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Answer to question please

I’ve just been thinking about research/trials. I was diagnosed last year but neuro said I’ve probably had the lesions on my brain for at least 20 years. So, am I classed as being in the early stages of having MS? or is what I’m thinking, that I’ve just gone undiagnosed

Noreen xx

Hi Noreen, probably just gone undiagnosed.

Just typed an answer to another question, I’ve had symptoms since 1989 but diagnosed 1998.

Was diagnosed with benign - very few symptoms but now I’ve got SPMS.

Jen x

Hi

I got diagnosed 4 years ago, and my wife paid for my last 10 year medical records interesting what I had been treated for over them years, Neuro said similiar I had just gone un diagnosed.

Good Luck

Garry

Thanks Jen and Garry, thought as much. I just doubt myself sometimes…get’s so confusing.

xx

Hi Noreen, I think how long we’ve “really” had it is something that can never be known. I’d been referred to Rheumatology for abortive investigations at least four years before diagnosis, and since diagnosis, have come to the realisation I was feeling poorly/had unexplained “incidents” years before that, even. This is not entirely subject to unreliable memory, as I’m a prolific writer (you may have noticed) and have increasingly found diaries or correspondence stretching back years (Gmail never throws anything away!) suggesting I was feeling “odd”, had pain, or believed there might be something wrong with me. In his summary of my latest consultation, my neuro conceded this might have up to a 24-YEAR history. However, I’m not sure all this speculation is relevant when it comes to eligibility for trials. If you’ve only recently been diagnosed, AND your current state of health is consistent with the disease not yet being very advanced (e.g. not yet severely disabled, or deemed SPMS), could they deny you participation on the basis of a mere unprovable theory you’ve had it decades longer? Besides, I’m assuming they do actually want/need subjects for trials. If they ruled out any case where there’s reasonable suspicion the person might have had it much longer than their diagnosis indicates, would there be anyone left to choose from? Surely, the only fair and reasonably scientific way of doing it would be to look at (a) date of diagnosis, and (b) current degree of progression? Anything else is pure guesswork - and you can’t do science on guessing - only on what you know to be the case. I wouldn’t write yourself off as a candidate for “early stage” trials, if you are only recently diagnosed, and didn’t have particularly glaring symtoms earlier. On what is your neuro basing his theory? As I understand it MRI is unable to date lesions (beyond active versus inactive) so he can’t be basing it on that. Like mine, he must be basing it on what is in your medical file, or what you yourself have been able to tell him about what you can recall from years ago. Tina x

I tried to get my neuro report from Addenbrookes hospital from approx 33 years ago…no MRI then.

Had lots of electrodes on head, arms legs etc and other tests plus consultant exam and also history taken but I was never actually told to my face I had MS…what happened was that Addenbrookes being a teaching hospital there were about 6 students with my consultant. After all my tests and the examination and neuro specific tests they all went out of the room and discussed the findings.

The walls were paper thin as they had made 2 exam cubicles from every 1 and I could hear everything.

The consultant questioned the students and eventually asked if anyone had thought of MS

He then told them that was his dx. I also clearly heard him say it was not his policy to advise patients of dx at that stage otherwise they would all go away and wait for a wheelchair !

I never saw a nuero again and after a few years everyone thought it had been wrong dx

I would like to find out exactly what the report to my then gp said but have been told those records are too old ?

Anyone know if that is true…

Thanks for your reply Tina

Yes, I have noticed your a prolific writer but always interesting and informative

Truth is, I was reading an article about research on statins and it just set me off thinking…which can be dangerous for me.

My neuro based it on what I told him and my medical history.

Noreen xx

Hi Noreen,

I’d say undiagnosed… I had my 1st MRI back in 2006 with similar issues as what i have now… It’s amazing to look back over all those years i had pains in my legs and the Dr stated it was growing pains?? everythin makes sence now…

I often wonder too, when did it happen, what triggered it and could i have done anything t prevent it from happening??

What are your thougts?

Carl xx

Hi Noreen,

I’d say undiagnosed… I had my 1st MRI back in 2006 with similar issues as what i have now… It’s amazing to look back over all those years i had pains in my legs and the Dr stated it was growing pains?? everythin makes sence now…

I often wonder too, when did it happen, what triggered it and could i have done anything t prevent it from happening??

What are your thougts?

Carl xx

Hello Carl

No, you couldn’t have done anything to prevent it so no point mulling over that one…I must practice what I preach…I must practice what I preach…

To be honest I don’t normally spend much time thinking about my own MS, I think I’m just having a blip this week. I’ve just had a chocolate flake and that’s helping

Noreen xx

You practice to preach… :slight_smile:

I’ll practice to re-read what i write to correct missing letters!

Hope that your ok… glad your choc rush is helping! :smiley:

Carl xx

Hello anon

You simply put your request in writing to Addenbrookes if that’s where the records are, stating reasons why you wish to see them. If it’s too late, at least you will have found out for yourself but I don’t see why they wouldn’t still have copies. Have you spoke to your present gp about this matter? they should have copies from all your previous gp’s.

Good luck xx