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Could they have got it wrong?

Hey,

Wasnt sure which forum to post this on so decided this one.

Im just wondering whos had blood test for vit b12 thats comes back showing a deficiancy? and how common is it to have vit12 def and ms.

I was diagnosed with RRMS last year, supported by MRI and LP results, but would having a vit12 def have an effect on that? Hope thats making sense, I know what Im trying to say haha.

Ive managed to convince myself over the past week (im awaiting results for blood test) that I havent got ms after all!

I’m B12-deficient and a lot of MSers seem to be. I get injections 3 monthly to top me up. Many of us find out we are B12-deficient because it is one of the easiest things to check out when someone is showing neuro problems (I can’t honestly remember whether mine was checked before or after diagnosis - it was a long time ago.) My B12 levels must have been in the pink for about 10 years now on account of the injections. I’ve still go MS though, sad to say. Sorry.

Alison

x

Hi, Vitamin B12 deficiency can certainly cause MS like symptoms, and it can, when extreme, cause nerve damage. It’s diagnosed, as you know, by blood tests. It is not dx through MRI or LP and does not cause MS, so no, sorry to say, you still have MS although having the Vit B12 deficiency treated might help your symptoms.

From what I can tell by internet sites (so I am certainly not an expert!) it can cause pernicious anaemia (or perhaps is the same thing… doesn’t seem clear) which is an auto immune condition, same as MS … so it seems more likely that having MS may have caused the problem with Vit B12 than other way round.

I have been tested for Vit B12 and am ok. I think what happens is that when we get MS symptoms we are tested for loads of other stuff (inc vit B12 and vit D) and therefore some people are at that point found deficient… but of course if we didn’t have MS symptoms we would never have been tested so it wouldn’t have been found. Must be millions of people who are deficient but never have reason to be tested. Does that make sense?

Sorry to dash your hopes of not having MS… I think with MRI and LP results, and obviously your symptoms, you will have to accept that it is MS.

Anyway, google it. There’s loads of info online.

Take care,

Pat x

Goodtotalk, you are technically right to say that Tiger’s doctors could be wrong, in the same way that my doctors might have been wrong all these years and I do not actually have MS either, despite all the hard factual evidence to the contrary.

But I think it is a little ambitious on your part (to put it charitably) to suggest - as I think you do - that Tiger’s problem is quite possibly caused by some vaguely-defined ‘syndrome’ that you happen to have a bee in your bonnet about. I think newly diagnosed people have enough to deal with without this kind of nonsense, quite frankly.

Alison

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Goodtotalk, you are technically right to say that Tiger’s doctors could be wrong, in the same way that my doctors might have been wrong all these years and I do not actually have MS either, despite all the hard factual evidence to the contrary.

But I think it is a little ambitious on your part (to put it charitably) to suggest - as I think you do - that Tiger’s problem is quite possibly caused by some vaguely-defined ‘syndrome’ that you happen to have a bee in your bonnet about. I think newly diagnosed people have enough to deal with without this kind of nonsense, quite frankly.

Alison

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Well said Alison! Goodtotalk also seems to have a misaligned atlas (?!), but not ms/possible ms from what I can gather, so probably isn’t best placed to be offering support or advice on this forum? Candida can cause a range of symptoms, but none mimicking ms as far as I’m aware.

Fee,

You have stated repeatedly that you don’t have MS and you have been banned from here on several occasions for sharing your usually downright daft theories.

Don’t you think newbies have enough to deal with?

Please go away.

LittleTiger it is awfully hard work coming to terms with an MS diagnosis (12 years in here, and it’s work-in-progress.) But the start is the worst, no question, and you are in the thick of it - it is very early days. I am really sorry that this trouble has come to your door. As I suggested in an earlier post, no, I’m afraid the chances of it all having been a horrible mistake are vanishingly small. But it is the most natural thing in the world to cast around for something - anything - that might get you off the hook of an MS diagnosis. We’ve all been there. This is, I think, all part of the process of getting one’s head around some very unwelcome news and slowly accepting it. I hope that you will always find on here that there are people who have been in a similar boat, and who can help you on your journey, as I have been helped so much over the years. Finding you have MS is bad news, no doubt about it, but it is possible to make a good life with MS. Really, it is. So hang on in there.

Alison

x

Dear LittleTiger x

I was diagnosed last year and I am still in denial about it. I spent years convinced there was something wrong with me and then I got the diagnosis and felt so relieved. Now I wonder if maybe they made a mistake. I think its a common response to being diagnosed. Good Luck my lovely x I braved going to a local MS meeting the other day with people who are working aged MS and so met lots of people newly diagnosed like me. I would really recommend it.

Fee,

I don’t understand why you are here spouting off about candida and misaligned atlas joints again? You have categorically stated in several forums (including this one) that you do NOT have MS amd even that you don’t even believe MS exists as a disease. Please stop confusing the issue for genuine MSers and people going through the diagnostic process who come here seeking information with your own home grown half baked theories.

Or as Anu put it, “Please go away”

LittleTiger, so sorry your post has got hijacked buy this nonsense but your question is perfectly valid and enough to do anyones head in. Vit B12 deficiency is definitely one of the “mimicers” that is looked for in the diagnostic stage as the symptoms can be very similar to MS. But if your MS was diagnosed from the results of an MRI and a Lumbar Puncture I would say that you do have MS (sorry) and also have Vit B12 deficiency as well. Sorry again :frowning: B12 will cause similar symptoms but it won’t cause the changes found on MRI and LP that are characteristic of MS.

I have had MS for 9 years now and I still find myself graspinf=g at starws hoping that the Drs may have got it wrong and I don’t really have MS after all. Not sure what else it could be that woud cause all these symptoms and disability but my favourite fantasy is that I don’yt actually have these disabilities eiyher and miraculaously I will eap from my wheel chair because it was all a mistake… Sadly I think the reality is that I have been taking another of my frequeent holidays in Egypyt; I just love that river De Nile… And may be that is where you are going with the hope that the Vit B12 deficiency cancels out the MS diagnosis.

hugs to you

Belinda

Hi everyone,

Thanks so much for your responses, and sorry that I seem to of caused abit of trouble!

Ive been driving myself crazy over the past couple of weeks, and been pretty much attached to the internet looking things up :confused:

The other thing is, I’ve just changed neuros (had a few problems with the old one), and the new neuro has just done a new mri scan on me (didnt use contrast) and Im kinda of hoping he’ll look at it and say I havent got ms? I asked if he wanted to do another LP and he said no as they got what they needed from that. So does anyone know why he would of done another mri scan?

Im going mad lol

Thanks again x

Hi LittleTiger,

As others have already said, it’s unlikely that your new neuro will say the original diagnosis was wrong especially as it was supported by an mri and a positive lp as well as the symptoms that led you to see a neuro in the first place.

I would imagine that the reason that your new neuro has requested another mri is because you’re his patient now. Some neuro’s do order additional mri’s further down the line too. I think the best thing to do really is to ask him to clarify things for you, but prepare yourself to be told that you do have ms.

The other thing I’d suggest is to try and steer away from googling too much. Sometimes it can cause no end of exra distress which you can well do without at the moment.

It can be just as hard being told and accepting that we have ms as it can be when we’re in limboland not knowing what it is. The difference is that sometimes we hold onto that hope that the docs have got it wrong and we haven’t got ms at all

Speak to your new neuro L.Tiger to put your mind at rest. Remember where we are if you need to chat

(((hugs)))

Debbie xx