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Diagnosed 2-3 years ago but still have my doubts

Hi guys hope you are all well. As the title suggests I have doubts about my diagnosis of Primary Progressive MS.

I dont get any treatment, any help, nothing at all, nothing works for me(as im living in the stone age).

Im 29 at the moment and started to experience neurological symptoms early 20s.

I know most of you will tell me “learn to accept, acceptance” so on and so forth. But I just have my doubts and dont want to accept anything im not confident in.

The way I was diagnosed cause me to be suspicious. "Its MS, Its not MS, Its MS, Its not MS, well ok we will give you diagnosis of Primary Prograssive MS because we have no clue what else it might be". Thats basically was my investigation process.

I would love to go to other countries and ask different neurologists for their opinion.

Does anyone know anyone legit and useful on the Internet, or anyone has a good experience with abroad clinic ?

you could get a second opinion from a private neuro here.

ppms is a very severe diagnosis for someone of your age.

good luck.

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Hello

You’re not likely to be told anything so silly as ‘learn to accept’ MS from us. More like bloody MS, why accept or ‘come to terms’ with such cr*ppy luck.

Carole is right, being diagnosed with PPMS so young is a bugger and fairly unusual. Saying that though, MS is a tricky git and will do what it wants, whensoever it pleases.

It’s still pretty strange to be told, ‘oh we’ll slap a progressive label on you because we don’t know what else it could be’.

I suggest you should see another neurologist. Have you seen an MS specialist? Do you know if the McDonald Criteria has been applied? Have a look at https://www.mstrust.org.uk/a-z/mcdonald-criteria for the criteria which should be followed for diagnosis with primary progressive MS. If you don’t believe it’s been applied, then go back to your neurologist and ask for a referral to a different MS specialist.

Or you could of course get a private appointment. If you can afford at least an initial consultation, try to find an MS specialist with both a private and an NHS practice. Take all of the documentation you have (ie copy letters which have been sent to your GP) and see what s/he thinks. If they think more testing is necessary, see if they will refer you back to their own NHS clinic. It’s the tests that really cost the most money, an initial appointment shouldn’t cost more than a couple of hundred pounds.

If you can’t afford it, then see either the original neurologist and ask for further testing and more of a definitive diagnosis. Or see your GP and ask for help.

And in your situation, I wouldn’t do anything so daft as to ‘accept’ such a diagnosis, arrived at by such negative methods. Neither would I choose to go abroad for a diagnosis. After all, supposing it’s not PPMS, but a different form of MS, or something altogether different, you’ll want to be able to access treatment under the NHS.

Sue

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I think you are so right; seems rather stupid and impotent to put a label of PPMS on someone so young.

I better explain my thoughts and what has been said to me. I was diagnosed MS in 1973; in them days there were no different categories; you either had MS or did not.

I was 23 years old then and knew nothing. Then in about 1990 they came out with the different categories and I diagnosed myself as PPMS. This was built around the fact I have only had one attack and I was very slowly getting worse; so slowly it was un-noticeable.

In 2015 I got an MS Nurse; whose a sweetheart and her words to me were; NO; YOU CAN’T HAVE PPMS; YOU WERE TOO YOUNG IN 1973; MUST BE SPMS.

Sorry but that assumption was wrong; I fit PPMS to a tee.

As far as you’re concerned I would suggest (if you can afford it) to go privately to Professor Giovanni at Bart’s is about best; if he takes private patients.

Good luck

George

I don’t think Professor Giovannoni has a private practice. He’s rather busy being brilliant at Barts and on research projects. He is a fabulous neurologist though. I was lucky enough to see him a long time ago. Back when I was a no nothing numptie and didn’t even realise I was seeing possibly the best MS specialist in the country!!

Idiot that I was.

If you are in, or close to, London, it’s definitely worth trying for a referral to Prof G.

I reckon you know sufficient about MS now George, to have self diagnosed correctly. But what is important about a diagnosis of PPMS today is that generally it’s not given to someone at the outset, it’s often retrospectively diagnosed after at least a couple of years of slow progression. And in someone so young, it’s very rarely diagnosed from the beginning.

There are many other excellent MS specialists though all over the country.

Sue

I have already seen another neurologist at Edinburgh Anne Rowling Clinic, she also thinks its PPMS, but thats just thoughts.

I will try to see a private neurologist, but I kinda think they all operative under the same procedures in the UK, went to same University under the British education system, share same mentality, so thats why i thought that seeing a neurologist in a different country might be beneficial.

Im not being in denial in anyway, if its PPMS let it be PPMS, but im not convinced for a number of reasons.

Thank you, i will check him out

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And btw, Prof G is South African. So qualified there. Not part of the British education system so to speak, although he has been in the U.K. for many years.

Sue

but what difference would it make if you were told by another neuro that it wasn’t ppms? You would still have the same physical issues.

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So how did it start? What tests did you have etc.

I went over 10 years waiting and waiting to find out what i had. 2000 blind blah blah for six years slowly little things crept in.

2006 I was having problems walking, stiff, pins and needles couldn’t drive my legs were weak my foot weird and in September went to get up for work monday morning, and couldn’t walk. Weird looking back as it seemed bad then, but settled down…then slowly got worse over time. Like i had a hit then was allowed a break.

Slow progression though over time. My neuro thought it was MS all along but i didn’t match the McDonald criteria for a diagnosis. I couldn’t go into hospital for I.V. steroids to help the symptoms as I wasn’t relapsing.

I virtually just got on with it, had the odd MRI, positive lesions in 3 places, vep test positive, then finally another positive vep test and i was told finally in 2016 i had progressive MS. I was never told it was PPMS he just wrote down progressive MS and i am now told that is what i have.

I am not convinced some days to be honest either. I keep being told by people you dont get optical neuritis with PPMS, but i have had at least 3 attacks maybe 4 over the years.

If you have doubts, then you need to pursue them, as you could be missing out on treatment.

there are so many mimics of MS. Lymes is a classic.

If your not sure then I agree with you, your diagnoses seems haphazard, and i thought it was pretty difficult to get a diagnosis of MS without the McDonald criteria in this country. I finally got it as i actually did fit that in the end with the last VEP and other issues.