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

Primary progressive MS
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** See update at bottom of the thread. 2 years on…

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 particularly since mid’16 that I have Progressive MS: no RR characteristics and a steady decline. However, I had perhaps 5 individual episodes prior to that which have since been written off as chronic lower back pain and/or sciatica.

I say “episodes” because they were isolated, single events, years apart but they did cause some confusion for my Consultant & Nurses at first whether I was SP- or PP- MS.

If PMS and the earlier episodes were unconnected, then there’s one possible treatment. If they were connected and it’s SPMS, then it’s a different treatment altogether.

Their treatment plan was “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, 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?

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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

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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.

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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

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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

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Hi GCCK,
I too have the issue of ppms although they have never said but I know as no attacks since first onset 2001. Diagnosis 2004. Long wait from the testing then as Ppms was called back then Chronic Progressive. MS nurses keep referring me to the GP but GP says not a specialist. True, as when trying to get help the meds offered do nothing as I have had them before.
Feel like an orphan being passed around. I used to have yearly appointments to see the professor Ms specialist top man in the country then. Have not been back since 2017 as all I got was… Nothing!
So what was the point in hauling my body all that way to be told nothing.
Beats me… Frustrating totally frustrating…

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Just re-read what I wrote back in August.

I challenged my treatment plan (or lack of) and forced the MS Nurses and eventually my Consultant to review. A case conference was called and I got another MRI with contrast and yesterday, a lumbar puncture. Not the most fun I’ve ever had, it took 4 attempts to get into my spinal column and draw out some CSF. Thought it went OK but here on day 2, it’s proper painful! Hopefully the outcome of the latest MRI plus the LP will inspire the MS Team to move up a treatment plan for me. Watch this space…

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Hi Tony - and others
I’ve just re-read this thread which I created back in Aug’21 because it’s on my Profile as my “Featured Topic”. Made me take stock of my “journey” (ugh! Hate using that word in the context of an illness!).

As a result of successive MRI’s at 6-month intervals, my MS was not only confirmed as PP- but also NEIDA, often referred to as “Smouldering” (c/o Prof G). My MRI’s all look the same but my symptoms have been steadily worsening.

To Prof G and his acolytes, Smouldering MS is the “True” MS and that inflammation is the body’s reaction to the underlying condition. Hence for RR-MS and Progressive (both SP- & PP-), it is possible to treat the inflammation quite successfully and slow or even stop disease progression or relapses, but not cure the underlying cause.

I’ve spent the past year or so delving into increasingly technical and theoretical papers and theories about the mechanisms thought to be at work in our defective MS bodies. Prof G is an amazing guy and opens the door to this unfamiliar world but there’s more to learn if you are of a mind to.

  • Why is the Epstein-Barr Virus (EBV) getting so much attention?
  • Is it the trigger for MS? Or one of them?
  • What is the significance of Vitamin D and why do MS sufferers typically register lower than normal levels?
  • What are B-cells and T-cells? And why is neutralising some B-cells a good thing?

It’s doing my head in, but I wanted, no, NEEDED to know. Latest development is that I’ve got onto a clinical trial (can’t reveal details) and after screenings, tests etc. had my first session with meds administered. Since I am PPMS and NEIDA, I am ineligible for ocrelizumab under NHS/NICE guidelines but am in receipt of meds now because on a trial, the pharma foots the bill. Too soon to say if it is making a difference but it won’t be a cure, or stop progression but it might slow it down. Might. But I’ll take that, because the alternative is continued free-fall.

I’m happy now, because having got access to meds by whatever means, I now stand a chance of fighting back. It needs to be said however, that I got NO HELP from my MS team in finding or getting me onto a trial, in spite of them saying they would after it became apparent I was not eligible for ocrelizumab on the NHS. And this wasn’t the first trial applied for, having struck out (ineligibility criteria) twice before being accepted on the third.

Sorry that this thread is me, me, me, but I’m feeling upbeat for the first time in a couple of years and if I can make it happen, then maybe others can be inspired to try too. I’m keen to help anyone who wants to try, so send me a message or post a reply on here.

Graeme

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Awe Graeme

That is fantastic news.

Your post brought a tear to my eye.

Well done for all your hard work to get on a trail. I know it should not be hard work.

I have only been on this journey for a year but each step I have needed to push. Dozens of phone calls to doctors, consultants, Ms team etc.

I really hope you see some positive effects

take care

Deb

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I hate the phrase but ‘I feel your pain’. I genuinely do.
Life sucks
Mx

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Hi Graeme,
Thanks for the update. I’m pleased that you have made progress and hope the treatment makes a difference. I agree with you that knowledge of MS is a key to understanding and helps drive informed conversations. Have you watched ‘Multiple Sclerosis Etiology’ by Ninja Nerd on YouTube? I found it hugely helpful. I have also joined ECTRIMS and listen to some of their podcasts. These give a bit of an insight into the clinical side of of MS and current diagnostic thinking.
My diagnosis has remained as (Late Onset) PPMS and I have had my first infusion of Ocrevus. I have not come across the phrase ‘smouldering MS’ but I can appreciate its meaning in the context of how I feel. I will also now research the phrase. My latest quest is to see if I can get Fampridine which targets improvements in walking and strength generally which although recognised by NICE my NHS Trust do not prescribe it. I would be interested to know the treatment being used in you clinical trial.
Best Regards
Tony

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Blockquote

and yesterday, a lumbar puncture. Not the most fun I’ve ever had, it took 4 attempts to get into my spinal column and draw out some CSF.

Blockquote

Well it took 5 hours and 2 house doctors to find my spinal chord, afer an operation, the previous year, to stabalize my spinal fluid pressure.

Blockquote Have issues with bladder / prostate and possibly bowels

Blockquote
tell me about it. try phosphate enama B . it helps if you’re lying on your side in bed and administered by a district nurse or a randy wife or girlfriend, then you’ve got min 1 minute to swing your legs off the bed onto your wheelchair and onto the loo …

Blockquote
I am ineligible for ocrelizumab under NHS/NICE

Blockquote
I went for a 2nd opinion and told that my NHS doctors at my hospital had as much infomation as this hospital.
My latest neuro-consultant said after I said is there a cure?, he said," there is no cure for ppms."
Well, I must admit he was alot more miserable in attitude than me, and alot more positive than my original ms nurse, who was surprised I’d lasted soo long.

I’ve come to the conclusion that the quagmire of auto-immune diseases are a new classification that are about 50 to 60 years behind the Cancer’s classification. Ok, there is no cure at present. There is some research and as the solution to most cancers are solved then auto-immune disease solutions will increase.

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Wow Tony, 2 years since your last post! Good to hear from you, many thanks for your input I will look into your information. Glad to hear you are getting some treatment.
Take care be safe M x

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I can’t find the post but someone suggested a Ford, WAV ! Ford don’t make it any more.
Any more ideas?
Take care, love M x

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hi Graeme pleased you are getting somewhere. i was told by my neurologist i wouldnt get ocrelizumab as i had PPMS too long. i was offered sativex which didnt work out. I just get on with life now, my MS in on ABOUT 7.3. i have to use a wheelchair out, but i cant use it in as i dont have space, so restricted to recliner for most of day, but can walk a few steps with my rollator. but rest a lot. SO YOU GO FOR IT, KEEP going hun. i am 72 now not stressing over my MS anymore it is what it is. lost 3 friends now to cancer in the last 12 months younger then me.

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A lot of stuff i found out from other ms people. I was diagnosed with ppms in 2014.