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Can I really have had it for forty years?

Hello all. I’ve just had a niggling symptom that I used to have forty years ago. It just struck me that this must be an MS symptom although I was only dxd as RRMS just over three years ago.I’ll be seeing my neuro this week following a new MRI a couple of weeks ago, probably to be told that it’s now SPMS.

The neuros thought that I’ve had MS for twenty years but I’m now thinking that it maybe goes back even further?

Is this even possible?

Anyone else?

Thanks

Hello Lou

Maybe it depends what the niggling symptom is. And it is probably a question you should be asking your neurologist when you see him/her.

I’m sure that many people have had MS for way longer than it was first thought. So it’s certainly possible that your MS goes further back in time than you’ve recognised so far.

With me, I absolutely know when I had my first symptom. I remember asking people I worked with if having a numb finger was something they’d see a doctor about. And I remember when it was, partly because it was in my first couple of months into a new job, and also, it coincided with my 30th birthday.

Btw, I wouldn’t be too quick to get your neurologist to say that your MS is SP. Unless the neurologist is absolutely certain, they can keep calling it RR, which means you qualify for DMDs. (Assuming you are taking a DMD that is.) And you could still be RR, just with long gaps between relapses.

It is very tempting to start thinking you are SP. Many of us (me included) thought I had become progressive long before I actually was. Then had an absolute humdinger of a relapse. So in my opinion, the longer you are classed as RR and continue to take DMDs, the better. Unless there is clear evidence of progression and an end to relapses. Don’t forget that some people are progressive but continue to have relapses as well.

Sue

My symptoms go back 30 years if not a little longer. I can very easily recall tingling sensations in my feet, altered sensations in both hands and bouts of poor balance. The altered sensations in my hands have always been with me but I’ve ignored them. It wasn’t until I was diagnosed 4 years ago when other added symptoms such as loss of movement in my left leg and hence being tested for MS, that the neuro said the past symptoms I’ve experienced from years ago were probably the MS ticking away quietly under the surface, which I do believe is correct because those same old symptoms are for more noticeable now since the MS has properly shown it’s ugly face.

Thanks as ever to Ssssue and jactac! The (new and excellent) neuro said to me at my first appointment back in August that it was very likely that I’d become SPMS, and he then had a look at my previous two MRI’s and there were no new lesions on them (i.e.just the old ones) so if there’s still no new ones this time I expect he’ll call it SPMS. He said that if this was the case then there’s no point continuing with Tecfidera but in fact I stopped taking it two weeks ago. The side effects - gastric disturbance and painful flushes - had come back but much worse for some reason. Either way I’m not going back on it!

The symptom which has suddenly recurred is a kind of numbness, tingling and discomfort in my lady bits (for want of a better expression). I have fantastic treatment for chronic UTI so don’t think it’s that. Forty years ago the gynae said that it sounded like I had genital herpes, but don’t know if he ever did the blood test for it (I think he did) and I never had anything visible.

Anyway, I’ll put it on the list for Tuesday (which is getting longer by the minute!)

Louise

Knowing what Ive learnt since my diagnosis. I reckon on having symptoms for the last 30 - 40 years. Im 56 now. When your`e young, you just ignore it and get on with life. Even now I try to ignore it as I care for my partner full time. She has Dementia.

I know what I prefer.

First symptoms at 23yrs.

At 30yrs really noticed something wrong, started asking doctors.

At 36yrs dxd with RRMS.

Last year dxd at 56yrs with SPMS.

So 23yrs + 46yrs = 69yrs

​13 yrs to go. Approx.

This all sounds about right for me too !

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First symptoms in 1980 - at the age of 20. Had tests which didn’t prove anything conclusively, but the doctor told me I ‘probably’ had MS. (diagnostic tests were rather different back then - in the dark ages)

Forgot all about it and started with severe fatigue in 2014. Was tested for this, that and the other…none of which I had. Was diagnosed with RRMS in Feb 2016.

Now looking back I have definitely had the odd symptom over the years. But these symptoms could have been caused by any number of things. I’ve been very lucky I reckon. 34 years almost symptom free - and none the wiser. Happy days!

Same here lou62… Diagnosed at the age of 40. I am 55 now, ‘SPMSer’…, emigrated from Holland at the age of 32 which did not ‘help’… RRMS was soon changed into SPMS. I recall extreme tiredness in my teens (but eeh, do’nt all teenagers 'overstep limits and wear themselves out 'is what I thought at the time…) and a complete lack of concentration regarding studying etc.(but then I did not sleep properly either etc etc).

I certainly remember having ‘sleeping feet’ (as I used to call temporarily complete numbness in my feet) in the first half of my life, and I did have 2 or 3 more serious attacks (suddenly being complete legless for 10-15? minutes) in my ‘twenties’.

All seemed to come out when I could not walk at all anymore after a jogging session at the age of 42. I was a ‘smoker’ at the time BTW and till then I always blamed my unhealthy habits for the problems I was experiencing more and more.

However, an MRI scan followed a visit to my GP which showed lesions on my brain and the rest is history (o yeah, and I quit smoking in 2007!).

Take care, Jos.

First symptoms in 1997 when I was 33. At the time, doctor said possibly MS (if Symptoms repeat over time) or a virus (if no repeat). Nothing for the next 6 years. Woo hoo. It must have just been a virus. Then I had another attack in 2003. Oh bugger, it wasn’t a virus after all, it’s MS.

one of my main MS symptoms over the years, has been the bladder, which has been decidedly dodgy for years. However, looking back even further, I remember my bladder being somewhat unpredictable when I was a teenager and into my 20’s. Was that a first sign of MS or just a dodgy bladder. Who knows.

derek

…same here Derek, that ‘dodgy bladder’…; mainly after (many) beer(s)/alcohol intake but still it has always been weak.

Yes it is possible Lou. I was diagnosed in December 2016 but we now know that I have had relapses since 1982 when I had trigeminal neuralgia and facial palsy. My MS consultant thinks I’ve had 5 or 6 relapses since. I’m lucky that I still have RRMS and my consultant says he is surprised that I have not converted to SPMS. So there are some of us out there who have been misdiagnosed for a very long time.

I don’t drink much these days. Beer is out of the question, partly because of the bladder, partly because my body just can’t handle it any more. I do like red wine but after just one glass I start of feel the effects. After two glasses, I am well and truly flying - I’m a cheap date these days.

i also really like coffee, but have to limit my intake. One cup a day is ok. Two and the bladder start to act up. If I have three cups or more a day, I have to stay within a reasonably close range to a toilet and just the mention of “coffee” sets me off.

derek

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I look back to when I was a child, dodgy eye, ear infections, every itis going, hospitals, weak left ankle and foot, tonsils, laragitis, missing loads of stuff. Vomiting, migraines blah blah then passing out, cluster migraines, painful legs. Weird though, I always recovered very quickly from whatever was affecting me, then was on full pelt for ages until the next thing floored me. Inbetween my 5 foot 2 frame was really strong, then it would just crumple even if I got a cold. I always wondered as a kid why I missed so many things and as a teenager. Only now does it make sense.

I can trace symptoms back to when I was 16, so that’s 44 years ago. I had unexplained mystery illness’s that resolved on their own and I missed out on lots of things because I never felt up to it.

When I was diagnosed it was like the last piece of a very large jigsaw, it suddenly all made sense.

were we born with it ???

I’m pretty sure the answer to that is no. Because the neuroscientists generally suggest there are a huge number of factors involved in all autoimmune disorders including MS.

If we were born with it, then it would be a straightforward inherited condition and that’s not the case. In particular, twin studies show that isn’t the case. There is a 1 in 4 chance of the identical twins sibling of a person with MS also having it.

See https://www.mstrust.org.uk/a-z/causes-ms for the generally accepted causes of MS. Although these aren’t definitive.

Sue