NeuroTalk Support Groups - Any ideas for this man!

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hi, i do not post often, but this caught my attention.
I do hope your husbands recovery is this 'simple' andd caomes from B12 problems.
What came to mind when i read this was Lupus or vasculitis (CNSV).

I agree you may have keep pushing for answers , I wiish you the best and i keep reading for followups.
keep faith,
DayTripper

It's possible that all the symptoms are due to the low B12. Have you read Rose's site, linked to in the stickies, explaining about B12?

Thanks again for taking the time to answer this post. Yesterday my husband got a call from the neuro office and was told every test taken was negative even the spinal tap. I was hoping the spinal would lead us in the direction. My husband was told that the doctor is reviewing his chart and he will speak with us on election day. That is the date of his next appoiintment.

Sher, keep on pushing...

prodding, reading, learning and questioning...Docs really don't know everything. I've had a couple admit that-soo, We've the vested self interest to do so. The NEXT step is to tactfully approach the subject of what to do next..w/the docs-in a WAY that THEY want to DO it all.

Ask after reading up, all those silly seeming questions...you'd be surprised how many all of us here [me especially] have asked over time. To me no question is insignificant!

Keep being the advocate! Hugs and strength and patience and perseverence! - j

What was his B-12 level?

Doctors often say "normal" even if it's low. Do post his level here; ask the doctor if you don't have it.

BTW, Rose offers some good reasons for taking the methylcobalamin form in particular; definitely check out her site.

if you havent already, down load Liza's charts/spread sheets....get all of DH records, and plug the lab results into the spread sheets......and proceed to fill in the blanks.......remember methylcobalamin on an empty stomach.....good luck

Quote:

Originally Posted by SherNY (Post 27697)

Hi

Thank you for replying to this question. I am the wife of this man and he is 45 years old. He had many tests since the first incident in May. We are now on our 3rd Neuro dr. Yes he had his carotid arteries checked right away doctor said it was fine also an eccho. He has had the 4 evokes test and nerve tests of the arms and legs. He had a brain mri and it did show lessions. Three weeks ago he went for a spinal tap and we are still waiting results for that and a 2nd brain mri. He was told his b-12 was low and started taking folic acid 1 month ago. Yesterday the doctors office called and told him to start injecting b-12 once a day for 10 days and then once a week for a month. Then he will be tested. He did his first b-12 injection today and he is complaining of joint pain especially in his knees. I hope this post makes sense. I have so many things to say and I am not good at putting it down on paper.

Hi! The only thing I can think of that hadn't seen mentioned (although I read this very quickly) that might have such symptoms is Lyme Disease, and that testing is often false negative.

BUT...the low B12 alone could indeed be the cause of all these symptoms. It can co-exist with other things, like Celiac Disease and Lyme Disease (these can both cause lesions, too), but it is very possible this could all be related to just B12 deficiency. Eventually, there should be some other testing to determine WHY the B12 deficiency. You can check out the B12 deficiency pages in The Gluten File (very bottom of right bar)...it includes a link to Rose's B12 information. I'd also consider taking the oral methylcobalamin daily, particularly when the shots are scheduled down to once a month. Most people do just fine with only oral B12 (high dose, 1000-2000mcg daily), but there isn't anything wrong with the shots. Once his level is up and high, he can ask about maintaining it with oral methylcobalamin.

I agree with whoever said the last event sounded like a possible seizure (sounds similar to my what my daughter's seizures were like), too, but even seizures can be a symptom of B12 deficiency. There could be multiple factors here, but if the major problem is the B12 chances are good you will see some signs of improvement within the first three months (or even sooner), although sometimes it takes longer depending on severity/duration.

Good luck, and I hope you'll keep posting here. Lots of good information here :).

Cara

Hi Cara--:D I already told Sher that her hubby should be checked for celiacs too. Grasping at straws sometimes works huh? Sher is a good freind of mine and I have met and talked with her hubby a few times. Of course, like most of us with neuropathy problems, he looks fine. He has had so many tests and nothing so far. The first doctor noticed the low B12 levels but told them it wasn't a problem. I'm glad one of the docs does know the importance of B12 and has him on shots now--it's a start!

Thanks everyone for all the info, it is really appreciated. Deb

Dear Sher & husband
Just want to wish you all of the best. Some people have tons of insight and good advice, most of us just read and remember you in prayers and warm thoughts.
Just remember you are surrounded by good friends in this difficult situation. Guess we have all been there, knowing something is wrong but not yet having a dx.
Per, Norway

When Sherrill gets a chance she will probably post more, but as of now, they do not know anymore than they did. Kevin saw the doctor this week and he said he hasn't found MS, but isn't ruling it out--didn't find anything else either. Kevin does have to continue with the B12 shots and the doctor is going to test him for celiacs, which I truly hope he doesn't have, yet at least it would give them some answers.