/
Menopause is increasingly recognized as a neurologic transition that may contribute to cognitive decline, heightened Alzheimer disease (AD) risk, and worsening outcomes in multiple sclerosis (MS).1-3 Growing evidence of these associations underscores the need for greater awareness and continued research into the neurologic effects of menopause and the potential role of neuroprotective interventions.
https://www.neurologyadvisor.com/fea...anifestations/]]> Multiple Sclerosis Prot https://www.braintalkforums.org/forum/neurological-disorders-and-injury/multiple-sclerosis/274143-the-neurologic-effects-of-menopause-on-multiple-sclerosis-and-cognition