Crohns disease and Vit B12 deficient Need Help!

I am almost lost for words.  How can medicine move on if doctors are so insensitive to their patients.  It would seem a few only want to treat colds or anything that doesnt require them to think.  Please try to find another more simpathetic doctor.  I wish you all the best.

Dear Julia,

All this seems ghastly.  I do not know much about Chrons disease.  I am pretty sure that your gp must have sent you for a colonoscopy to determine the seriousness of this disease.  I would imagine that B12 would help due to the immune system.  I also thought that Chrons disease was treated first with steroids or anti-imflamatory.  All the systoms you presents are pretty drastic and in my opinion need a serious regular follow-up by a specialist.  Sometimes one has to insist with GPs and request to be referred to one of those specialists.  I also understand that all the pain you are going through could be due to some kind of nervous disorder and perhaps a neurologist can help you understand better why you are going through all this misery.  From my own experience, because I have suffered from chronic pains since my youth and I am now over 64, I have found that stress, too much of everything, wrong diet and worrying before  knowing the true cause, can create havoc.  I truly hope that you can have a good dialogue with your GP and/or specialist. And that you will soon find out the right treatment.  Bless you.  Catherine

I am puzzled by a few things. You refer to chemo and remission. Your drug is used for chemo and crohn's. I take it you haven't had cancer in the past.

I would be inclined to agree your latest symptoms were not due to the B12 injection.

However some are possible side effects of the drug.

If I had one sided numbness and dizziness I would be off to the hospital as it could be a TIA - a mini temporary stroke. At the time you wouldn't know if it were temporary or not. I am puzzled by the turning purple - I wonder if this is blue? This could be a lack of oxygen or circulation. It would be helpful to take your pulse and note your breathing. Anemia might be a factor.

With Crohn's you are also likely to have poor absorbtion of other nutrients particularly the fat soluble vitamins. You may need other supplements. The former can lower mitrochondrial functioning  ie energy including in the heart. High doses of vit c may help offset this. You may also need to look at wider B12 supplemenation as per other threads here.

As a starter I would go along with the idea of consulting a neurologist.

I would insist on two things a copy of any reports including lab results. In most countries you are entitled to this. I would ask the specialist's scretary for a copy of his report letter.

I would consider asking the GP for a referral for a second opinion to someone of your choice.

However my preference would be to change doctors. No-one expects a Dr to know everything, but the days of a dr being god are done. Almost inevitably I have found that the records almost always have errors.

At the least I would want an explanation of her plan, what she has done and the results and what she plans next. Nothing is my guess.

Now it may be that future tests and consultations are negative - which at least rules out some things. You could ask for homocysteine and methylmalonic acid tests and total and reduced glutathione tests to check out your overall B12 functioning not just the current level. However I suspect with that GP you will be wasting your breath. Of course you have to put it in a suitable way. "I know you are the expert but  I wonder if perhaps you have considered ....... " My guess is that she wouldn't know much about it.