Has anyone ever had speech issues , I seemed to have developed spoonerism, and also my fine motor dexterity Is impaired but but fast and strong movements don’t seem to be.
I have a brain mri on Thursday , I have done loading doses of b12 and now just do one every 2 weeks as fatigue has gone but Slight brain fog ( back of head ) and tinnitus and cold hands remain.
Yes I definitely had speech issues in the early days before diagnosis and when my PA was under-treated. Also fatigue, brain fog and tinnitus.
All have now mostly cleared up with an adequate injection regime(twice a week works for me), with the exception of the tinnitus.
That’s good to know ,
It feels like my brain is going too fast and when it comes to choose between two words it’s not coherent enough to form the sentence ,
I’m glad your symptoms have improved. To know that things can improve gives hope .
Thankyou
I had the lot, tinnitus very severe, dropping things, unsteady walk, falling downstairs, brain going blank, vision deteriorating, etc.. Now all much improved apart from connecting brain with fingers. When typing I always manage to hit wrong letters even though I know which one I should hit. Also speech slurred, a bit like sounding drunk.
Hi ;
I have very similar symptoms, just hoping to improve on the brain fog and hands ,
What treatment method did you use ? Did you inject , so you still ?
Sam
Went five months with nothing. Tried capsules, patches, even sublingual, but no effect whatsoever except if I took massive sublingual dose, 25milligrams or more, a trace did appear in urine. Sickly and the amount unsustainable. Then managed to get hold of ampoules and syringes and after a few loading doses have now managed to get to every two weeks. Hopefully will spread it to monthly soon if continue to get supplies. Should have mentioned that even though brain a lot clearer I still have vacant moments and complete lethargy. Can't get interested in anything. That's not like the old me.
Ted.
Hi benbo7, May I ask if you still have tinnitus?
Yes, but barely noticeable now. It was almost unbearable for several months.
That s what I m experiencing since mid June. Occasionally I have one or two quieter day. How long ago since you started your treatment. I had my injections in the end of September but my tinnitus are still quite load most days. I have been counting weeks and months every so often.
Yes, I had my first injection in September too.
That was after seven months without. Tried every alternative, none worked. Then managed to get some ampoules and it has been a gradual return to almost normal.I had to ration injections at first due to problems with supply as result of Brexit. but now have regular supply promised and awaiting delivery from Pharmasana. Still have tinnitus but mild now and hand co-ordination still a bit off. Only occasional brain lapses. Getting there slowly.
Just worried that if my tinnitus will ever get better. I sometimes have to take sleeping pills.
If all other symptoms have gone or lessened then I'm sure your tinnitus will go too. It can take months to undo the damage.
I still have tinnitus although It feels it’s more in the back of the head than ears , keep going with the b12 that’s what I’m doing and many say be patient and try to minimise stress And cut our alcohol that seems to effect this deficiency.
Thanks guys, I feel my tinnitus are more on the top right of my head. I don’t drink tea, coffee and alcohol for many months now.
You are doing well. No fatigue wonderful. I'm sure other things can improve .Hooe your brain mri goes okay.
I've had two. Good ti have them.
Thanks, fatigue went in about 36 hours of first injection,
That was after almost 2 years trying to Go to interpret the blood results properly, which we know on the nhs are insignificant anyway.
I’m just left with the speech issue , numb/ cold hands , sleep isn’t great and brain fog / slight nausea .
I personally think this all stems In the gut , so I’m trying to improve my diet too .
Thanks for reply.
Yes some things take alot longer than others . Fatigue for me exasperates symptoms. So I think it's a very positive start you've had.
Good on you improving diet but if it's PA It won't help absorption.
I'm extreme. Had PA at least 35 years, along with pancreatic disorder, malabsorption, and now hiatus hernia along with being on PPIs, and they had the nerve to give me dietary advice. Insult and ignorance from nurses, who ought to know better.
I'm a retired lab tech and former member of the Association of Nutritional Therapists.
Hi ,
Thanks for your reply .
I am still trying to find the root cause of my peripheral neuropathy issues. I’m pretty sure it’s gut / nutritional deficiency/ b12 as active b12 was low and also mch was high and transferrin also high.
Do you know on the answer to the following questions ?
Why once P.A. is diagnosed is it considered a life diagnosis? I’m assuming the obvious route , auto immune - intrinsic factor anti bodies attacking the parital cells , causing the inability To extract b12 ,
Is this process through gut healing through diet / fasting etc not currently considered reversible ?
Also what is the best way , method , conditions , to heal peripheral neuropathy?
With the huge strides being made it gut microbiology at the moment I do believe it’s a matter of time before many prevalent diseases we are seeing the rise of are treated via the gut biome.
Regards
Sam
There are many reasons for B12 deficiency. Diet lacking animal protein, acid blockers like omeprazole or Rennies, enzyme deficiency, achlorhydria (low acid), pancreas problems, malabsorption, or true PA.
True PA is for life and often is inherited, so check with family history. Future genetic research might lead to changing things but as far as I know no-one is looking into that.
Gut healing will help but the problem starts in the stomach and lack of IF which is often an immune disorder.
Some gut bacteria might produce a small amount of B12, they do in livestock but uncertain in humans. So it might be helpful to add Propionibacteria, if you can find it, to probiotics, can't hurt anyway.
Peripheral neuropathy needs as much B12 as you can give it. It can take many months to recover but if it is very far advanced there is a possibility you won't get all feeling back, though if that were the case you would still have other nerve problems too.
Saliva and mouth bacteria are thought to start the releasing process so if you use mouthwash it might be worth reducing frequency.
Hope I've helped.
Ted
Thankyou Ted
Very helpful .
One last question based on peripheral neuropathy, hands feet Speach a little abs brain slowness a little. Do you know the recommended dose.
I injected 1mg every day for about a week then stopped for 10 days for blood test. .now I’m going to go back on to either every day or ever other day . My fatigue went in 36 hours of first injection .
Thanks Ted.
Best practice is 1mg daily until symptoms totally gone, then gradually increase length between injections, so you sound about right. I wouldn't go less than weekly until you're completely back to normal.
No good to me, but some people can absorb sublingual sprays. In my case I had to go to ten times the daily dose. a bottle that should have lasted four months was gone in two weeks and barely a trace in urine. It might be worth a try, though, unless you can get ample supply of ampoules. Patches are another option, but also didn't work for me.
This is what I bought from eBay.
.Vitamin B12 Spray 2500mcg | Vegan | for Tiredness & Fatigue | by Horbaach
Hi, yes I also have had speech issues which were rather embarrassing, as I was having to take phone calls at work. It was an awful experience about 10 years ago & I was having monthly injections then, but didn’t know this could be a symptom at the time. However, now, I quite often have trouble finding my words which is damned annoying. Also, I most definitely could not sit an exam either, due to problems retaining information. Apart from all that, I’m Ok (not)! 😂😂
Sorry, re. your comment “this probably stems in the gut” Past 3 days I’ve had a ‘down’ feeling which i thought was coming from my stomach so took a tablespoonful of organic apple cider vinegar & hey presto, felt great afterwards so must be low stomach acid, I think. Maybe this would help you. Got to be worth a try. Best wishes.
Yes, I too had the spoonerisms, also tinnitus and finger/toe numbness. I started with B12 S/I alternate days for two weeks, ( tinnitus went) then s/I every 3 days, for several weeks, then every 4 days and so on u til I felt I could go longer between injections without symptoms returning. You might need to inject twice a week for a bit longer then gradually reduce.
Yes, I had trouble writing and signing my name before injections. This resolved with adequate treatment. Best of luck to you in your recovery!
Thankyou all the best to you also
I have word finding issues. I know what I want to say and can't find the words. My kids get upset with me. It's been going on for a couple years, but I thought it was post concussive syndrome. Been on injections a week now. Not sure if there was a correlation but I definitely had less brain fig for a few days after my injection. Sadly it didn't last until the next dose.
My symptoms reduce after daily loading doses of about a week , then I stopped for 10 days to get blood tests and symptoms returned, in loading now for atleast a month 1mg per day hydroxycoblamin .
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neuropathy, pins, and needles in the face!! Has anyone else had this?
Just wondering has anyone had a positive outcome from seeing a neurologist with pins and needles and numbness in hands and feet?
Has anyone else had peripheral neuropathy with high folate?
Has anyone had acne/oily skin due to b12 deficiency?
