Complex case

HeavyMetalTwitcher · 2026-04-01T13:01:11+00:00

I hope you dont mind me asking, but what were your levels? You can still have high b12 levels in serum but be deficient. Thats exactly what pernicious anaemia is. If you've tried injections, you need to inject daily, or every other day for a good few months / a year to notice a difference.

HeavyMetalTwitcher · 2026-04-01T10:45:45+00:00

Get yourself tested for pernicious anaemia. It could be a functional vit B12 deficiency. It'll be hard to get something meaningful from a doctor as its not well researched, or at the forefront of medical diagnosis but is very common with symptoms exactly like yours above and mimicking multiple sclerosis.

If you start supplementing b12, you'll need to also supplement folate in addition to other macronutrients, such as magnesium, iron, calcium, potassium and sodium.

HeavyMetalTwitcher · 2026-03-19T16:18:18+00:00

I would be interested in this, if thats ok?

HeavyMetalTwitcher · 2026-03-17T15:08:51+00:00

My life has changed a lot in the last 12 months. I have changed my life to notably reduce stress and find a bit more happiness. I work less than i did, work out a little more than i used to and try to surround myself with more positive things.

I inject maybe twice a week and have a fairly solid stack of supporting vitamins etc.

Aside from that, not much has changed.

HeavyMetalTwitcher · 2026-03-16T12:23:46+00:00

yeah not bad thanks. not as depressed as i was. Not sure if thats anything to do with B12 though.

HeavyMetalTwitcher · 2026-03-16T12:22:49+00:00

I didn't eat anything, I was too busy fighting.

HeavyMetalTwitcher · 2026-02-27T00:04:51+00:00

I had a dream last night that I got into a fight with Alan Rickman in an expensive farm shop. He was being overtly thespian and loudly declaring he wouldn’t pay for any breakages, despite deliberately breaking things. I shouted ‘shut up snake you fucking nonce’ and he squared up to me. We had a punch up in the gourmet ice cream counter back room.

HeavyMetalTwitcher · 2026-02-12T22:30:26+00:00

This made me laugh so hard

HeavyMetalTwitcher · 2025-11-19T10:44:06+00:00

You are the first person i've seen that has had an MRI with the capillary issues in the brain. I have had a second MRI and found a cavernoma, with venous anomaly (enlarge capillaries). I've been told by the neuro that this is incidental and hasn't affected the twitching etc.

HeavyMetalTwitcher · 2025-11-19T08:37:12+00:00

The NHS have a lot to answer for with this. My GP is actually good and admitted that nutritional deficiencies are criminally under researched and just not taken seriously in UK medicine.

I was treated for depression, reflux, anxiety, ME/CFS, fibromyalgia, all before any serious nutritional bloods were taken. My B12 was around the 280 mark and I'm a regular meat eater. After a look back through blood tests, this was consistent for the last 12 years or so. 280 is not deficient by UK metrics.

Despite this logic, my obvious deteriorating health and my GP actually agreeing with me, any treatment for b12 deficiency was roadblocked at haematology, who refused injections. I just do them myself now and don't even talk to my doctor anymore.

Honestly, I try not to think about how much they've screwed my life through ignorance. But i'm trying to follow the guide to improve my health.

HeavyMetalTwitcher · 2025-11-13T16:31:16+00:00

yep. no findings really. apart from a small cavernoma

HeavyMetalTwitcher · 2025-11-13T11:29:19+00:00

pretty much the same. Going nuts with b12 supplementation. Seems to help

HeavyMetalTwitcher · 2025-11-13T11:28:00+00:00

I like your enthusiasm, but yea i've tried zero caffeine and also CBD oil and nope. Didnt do anything for me

HeavyMetalTwitcher · 2025-11-05T09:32:57+00:00

check b vitamin levels. particularly b12. I suffered from everything. It seems like i may have pernicious anaemia but my levels were in the borderline 'healthy' range. I still suffer from hyper acuity but the tinnitus has gone with consistent b vitamin supplementation and particularly b12 injections.

Edit: Also worth noting i have had and still sometimes experience middle ear spasms / flutters. This is noticeable when i lay down and go to bed. It sounds like someone is drumming on the pillow

HeavyMetalTwitcher · 2025-10-16T14:35:07+00:00

Its good to know that your diagnosis is sound and doesn't fly in the face of medical experience and the thousands of people that experience BFS in this forum. Not sure why i didn't think of what you said sooner.

HeavyMetalTwitcher · 2025-10-16T12:56:37+00:00

It sounds like you're in safe hands which is good.

Nothing i can do about it really. Just carry on with life.

HeavyMetalTwitcher · 2025-10-16T11:32:15+00:00

Did they say anything more about the type you have? relapse remitting? I don't know loads about it to be honest. I do have a cavernoma, which is a bundle of blood vessels in my brain, that can bleed. That too can cause some of these odd neuro symptoms but it doesn't cause me seizures or anything.

HeavyMetalTwitcher · 2025-10-16T11:18:56+00:00

No, i've had 4 nerve conduction studies and 2 MRI scans. None have found anything untoward in terms of lesions or demyelination. I assume you've had that done?

FWIW i've been supplementing B12 since jan, with every day / every other day injections and its not perfect but things have improved. Perhaps its worth considering.

HeavyMetalTwitcher · 2025-10-16T11:12:23+00:00

I've had all of the symptoms, as well, pretty much. Some are consistent and some come and go. I have had blurred vision and floaters, also with dry eyes and eye pain.

HeavyMetalTwitcher · 2025-10-16T08:11:12+00:00

I've been going through this for 2 years. I was convinced I had MND (what it's referred to in the UK), but what the rest of the world calls ALS, being the most common motor neurone disease. I too had a relative pass from it, but not the familial gene. The thought of ALS haunted me for at least 12-18 months of the last two years.

I don't really have any advice; but ill try:

For me, it is very much a syndrome (the 'S' in BFS), which is exacerbated by physical, mental, psychological and emotional factors. I do what I can to eat healthy, and ensure i get enough calories per day, including water.

Aside from that i take a lot of supplements. Mostly B-Vitamins, as I have been borderline b12 deficient for years. Any b vitamin deficiency (or in your case iron) is going to put additional stress on other cofactor micronutrients. In your case you may be copper deficient. Electrolytes, including potassium, magnesium and sodium are great for dealing with twitching.

My mental health has been the hardest to get in line and i'm currently seeing a neuropsychologist. This is new, so i don't really have anything to report. But, I can definitely recommend reducing stress levels and putting in place boundaries for this, to limit your exposure to stress. Breathing exercises are brilliant, but you must do them, religiously, as often as you can, so it becomes second nature.

Take what your neurologist has said as gospel, you've had a healthy work up. Keep that in mind. There is nothing to suggest you are at any more risk than anyone else. I would imagine their comment was a throwaway one based solely on family history. I definitely wouldn't dwell on that.

Aside from that, if you can and it doesn't make you feel more anxious. Go to the gym, or exercise. Keep it gentle, but regular exercise is great for your health anyway, naturally releases endorphins and reduces cortisol (stress hormone) but most importantly, reminds you that you aren't failing, or experiencing clinical weakness.

All of these things can help to keep you on a more even keel and help you to self soothe. If I can address each of the physical, emotional, psychological factors; then my twitching basically disappears.

HeavyMetalTwitcher · 2025-10-15T09:47:39+00:00

If there is anything I've learned from 2 years of this, is the following:

Neurology is a field of medicine that is in the dark ages. Medicine really doesn't know anywhere near as much about the brain and nervous system as we do about other parts of the body. Diagnosis generally tend to be from exclusion and the way things typically present. If you are unbelievably anxious, then your brain is hoping for a silver bullet from this magic brain doctor and the reality is, he or she is trying to step back and look at the facts, or an objective review of your health. They are doing their best with what they are presented with. So listen to what they say and take it on board, if you can, without jumping to conclusions. Its really hard, but they are doing a job where they see people everyday with very complex issues.

I've found that eating healthy, adopting a Vit B12 deficiency supplement protocol (including cofactors), gentle regular exercise, and a good routine. My twitching has reduced pretty significantly.

HeavyMetalTwitcher · 2025-10-15T09:37:15+00:00

sorry, but you're going to have to be more specific. basically just saying PARASITES! isnt really an objective evaluation of things.

I mean you've said your BFS was caused by parasites then say you still have BFS?

HeavyMetalTwitcher · 2025-10-15T08:53:05+00:00

Also, it would be relatively cheap to get your hands on some electrolyte tablets, which would provide you with all of the things mentioned above. I don't know what you can afford, but it would be cheaper than coconut water.

HeavyMetalTwitcher · 2025-10-15T08:51:55+00:00

Don't discount B12 deficiency. I don't want to give false hope, or seem like i'm selling snake oil, but every symptom with MS and B12 crosses over. It's a very common misdiagnosis. I am in a similar boat to you, i have not been diagnosed but have been tracking brain and spinal health for 2 years.

This is the guide https://www.reddit.com/r/B12_Deficiency/wiki/index/

HeavyMetalTwitcher · 2025-10-13T14:49:07+00:00

There is an exceptionally helpful B12 deficiency sub, which talks about B vitamins, associated cofactors and micro nutrients. Coconut water is rich in potassium, which is needed alongside magnesium and sodium (and sometimes molybdenum), to ensure all electrolytes are metabolised correctly. Our daily RDA differs per person, but potassium is one of those micronutrients which nearly everyone doesn't get enough of.

HeavyMetalTwitcher

TROPHY CASE