Forum

Should I tell the neuro?

Hi, I would like some advice please, I have had my first initial appointment with neuro who is sending me for both brain and spinal scan (long wait thou) he said the goodnews was he didn’t think it followed the pattern of ms or Parkinson’s . I don’t think I agree but I am a novice! The thing is they ask for your symptons and some history. I didn’t know where to start so I just did main current symptons not too much. I didn’t tell him that in my early 20s I had ME it was severe for 10 months and then a slow recovery. Prior to this at 19 I had a bad spell of fatigue and was told I had IBS which improved after gluten free diet instigated by my mum and i improved over a period of time. Then after the birth of my second child I had blood tests for rheumatoid arthritis as my hands were very stiff with some pain( came back negative) and that disappeared after a short time. However that’s is exactly the same prob I have now with wrists and hands. I didn’t mention these things because I didn’t want him to think I was a hypochondriac . Should I have said or should i stillI mention it next time before scan or after the scan or isn’t it related at all and best leave it in the past. I’m 47 now and still not old enough to know what to do for the best!!

MAYBE A SHORT LIST OF CURRENT PROBLEMS AND ANOTHER OF PAST MEDICAL HISTORY.

(SORRY ABOUT THE CAPITALS)

when the symptom started and when it recovered.

it seems to me that our neuros are like detectives and need to put all the pieces together.

good luck

carole x

Past events are important - as Carole said, neuros need to act a bit like detectives and need all the clues to get the right culprit. (I can understand why you didn’t though - it’s hard to know what’s best when you’re in there!) You could wait till you see him next, but you could also send a letter saying that it occurred to you that it might be of interest that…(briefly explain those historical events) and sorry you didn’t mention these at the time. You can address it to the consultant at the hospital you see him at and it will go in your file. That way he should read it along with your scan results before he sees you again (but be prepared for him not to have and to have!). Karen x

Another option if you’re worried about sounding hypochondriac and now coming up with all kinds of things is to say in your letter your family member mother/brother whoever reminded you of a few othe issues you’d had growing up that you’d forgotten to mention.

Reemz

X

I don’t think anything’s hypochondria if it really happened, and there would be evidence on file!

So yes, illnesses in the past are relevant, even if they appeared to get better. I had also been tested for RA. And been off work a long time with “depression”. I now think certainly the pain that led to me being tested for RA, and very likely the “depression” too were signs I was already ill. I’m sure, now, that the depression was that at all, but may have been longstanding, undiagnosed MS fatigue. I find it hard to tell the difference, as all I know is I felt totally unmotivated and reluctant/unable to do anything - which is exactly how it feels with severe fatigue, in fact. Plus a lot of people with MS get depression anyway. So all in all, I don’t think it was a coincidence. I reckon I’d been ill for years. Depression may have been one hallmark of it, but it wasn’t the root cause of everything.

Report anything suspicious that has happened. I even had a lot of unexplained minor injuries I didn’t think were important, but now think unusual susceptability to injury was an early sign my muscle tone wasn’t right.

Tina

Sorry - meant to write I was NOT sure it was depression at all. And I’m meant to be studying to be a proofreader. Don’t think it’s going to work out, somehow…

I’m a total novice & I have no medical qualifications. However, I went through 9 very frustrating years before MS was diagnosed.

I do wonder if I’d have stated the minimum of symptoms at my visits to the gp/consultant, whether it would have led to earlier MRI scan and MS diagnosis.

Of course you don’t know what to do for the best, we rely upon the professionals. I may have clouded the judgement of my gp and the various consultants because I went into too much detail and history.

Sept 2004: First consultant was a Neuro Psychologist re early dementia (I was 52). He discharged me.

2nd Consultant was a Rheumatologist - he diagnosed Fibromyalgia.

3rd Consultant was a Urologist - I had surgery of a TVT operation for stress incontinence.

4th Consultant was a Stroke Specialist - he arranged an MRI plus a comprehensive range of other tests.

5th Consultant was a Neurologist - based on the earler MRI results. MS was diagnosed.

The scans & tests you will have will be the best evidence for diagnosis.

Good luck

Thank you so much for your comments and advice, I think writing a letter to see him an excellent idea and I will do it in the way you recommend too, thanks again. Something I won’t mention thou but I would be interested in your thoughts . When I had ME (22yrs at the time in 1987-8) my mum took me to see a retired professor ( ms specialist we recall) in Coventry he was doing research you needed a dr’s referral to, see him. He did neuro like examination and took blood test. Now he sent a letter back to my gp saying I had lesions in the or( of the )blood, my gp was not happy she said that wasn’t possible and wrote to him the next I knew she asked me to come and see her and to bring my husband. She told him I was very poorly and she recommend he finish work to help me back to health and she would write the necessary letters for the benefits we would need(still got that letter) we were young, questioned nothing, did what she said, 10 months later I was a lot better hubby went back to work not long after started our family. Has anyone heard of spinning the blood to,reveal anything. I always thought this was weird and it must be in my notes somewhere. Not that I think it has a bearing on what’s happening now but wondering if anyone could shed any light on it? That’s if you haven’t got bored reading!!!

“or( of the )blood”

Sorry, I don’t understand that bit.

I’ve never heard of any way of telling if someone has lesions from blood work, but you certainly can from a clinical exam - maybe the two were confused somewhere in translation?

Kx

Morning Karen we were both awake late last night! I don’t understand that bit either!! I’ve never understood what went on back then, all a bit of a blur. I was just wondering if anyone had heard of it before. I know your very knowledgable on these things and I’m sure you would have come across it if there was such a thing as leisons of the blood ( it doesn’t make sense does it) I would just like to say how helpful you are I have learnt a lot from your comments on other people’s threads you give a lot of your time to help others make sense f it all. Thanks

Morning!

I do seem to recall at least one other person on these forums claiming to have been diagnosed by a blood test, but I was always baffled by that, and assumed their belief to be the result of some sort of misunderstanding. I now wonder if they were seen by this same professor?

If someone was purporting to be able to diagnose MS by means of a blood test back in the 80s, their diagnosis would be, at best, highly questionable today, because it certainly wouldn’t conform to modern diagnostic criteria, and it’s not been scientifically verified it’s even possible.

I know a team of Israeli researchers were (presumably still are) working on a test that could find predictive markers in the blood years before any symptoms started to show, so I wouldn’t dismiss it as totally impossible, but it’s still experimental today, and not approved as a diagnostic tool, so it seems unlikely a similar technology would have been around - let alone reliable - 25 years ago.

One of the problems with the Israeli study is because it concentrates on the period before any symptoms have become apparent, - in other words, before the person is aware of any problem - they’d be very unlikely to get tested, unless there was a programme of mass public screening. Israel did, in effect, have that, because they have compulsory military service, and everyone had routine blood tests prior to conscription. This meant they had a particularly large collection of blood tests, so they could look back at people who later went on to develop MS, and see if there was anything about their blood tests that had distinguished them from their peers. It seems it turns out there was!

But in a country that doesn’t already have mandatory health screening for military purposes, it would be prohibitively expensive to mass-test healthy people for signs they might go on to develop MS. There would also be ethical problems, because unless you can do anything about it, should you tell them, or not? If it might be some 20 years before the disease materialised, would it be any advantage to know, or would it just blight their lives for 20 years, waiting for it to start?

Sorry, I’ve rambled on a bit now, but I do think this is really interesting.

Tina

Hi Tina, that is interesting. All I remember is that he was connected to the university there. I understood at the time that he had retired but had been an ms researcher. when ME was on the increase he came out of retirement to do more research. I know I can find out his name and more info if I go to a person who also went he keeps all details on everything! I will let you know if I find out anything interesting even if a bit bizarre . Jo