I was diagnosed with Crohns in 09 and prescribed mercaptupurine 6. 1012 built up my B12 injections (every other day/weekly/monthly) 2 days after my first 3 month jab you could split my brain in half! Sharp pain on left side of head and right side completely numb with stiff neck. I was so dizzy i dropped to the floor and the right side of my face went completely mumb and was dribbling. It went after afew hours and Doctor said nothing to do with the jab and left it, but since then it seems the b12 jabs dont seem to work. Always feel im not in my own body, confused (Taking 2/3 minutes to recognise my own toothbrush and then putting toothpaste on the wrong side! Had to throw the brush and paste in the sink to stop myself doing it then my temp raised that i looked purple! Extreme exhaustion, dizzy spells, jelly legs, pins and needles in hands and feet, palputations which are so bad sometimes they wake me up! Sometimes chest pain with it, Blurry, light sensitive eyes feeling like im going mad thinking everyones against me and crying for no reason! Today i have a nasty shooting pain on left side of head shooting to back of my neck and temp up and down to the extreme!! Cant go out on my own anymore and cant go to parents eve with my 3 children!! Very upsetting Please Help!!
Forgot to say my Gastroenterology consultant says it's nothing to do with my condition and I should go to my GP but my GP has turned to me and said "What do you want me to do about it" It's been going in over 2 years now I have just turned 40 it's not only ruining my life but all my family around me. Please help someone!
So sorry your GP is so unsimpathetic. Can you not change doctors. You are entitled to decent care. You must find someone who can help you.
Thanks Isabel it has been mentioned in the past as it took her 2 years to agree to shared care with my Consultant for my Crohns! All my meds have now been suspended as no one knows whats wrong? Just nice to know after looking on this forum I'm not on my own.
Hi Julia, this sounds awful. I can't believe your Gastroenterology consultant is just dismissing it as "nothing to do with your condition". Crohns will definitely have an effect on lots of other things. I'm no medical expert, but it must mean your digestive system isn't working properly, because you're low in B12. Have they tested for other vitamin deficiencies? If it's not absorbing one vitamin, it may mean you are very low in others. I do know from other posts on here, that you need a lot of the vitamins to be at least halfway up their scale, in order for the B12 injections to be used by your body. A lot of people recommend taking a good quality multivitamin to try to help address this problem. (That is assuming your digestive system will absorb it?). Marion
Thanks Marion, Crohns is the reason for my deficiency but they are adamant these symptoms are not related? My consultant aranged a brain scan which cameback normal but he said he wrote to my GP saying I needed to be refered to a nurologist but my GP hasnt received anything and refuses to refere me? Am cought between a rock and hard place! Dont get me wrong I dont miss the chemo drugs but my nurse is worried the longer I stay off them the less likely i will stay in remission. Nobody has mentioned extra vitamins. I tend to eat alot of soup as i get very hot and dizzy if i eat a big meal. Thank you for your reply.
Hi again Julia, I don't think taking a good multivitamin would be harmful. As long as there's nothing in them that would react with your Crohns! Soups can be very good, probably best if they're homemade. Do hope your doctors get things sorted, and you get your neurologist appointment. They often seem incapable of communicating with one another! In these days of emailing, surely it's not that difficult! Good luck with getting it all resolved. Marion
Hi again Marion,
There are no dietry triggers with my Crohns they think it's hereditry (Dad died from Bowel Cancer and Brother had UC at 16 has now had bowel removed) so will try vitamins. Only reverted to soup when these latest symptoms of dizzyness, eratic blood pressure and palpitations started as i found eating food agrivates it for about an hour. My GP has categorically said She will Not refer me. Happy Days
Hi Julia
cant you get in touch with your consultant and as him to re send letter to your GP. Its a pity some GPs have this "I am always right" syndrome. It would be nice to be properly listened to as a person and not just a number on the GPs daily list. I do hope that you get sorted soon.
I have Crohns, and it can cause lots of extra-intestinal symptoms (arthiritis is a common one), but what you're describing sounds like a deficiency - in fact it does sound like a B12 deficiency. I had similar, though perhaps not so severe symptoms about 6 weeks after my very first injection, but felt a lot better once I'd got some more.
Have a look at crohnsforum.com. There's a wealth of stuff there about vitamin deficiencies.
Hi Isabel,
He said he has re sent the letter but my GP insists the letter does not state that I shouldbe refered then went on to say "So what if your diagnosed with something? Thats just a name for the way you feel" Was in complete shock. This is why I joined this forum last ditched attempt at not feeling so isolated.
Have you reported your GP. No doctor has a right to speak to you in such a manner. Can you make an appointment and get your husband to go with you. The GP may not be so aff hand if there is someone with you. My GP who has just retired was one of the nicest people I know and always listened. His replacement is younger but he too is very good. You dont get the feeling you are being rushed out the door. My Pa and vit b12 deficiency makes me very up and down but at least the GP listens to me.
Yes it is a B12 deficiency and have been having injections for over 2 years now but still no change in my symptoms they are actually getting worse. Thank You for the link I will have a look.
Hi Isabel, She said that with Him there! I had the same idea but it didnt work lol
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.
Have they at least checked your levels with a blood test? Regular iron-deficiency anemia is also quite likely with Crohns, so they certainly should be doing that.
Most parts of the world seem to get monthly B12 injections, but the NHS is insistent on sticking to 3 months. I found B12 patches do make a noticeable difference; not so much the pills or lozenges which rely more on your bowels working properly. It doesn't seem there's any problem with getting too much of the stuff so you don't have to rely on the GP completely.
Thank you for that will look into the patches.
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.