Will I get a diagnosis next week?

New diagnosis and before diagnosis
1

I’m seeing my consultant next Friday after a lumbar puncture in January. This was positive for Oligclonal bands in the spinal fluid and negative in the serum. I had two MRI’s last year which have both shown over 30 high signal lesions but not in typical places for MS.

My neuropathic pain is getting worse all the time, along with the dead/heavy right arm and leg. My balance is pretty awful a lot of the time. My consultant wrote to me with the LP results and said, the results of the LP were what they looked for in people with MS and therefore ‘it is quite possible that you could have MS’. He also said we would discuss this further at my next appointment. My gut feeling is that a consultant wouldn’t mention MS unless he was sure that was what a person had.

As this has now been going on for nearly two years, I’m desperate for an answer one way or another. Am I likely to get a diagnosis next Friday or is it likely he will say ‘still don’t know’? I’m getting more and more anxious as the appointment gets nearer.

Lynne

2

Hi Lynne,

I’m sorry, but I wouldn’t like to bet on this.

“Quite possible” might be a diplomatic way of paving the way for diagnosis (so you don’t get such a shock), but it might also mean he genuinely isn’t sure yet, and all you’ll be told face-to-face is that he’s sorry he still can’t say.

They tend to be reluctant to commit, if there are features inconsistent with the “usual” pattern, as these could indicate something rarer. It’s strange your lesions don’t seem to be appearing in the characteristic patterns of MS, and I’m guessing he will find this a bit of a stumbling block.

Then again, I, like you, felt my consultant wouldn’t have broached the topic of MS, if he didn’t think that was what he was seeing. And sure enough, I did go on to get a firm diagnosis. But not without a few hurdles first…

Sometimes, there’s a gap between what their experience tells them, and what they can clinically prove. So although my consultant was pretty sure from the outset we were dealing with MS, it was another few months before he felt it was “proved”.

MS is an odd diagnosis, in that it can never be 100% certain, in a living person. The only conclusive proof is a tissue sample after death! So basically, in practical terms, it’s a judgment based on all the evidence. When there’s sufficient evidence, they can say: “If it walks like a duck, quacks like a duck…” etc. But if, at any stage, it looks like a non-duck, they’ll be hesitant to say it’s a duck!

I hope you do get your answer. I felt better (briefly) after mine. But try not to be too disappointed if he says he still can’t tell. It’s a serious and difficult diagnosis, and they’re very wary of being hasty, and getting it wrong.

Tina

3

My appointment is tomorrow!! I’m getting really nervous now. I just hope one way or another I get some kind of answer and support. The last 20 months have been pretty awful and whilst I know things are necessarily going to get any better, just to be told what is wrong will help a bit.

Lynne

4

Good Luck Lynne, I’ll be thinking of you. Let us know what happens. Teresa xx

5

Aww! good luck for tomorrow Lynne xxx

Really hope you get some answers xxxjenxxx

6

Good luck Lynn, I hope it goes ok, thinking of you Chis x

7

Good luck honey I hope you get some answers.

Cathy