Forum

Puzzled

Wnet to see neuro for my MRI results a couple of weeks ago, he told me it was MS asked what i knew and refered me to MS nurses. I asked him if i needed anything else to confirm like a lumbar puncture he said no. The multiple lesions and history were enough to diagnose.

Now this week i have his letter sent to both me and my GP, it says that i have multiple bilateral periventricular white matter foci and that this suggests underlying MS.

So having been diagnosed on the visit to the neuro, have i got MS? as the term “suggests” seems to me like an indefinite answer.

thanks

I think neurologists are always a bit vauge in letters, mine said ‘it could be suggested that i have rrms’ which made it sound llike he wasn’t sure, but i do and he was.

Not really sure why they do it, but if he told you in person and is referring you to the nursing team, i think it’s a fairly sure bet that you have a formal diagnosis.

If you need clarification you could always ring the neuros secretary and or GP to ask for clarification. Hope that helps.

Laura x

Hi Thered,

When I got a formal diagnosis, it was absolutely unambiguous. It was right at the top, bold, underlined:

Diagnosis: Relapsing Remitting Multiple Sclerosis

(Cannot do underlining here, otherwise I would).

But note that this was several months AFTER I’d first been told verbally, which I had mistakenly (as it turned out) assumed was a diagnosis. The written follow-up to that original appointment had been:

Diagnosis: Probable Relapsing Remitting Multiple Sclerosis

I’d thought, at the time, that he wouldn’t have raised it with me if he wasn’t already sure, so I was quite surprised and confused it was still only “probable”.

It is important to have clarity about whether you’ve been diagnosed, as it could affect a number of things, such as whether you can claim on any critical illness policy you may have, and whether you need to tell the DVLA (if you’re a driver). So I agree with Laura to give them a ring to check. Or maybe see whether the GP interprets it as a diagnosis, or if they are still waiting for later confirmation.

Tina

Thanks for the replies, yes i think i will give them a call. I dont know why they just dont talk in plain English

He told me that he did not need any more tests my previous and MRI were enough, which to be honest i have knew myslf what it was for the last few months, but after 5 years of wondering it was a relief that i was not going mad

You are correct though i need a definate diagnosis as i did take critical illness out around 8 years ago, My mortgage is paid off with a diagnosis but his letter does not make this clear

I understand that time will decide which MS i have relapsing/progressive ect but i at least hoped that some good would come and my mortgage would be cleared up

Anyone else been referred to an MS nurse without MS???

Phoned the hospital today and asked to confirm the diagnosis, i only got as far as the neuro’s receptionist so i asked her if she could shed any light

She told me not to pay too much attention to the wording and that if he told me i had MS thats what i have, I explained that i would have preferred a more clear answer she said do not worry from what she can see i have MS and would not be referred to an Ms nurse if i didnt.

Didnt really cut it though for me tbh and im a little unsure what to do now, i would have preferred some underlining like Anitra’s lol

I understand you’d like the words in writing. I would too. But you have definitely had your diagnosis.

My (old) neuro says one thing to me, and writes something competely different down! Maybe it’s in their training!!

Jx

I don’t think telling you verbally is enough, though - and I’m not sure it will be for the insurance company, either.

If all they get in the way of evidence is: “Suggests MS”, how likely is it they’ll settle?

I do think it needs to be less ambiguous.

It doesn’t really matter that the neuro’s secretary is sure! She won’t be the party you’re trying to convince.

Tina

Thanks

I hope so, i have just sent a claim in for critical illness cover so i hope it goes through without issue, at least if the mortgage is paid off its a burden lifted

TBH thats my thinking, im hoping for the best though. Maybe when i get a letter from MS nurses it will say something else. They can only say no i suppose then its a wait again

Well, with your permission, they may contact your neuro for a report, in which he’ll be able to explain all.

However, mine never had to, because it was all in my GP’s note - bold and underlined. :wink:

Tina

Dont rub it in

I need to get me a ruler