Third Neurologist

[Nackapan]

Thank you for your thoughtful posts.

Trying to disipher consultation. Glad my husband was with me as concentration went...great!

He dId know about b12 defiency and PA. He had been b12 deficient himself!!. As no one knows how deficient and for how long he can't predict what recovery I will make. He does think I can improve though. ..phew. To not test b12 levels and continue with injections at the rate i find helpful. I should be able to get to 2 monthly injections his opinion . Letier to Gp.He thinks my light noise and vision problems due to b12 deficiency. Only time will tell. As for head pain and headaches he thinks chronic tension headaches ongoing. (Muscle headcramp) caused by initial vertigo. ??

He totally disagrees with second neurologist about post concussion and variant migrain. Not to take over the counter pain relief because of rebound headaches. Tricky!!

2 week gap endorphins will settle. Spine mri in his opinion not needed. But periodic brain ones.

He suggested a paediatric dose of Propranolol? ?

He said I was very unlucky not to get on with amitriptyline. In the 5-10% not to tolerate.

So continue with b12 injections. Not sure about drug though. Feeling weak from trials. What was interesting but giving me worse symptoms is b12 defiency affects the cerebellum the same part of the brain that cramps giving headaches.

So mixed feelings really . I hate uncertainty but that's what I'm left with.

As alot of us are.

[Cherylclaire Forum Support]

Good luck that you got a 3rd neurologist who has had personal experience of B12 deficiency. Perhaps even aware that those with the condition have differing symptoms !

I've never had a headache for example - except twice, along with very bad vertigo, because I had had to take antibiotics, to which I seem to have developed a reaction (or B12 depletion?). Headaches and vertigo are common B12 deficiency symptoms, it seems from this forum.

I was offered Amitriptyline a number of times but refused it. Don't feel that I am depressed, except where low as part of general mood-swings - so part of symptom, not a condition. I know it is also used, in lesser doses, for pain, particularly nerve pain.

Shame spinal MRI ruled out again. A lot still to discuss with GP - do you get a written report copy too? Sometimes reveals thought process behind decisions.

(Worth reading: one consultant had written that I drank 9 units of alcohol a day! Really doesn't help to have that on your record. )

Give yourself time to absorb all this- consultations can be very draining, and difficult to make important decisions. Perhaps a good thing when concentration goes a bit awry, because they get to see deficiency in action: a glimpse of part of what you are having to cope with regularly. Education by Deterioration : how awful is that ?

Will you get given a follow-up appointment with this neurologist, or is it now back to you and GP ?

[Nackapan in reply to Cherylclaire]

Back to G.p. interesting you say virtigo and headaches common in b12 defiency. That's one thing the neurologist said was unlinked! ! That was my rather dramatic start. He couldn't give a reason for first ever virtigo attack though. He was good at understanding severity of headaches. Really don't want to take heavy drugs but he suggested paediatric dose.

I'm also not depressed. Poorly and fed up yes. That's why I turned down sertraline also used for headache prevention but seems to have very little success going by stuff I've read. Amitriptyline was on lowest dose 10mg and worth the trial but completely drugged me . Yes fewer headaches but bedbound. Bit confusing about totally disagreeing with other neurologist. It was interesting what he said about b12 defiency affecting the cerebellum part of the brain. Anyhow had my b12 injection today. Have a headache but sure b12 will set to work yet again. Thank you for your reply. I have also passed on his comment about delay in treatment to the surgery. It was 5 weeks. They didn't ring with low serum b12 result of 106. I had to ask for it and then ask to be booked in for injections which couldn't be done until seen by a doctor!! . Yes I've asked to be copied into neurologist letter to gp. Enjoy your 9 units of alcohol (not) lol. 😅I'm still dreaming about a glass of wineor a bit of normality., but no way at the moment with these headaches.

Hope your appointment happens soon TC

[Nackapan in reply to Cherylclaire]

Oh I actually paid to see this neurologist as quite desperate. I chose one with a speciality in headaches. Didn't know about him now interested in b12 as he was deficient. The last one I saw was on the NHS. He discharged me on amitriptyline (which I tried 10mg and not tolerated ) with instructions to take me up to 150mg. The G.p found this very amusing having seen my reaction to 10mg. She would've referred me back in but as starting all over again would be 18-22 week wait.

Very expensive visit yesterday but didn't know what else to do as Gp struggling to understand my symptoms and seems to think of just need motivation and serotonin raised and I'll be fine. ....I wish!

[Cherylclaire Forum Support in reply to Nackapan]

Let's hope it proves to be worth it, Nackapan .

Looked up cerebellum ("little brain") and this is "important to the subconscious control of movement..... co-ordination of movement and maintenance of balance and posture". Sounds about right for a B12 deficiency link, doesn't it ? Yes, interesting.

Also a strange place to have headaches, tucked away at the back, I would have thought. Have heard quite a few people on this forum discussing headaches, connecting onset with B12 deficiency, and now wonder if their's are also located in the cerebellum ?

Also checked symptoms list in Martyn Hooper's book: vertigo mentioned, but not headaches.

Vita Sciences have a list of 100 symptoms, which you might say is more or less guaranteed to mention headaches. It is, on the other hand, number 13 on the list: "persistent headaches". (Unlucky for some !) Also has "occasional vertigo, a sensation that the room is spinning" which might be understating it somewhat, but still reached 23. I like this list, because it also has "everyday diarrhoea" as a symptom, which might be nearing the top of my list after 3 years, but only gets to number 65 on their's. Still, it's on there, so I don't have to keep trying to prove that I don't have IBS. To myself even, since 3 gastroenterologists believe otherwise. You might as well just tape the first one and press replay.....

Which is why I think you have done really well in getting alternative advice on your 3rd visit to neurologists !

...Still a shame about the spinal MRI.

Glad you aren't depressed, though it wouldn't be at all surprising would it ?

Take care.

[Nackapan in reply to Cherylclaire]

Thanks you. Do feel a bit flat today as headache. I think too much to think about and weary though. Glad you think yhis new info. Good and worth going. Certainly tests your resilience time and time again doesn't it? The headaches arnt confined to that part if the head but pains shoot up from thar part all in the same muscle group going over your head up your nose and round your eyes.and ears. Hence a good explanation for glasses clampef to head. Had granulated sugar with some strawberries. Thst caused shooting psins from the back of my head (had ti melt sugar) neuroogist ssid thst made sense. sounds about right no 13!. Yes it does make sense if to do with balance . He described it as the nerve damage causing all this group of muscles going into vice like cramps. How annoying to be told Ibs all the time. Always reassuring to see on a list what you are suffering I feel. An acknowledgement. T C

[cocoa]

Glad you had a good consultation.

It is interesting for me because I am diagnosed with idiopathic (i.e. unknown cause) cerebellar ataxia. Other family members have been affected but they do not have a diagnosis either.

In desperation I went to a private GP and that is who recommended B12 injections.

I hope you continue to see improvements. It is a slow process but with helpful advice here you are not on your own.