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MS specialist says I'm too old for MS

Hi,

I saw the MS specialist end of June, I kept a record of my symptoms for the time the flare up lasted which was about 8 weeks. He didn’t think it was MS he said there would be flare up then nothing for a long time, so my symptoms weren’t presenting in an MS way?! He then said at 51 I was really too old to be diagnosed with MS.

He showed my MRI brain images which had many lesions again said that they were not MS lesions except one in particular, so ordered a lumbar puncture, neck MRI and evoked potential testing. Had the MRI and LP last week.

He said that it could be blood vessel disease/vasculitis that would mimick MS and was 60/40 against it being MS. Anyway I ended up in hospital two weeks ago as my right side face to foot went numb over a period of a couple of hours, to the point where the pins/needles turned to completely numb. Whilst in hospital the neurologist asked what I wanted out of the process of tests which sent me in a downward spiral of tears and frustration. Clearly I want to know what it is and something to help manage the symptoms. I was given noritryptaline 10mg and I discharged myself due to feeling like I was being a nuisance and not believed. He did say that as I’m getting older (51) things do go wrong and my MRI is typical of others my age.

I didn’t have the will to go through what’s been happening over last 12 months and the flare ups I’ve had of neurological symptoms which have affected my daily life tenfold.

Im still off work, my work expect a diagnosis, me to be medicated and back as soon as possible to tick the right box for them. The pressure of worrying about what the heck is wrong along with does anyone actually believe me and worrying about work doesn’t help at all.

I suppose I’ve needed to have a bit of a rant but it’s so frustrating and I have learned patience but my patience doesn’t extend to being told its my age!! The evidence is there…

Lou :frowning:

Hello Lou,

If it is any consolation, I was diagnosed with relapsing MS in February this year. Being a 59 year old male, I certainly don’t fit the usually accepted profile of the newly diagnosed as being a young woman in her twenties! Perhaps asking for a second opinion, would at least put your mind at rest.

Hello Lou

Your ‘MS specialist’ is talking nonsense. You can be diagnosed with MS from any age to any age. Try telling some poor sod diagnosed at age 17 that they’re too young, and you’ll soon find out, MS is no respecter of age.

In addition to which, for all this neurologist knows, you’ve had MS for years and not known it.

Are you certain this doctor is an MS specialist? And not a neurologist who perhaps specialises in some other area?

Have a look at this piece of research https://www.mstrust.org.uk/research/research-updates/update131014-can-ms-begin-over-fifties It shows very clearly that whilst not as common as people in their 20s and 30s, it is entirely reasonable to be diagnosed over the age of 50.

You have done all the right things, like keeping records of symptoms.

When do you get the results from the LP and MRI? And when is your VEP test? Once you have all the results of these, your doctor may be able to conclusively state whether or not it is MS. Only then will you feel as though you can move on with life, work and everything else.

Meanwhile, don’t apologise about needing to rant a little. You deserve to.

Sue

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That research is also interesting in relation to false negatives from LPs.

‘People in the late onset group were more likely to test negative when cerebrospinal fluid from a lumbar puncture was analysed for oligoclonal bands (23% as compared with 16%)’

MS Specialist says you are too old for MS… it sounds like they need a lesson in semantics and communication. I think that statistics might show that MS symptoms & dignosis usually happen in younger people, so it may be that your symptoms are related to something else, but there must be better ways of expressing this. You and your employer will both want hard and fast info with loads of certainties, unfortunately it does not always work out this way. I hope that whichever medical professionals you see they are able to communicate with you properly and support you as appropriate. Good luck Mick

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Dear Lou, I met a lovely man the other day who was diagnosed when he was 66. I am 48. Seek a second opinion? Very best wishes x

Thank you for all your comments, I do appreciate it, I have tried responding previously but an error message keeps coming up when I press post?!

I have the evoked potentials on 25th next Friday, I won’t get the LP/MRI results until I see the MS specialist at the end of September. He is an MS specialist, I checked it out beforehand just in case. I have read on many posts that the bedside manner of some neuros isnot always the best, I have to say he was very nice, spoke way too fast though. The neuro in the hospital when I was admitted was also very nice but I just think that they don’t always think about how their words can wound.

I had read of many people being diagnosed with MS over 50 it’s definitely not an exact science. Funnily enough when I was 31 I had many symptoms of affected gait, severe fatigue, dizziness but was put down to an under active thyroid and only had a couple of incidents since until twelve months ago when just about every symptom came at me and knocked me sideways! Excuse the pun!

I researched vasculitis as the other option presented and that’s also awful, so in my opinion the lesser of two evils would be MS?! Nobody wants anything to be wrong with them but at the moment I just want to be treated and not feel like I’m a fraud or drama queen.

I will take a look at the link and thank you for taking the time to reply.

Lou

Sue,

I have just the research in the link you provided, it is very interesting and I have taken screen shots so I can take it to my appointment in September.

Thank you for that.

Lou

I am 54 and have every symptom under the sun including lhermittes, tingling, frequent urination, weightloss, hyperacusia and more. Had a clear MRI and LP in june this year (paid by my self approx 1000£) but the symptoms persist and get worse. Right now I have a really bad back pain and have got Gabapetin prescribed. Going to have a new MRI (spinal) in september or october. (We have to wait here in Sweden even if our polticans tell us we have first class care.) Its a nightmare to have all this symptoms without a diagnosis - how to explain this back pain and fatigue at work? Our wellfaresystem dont accept people to rest from work without a proper diagnosis. I wish there was a simple test for MS - being in limboland is hell.

Dear Lou, what are evoked potentials?

I am 48 and have been diagnosed through having just one MRI, I can only imagine it was a bad MRI?

What a rocky road we are on and although we/I/you feel alone, this forum is a brilliant source of advice and strength.

Best wishes x

Hello Patience

Its a test where electrodes test what your brain is doing while you watch some loopy stuff on a screen (that’s as well as I remember it from quite a long time ago!) See https://www.mstrust.org.uk/a-z/evoked-potentials for a more sensible explanation.

Sue

Oh dear i could have wrote this. 2000 first symptom went blind. further on had head MRI i paid for like i wanted to get back to work (leaving a lot out as too tired to type, but virtually the same as you). The head MRI was full of high signal foci in the deep matter of my brain radiologist said it was down to my age as i was born in 1951. jump and leap to 2016 february, after many things and 2 positive vep tests in a sandwhich, and odd lesions on spine I was finally diagnosed with PPMS. My neuro said i was a difficult case because of my age and the way the MS was presenting itself. He actually said he had learnt more about MS with my case then all the times he had been dealing with it lol. I did see an MS so called SPECIALIST who said it wasnt MS but M.E. My other neuro had already dismissed M.E. i SAW another MS so called specialist (i had paid for both of these as private appointments), and he said he thought I had function disorder but couldnt say for certain as he didnt have my NOTES or RESULTS lol. In 2 weeks i got a letter back off him with a refund, he said he got my notes, and he couldnt diangose me with functional disorder and hoped i kept seeing my neuro and if i needed anything to contact him lol.

I must have been your age i suppose no a bit older when i had my first MRI.

My advise is this. I decided to myself if its MS it will show itself, and finally it did on the second VEP again it was positive for ON.

I know how frustrated you are i really do. I even paid to see Dr Munro at breakspeare clinic to see if it was something else. She actually said to me way back then she diagnosed me with a differential diagoses of MS and a co infection of lymes. she was spot on both times.

So dont give up, but dont stress about it. My neuro agreed to support me and said I had a neurological disease still under investigation i have to say he was great, but i got more out of him when i saw him privately. He did support me and we stayed friendly all through my illness and he supported my application for PIP. He said the issues are that unless i present the way they are told i.e. McDonald criteria they cant give us a diagnosis, but they can skirt around it, finally with the test results etc, he was able to give me the diagnosis.

stay strong you will get there in the end. Obviously lots happened to me but i am really too tired now to write it all down, even my GP when i saw her after the letter came with my diagnosis HUGGED me i kid you not she has retired now. she felt my frustration.

I felt vindicated. xxxxxxxxxxxx

Crazy chick, thank you for adding to this post. I am in my sixties and also in limbo land at the moment. Looking back I am sure I have had ms for a number of years. But I think being older does go against getting a diagnosis. God loves a trier and I am definitely trying and will not give up.

Marjie x

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Hi, 52 and diagnosed ppms earlier this year, consultant did say though that there was every possibility that I’d had ms for the last 20 years.

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