MS or ALS or really B12 Deficiency

[Rat007]

hello everyone.. I hope you're doing well and as usual you'll clear my doubts.

Diagnosed with b12 deficiency (level 227) in June.. 8 injections shotd given followed by then sublingual 1000mcg (+ 5mg folate) along with Vitamin D, since I found to be D deficient as well. stopped sublingual 3 weeks back as per doctors advised.

initial problem of head pressure and left eye pressure subsidied whereas lot other problems are appearing mainly tinnitus, burning pain( anywhere that last for few mins), painless muscle spams, left hand index and ring finger heaviness and terrible weakness in legs ( along with fever)..

have seen 2 Neurologists, 1 neurosurgeon, 1 ENT surgeon and GP..

Have had 2 MRIs in last 4 months- all came back normal.. CT Scane of sinuses- shown little abnormalities on top of left cheeck sinus ( doctor says this shouldn't cause all symptoms).. all blood markers are normal ( b12 - 1070, folate 18, D - 200 and wbc, rbc etc..)

my family doctor & Neurologist in India said... this is happening because of over reactive motor nerves response...

Still I'm bit worried whether it's Multiple Sclerosis or ALS or really b12 deficiency..? can someone please comment

[Wowo23]

Hi Rat007. I'm finding a lot of ppl with Neuro symptoms with PA. Have you had your instrinic factor levels checked? That will tell you if its a true PA absorption problem or from a temporary lack of certain nutrients and low D. I would ask my doc to check.

[Rat007 in reply to Wowo23]

thanks Wowo23. I'll get this checked, my whole worry is ,MS or ALS.. 😒

[Rat007]

can someone shed light please

[NJMommy]

I was originally diagnosed with ALS, then MS. In many people who have low B12, neuro symptoms mirror MS. Once treatment starts a host of new and weird things pop us as a result of nerves beginning to heal. Macro and micro anemias can also be present when the rest of the blood is out of whack. Once the proper treatment starts, it can take 2-3 months for the bad blood cells to die off and be replaced by the new healthy ones.

There is a difference between true autoimmune PA and low B12 but the bottom line remains the same. The same symptoms occur because B12 is low. The difference in the diagnosis comes into play because of the cause of the low B12, and there are other things to worry about if it is true PA.

Hope this helps, keep a close eye on your levels and keep an eye of your symptoms as they change. I hope you feel better!

[Rat007 in reply to NJMommy]

thanks for all your detailed response, appreciate.

hope all doctors, I've seen are correct and I'll feel better very soon

[Foggyme Administrator]

Hi Rat007

B12 deficiency can cause some quite nasty symptoms, including neurological symptoms...so yes, your symptoms really can be caused by B12 deficiency.

Recovery from neurolgocal symptoms does tend to take longer than recovery from other symptoms because nerve repair can be quite slow. And as we all recover at different rates, it's not possible to predicate how long this will take for each individual.

Here in the UK, the treatment for those with neurological symptoms is injections of 1mg hydroxocobalamin every other day until no further improvement, perhaps for many months - though treatment may differ in India.

The important thing is that if you still have symptoms, you should still be receiving treatment with vitamin B12. Some doctors mistakenly think that if serum B12 levels are in the 'normal' range, then B12 is no longer required. This is not correct. Serum B12 levels are raised by injections and the level of B12 in the blood is no indicator of how effective the treatment is. Your doctor should be looking at symptoms, and if you still the symptoms of B12 deficiency (and it sounds like yo do) then you should still be receiving treatment.

Your doctors should also try to find out why you became deficiency (i.e. pernicious anaemia, coeliac's disease, Crohn's disease, IBS, effect of certain medications, GI surgery etc.).

As you have also had deficiencies in vitamin D and folate, it’s likely that you have an absorption problem of some description, absorption issues being the main cause of B12 deficiency.

Might be a good idea to ask to have your ferritin levels checked (one of the markers for iron deficiency anaemia). Those with absorption,problems often get iron deficiency anaemia (or low ferritin levels) and this can make you feel very ill indeed.

About the MS and ALS: MRI scans are very sensitive and very good a identifiying MS. So the fact that your MRI scans were both normal is good news. And although an MRI scan can not directly identify ALS, your neurologists will have performed a full neurological examination - and there would have been neurological deficits (rather than symptoms) that would have been identified.

So...based on your neurologists findings, MS and ALS are things you shouldn't have to worry about.

I'm surprised that your doctor has stopped your vitamin B12 therapy whilst you still have the symptoms of vitamin B12 deficiency, especially the neurological symptoms. Untreated or undertreated B12 deficiency can result in potentially irreversible neurological damage - something that some doctors don't seem to be aware of. (I'm certainly not suggesting that this is happening to you now, just that it may do if your doctor does not give you the right treatment for B12 deficiency with neurological symptoms (it's a much more intensive regime).

Might be a good idea to go back and ask your doctor to re-commence your vitamin B12 injections - in the UK injections are the only recommended treatment for those with neurological symptoms (thought this may differ where you are). Sublinguals work for some people (following loading dose injections), but they don't work for everyone - so,if sublinguals don't relieve your symptoms, might be a good idea to see if your doctor will prescribe injections instead.

It’s also worth noting that unless the cause of your B12 deficiency is one that can be eradicated (i.e. helibactor pylori infection or the result of certain medications etc), then B12 therapy should continue. If the cause is pernicious anaemia, then treatment should continue for life. (PA can be diagnosed with IF antibodies blood test - though 40%-60% of those with PA test negative, so a negative IF test does not rule out the possibility of PA).

If you have a look at all the PAS pinned posts to the right of this page where you log on (or at the bottom if using a phone), there's lots more information about B12 deficiency and pernicious anaemia, which will help you to approach your doctor about this (you could print the ones relevant to you - particularly those about treatment when neurological symptoms are present and the problems with serum B12 testing - especially after injections).

Just re-assure you again, recovery from neurological symptoms can take some time - the most important thing is that your B12 treatment is continued.

Good luck and post again if you need more help 👍

[Rat007 in reply to Foggyme]

many thanks for your detailed response. Much appreciate.

really good to have people like you around, it gives reassurance more than doctor's visit does..!

[lunez22]

just to 2nd everything above as I am a bit in the same boat. they finally did a spinal tap

have you had that? it can also rule out things like CIDP

have you had an NCS and an EMG? these are the only tests that can give some type of evidence towards ALS along with ruling out everything else (I mean you have to rule out so many other things) but as someone mentioned these should have been done by the Neuro

and if its any consolation try to stay calm (yoga?)! I think worrying about it just makes me worse

[Rat007 in reply to lunez22]

Thanks for your response. I'll get above said stuff tested and let you know