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Progressive MS but Consultant / Nurses can't make up their minds

I was diagnosed with MS in Dec’20 with confirmation coming Feb-Apr. 58yo man. Previously very sporty. Main manifestation is numbness / loss of motor control in left leg plus lower back pain.

Having been mis-diagnosed with spinal stenosis for 9 years, it’s pretty clear by the manner of my decline since mid’16 that I have Progressive MS. However, I had perhaps 5 individual episodes prior to that. The earliest was in 2003! I say “episodes” because they were isolated, single events, years apart and I was fine the following day in each case. So not the typical characteristic for RRMS.

Trouble is, the Consultant and Nurses don’t know what to do next. If I’m PPMS and the earlier episodes were unconnected, then there’s one possible treatment. If they ARE connected and it’s SPMS, then it’s a different treatment altogether.

Their treatment plan is “Wait and See”. Bugger that! In 5 years I’ve gone from doing 3-4 Bootcamps a week to having a blue badge, walking stick and EDSS 6.0. I’ve switched to an auto car and closed my company and stopped work. I can’t afford to wait!

So my question is: How do I provoke the so-called specialists into action? Is there a test that differentiates SPMS / PPMS? Anyone had a similar experience?

WOW - I don’t know the answer but I can say if it were me I’d ask for a case conference and let them know what I was feeling and, after everything that has happened over the yeas, the sacrifices + losses, I want an agreed action plan and an agreed diagnosis. I don’t know if PALS could offer advice but for me it would be a stop, review, action plans + review date of that action plan by December

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Hi GCCK,

Were I in your position, I think I’d ask to be referred to another neuro for a second opinion. I don’t see how they could refuse really.
All the best,

Ben

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its similar isnt it but PPMS is a stand alone disease. You have always got PPMS. you dont have RRMS then slide slowly into SPMS. SO you would have been diagnosed as RRMS. I did have kind of issues like 2000 blind, 2004, off sick couldnt walk had massive UTI, 2006 couldnt get out of bed my legs had gone, then my journey. Over that time i have had several attacks of Optical neuritis, but my mobility overall has been slow to progress, i dont have peaks and troughs as such. I call my worsening the EYE OF THE STORM, as suddenly i will feel really well, then maybe 2 minutes later feel like poop or a few days if i am lucky, but i have never had days off down and out. Just odd things.

I have PPMS. Over time it has slowly progressed.

YOU need to see your neurologist and ask about Ocrevus I believe they use this for both.

It would mean MRI etc to see where your MS is.

BUT see a neurologist or ask your MS nurse to make you an appointment. xxx

Hi I too am 5 year’s since my diagnosis of ppms. I find the non committal of the professionals somewhat frustrating… Best of luck a ppmser edss 8…

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Hi GCCK, i have the same feeling as you about treatment options. It seems that in either primary or secondary there are limited treatments available. And waiting to find out how much deterioration has occurred is not very helpful. The only true treatment is to stop or reverse the autoimmune response. Treating legs cramps with Baclofen helps with discomfort is fine but is not a treatment. What symptoms do you have? You mention numbness in left leg? And was your diagnosis from an MRI scan showing lesions? What about gradual loss of power in your legs while walking? I.e. you feel OK but after walking a distance your legs start to feel less strong? I am interested in a more thorough investigation into the actual symptoms and would like to compare mine if that ok.

Hi AVK
Yes treatments for both types of Progressive MS appear to be limited - and expensive… I wonder to what extent treatment is restricted due to lack of resources or the pharma cost?

My situation properly defined itself about 5 years ago and has most definitely been progressive ever since. Progressive? One might say logarithmic! 5 years ago I was doing 3-4 boot-camps a week, could run and walk 5 miles then it seemed as if my back gave way and I decided I needed to rest properly. It was sudden - I’ve never been able to go back. Tried Yoga with reasonable success as it maintained flexibility, but now the flexibility is fleeting and I can’t manage standing yoga, just mat work. Have put on a massive amount of weight: from a fit 89kg to an obese 125kg. The weight doesn’t help but I was lighter & fitter when everything ground to a halt, so whilst there have been secondary effects from the weight gain, I don’t tolerate being fobbed off with that being a primary cause.

For 10 years I’ve been erroneously treated for lumbar spinal stenosis (LSS) - an osteo-arthritic constricting of the spinal column causing numbness and pain. In fairness to the GP’s and consultants, my symptoms at that time were textbook, but wasn’t checked with MRI. Notably LSS is an operable condition, albeit progressive. With MS there’s no cure and now is as good as it gets…

It took an osteopath, not the massed brains of GP’s, Consultant Neurologists & Neurosurgeons, to query whether I’d had a head scan and that was Aug’20. So much time lost, so much progression :frowning_face: The resultant MRI showed lesions and evidence of demyelination

Apart from the stiffness and lower back pain my left leg goes numb with walking. And swimming actually, so it’s not weight or impact related. Left leg goes numb and drags, foot drops so walking requires concentration, balance is poor. The distance walkable has been shortening all the time and I’m down to about 50m solo, further with a stick but after that sort of distance, a sit down will enable a partial recharge until the sits are much longer than the walks.

Like you, I’ve been prescribed baclofen for cramps/ spasms but not happy with more than 20mg/ day and often 10mg. Tried gabapentin but not sure that was doing any good and I couldn’t tolerate a normal does. Have issues with bladder / prostate and possibly bowels & swallowing coming along but still have upper body strength, eyes & brain seem to be working fine. It’s all about the pain in lower back, hips and the numbness / loss of motor control in the left leg. Right leg is fine so I can still drive but chose to go auto 2 years ago.

And tonight I ordered an electric folding wheelchair!

Yes, it would be good to compare notes :+1:t3:

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Ding dong * loody hell a round of applause for not being fobbed off. MS two innocuous letters so much destruction…
A struggling ppmser what’s it all about? Unique and complex wait and see
It may help or it may not.
We don’t know… Really !!
I don’t want to be drugged to cope with incedious condion
I would like to be me in a limited way
Any non drowsy neuropathic pain meds currently taking pregabalin - weight gain a side effect? Loved reading your post thanks x

Hi GCCK,
Thanks for your reply. Its rubbish for you that it took so much time to get an accurate diagnosis. It seems that the presence of lesions is the diagnosis and an MRI scan is the only method to detect them. I have only recently been diagnosed. Do you have any recollections about the first symptoms you experienced? Could you walk OK for a distance before feeling strength dissipate in you left leg? What did/do you feel as you try to walk? What symptoms do you take Baclofen for? Do you have any thoughts as to when or why your autoimmune system started to attack the myelin?
Regards ……… Tony