dmbart 09/01/18
Last reply 6 months ago
PPMS on back burner

Hi all. I have PPMS in Uk and recently asked my MS Nurse to arrange a review with my neurologist. I was told that people with PPMS are put on the ‘back burner’ by the neurologists. She said it was because not a lot can be done with PPMS sufferers and fewer people have it.
I was offered an appointment with her for about 3 months later.
She asked if there was any change in my symptoms. I said I had the same symptoms but sometimes they were worse than I had before. Fatigue, balance etc etc.
Has anybody else had a similar response with PPMS.
Bacically I feel I have been told to deal with it myself.

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edmontonalberta
6 months ago

@dmbart

Thank you for a good laugh; I almost spit my coffee onto the computer screen.

What you wrote is exactly how I being treated (in Canada). Nothing we can do; no drugs or anything to help… Go away – we will set up another appointment 6 months down the road so government paychecks keep flowing to the doctors.

The good news is that knowing this; I am at peace with my situation. I am just living my life as normal as possible; having fun along the way…


stumbler
6 months ago

@dmbart , unfortunately, there is no MS drug for Progressive variants of MS.

We can only request relief from symptoms and the MS Nurse can handle symptom management.


mermaidia11
6 months ago

Action. Distraction and excercise helps..but yea in uk you are left to get in with it, unless you want to carry on using precious energy running backwards and forwards to the neuro. Gabapentin, pregablin, baclofen is their mantra, but if you don’t want to spend the rest of your life alive, but in a medically induced coma; that ain’t an option
I’m pleased with the results of LDN and feel a bit better for it

Perhaps the powers that be should set up a subsidiary SP/PP site for all us lot on the scrap heap, trying to make our peace with it all, and tryin not to depress anyone. When it gets worse it’s rubbish – having a plan A,B and ‘shit hits the fan plan’ helps as well!
Staying positive is an oxymoron, but I find healing guided meditation helps, as does a good belly laugh✨👌💕🌈🧚🏻‍♀️
Google the ldn documentary as well – it makes more sense than taking expensive chemo in my book


kinga
6 months ago

I thought Ocrevus was approved for PPMS?


stumbler
6 months ago

@kinga , I’m afraid Ocrevus hasn’t yet been assessed by NICE for use on the NHS in the UK.

This decision is due “towards the end of 2018”, but it may be restricted to specific RRMS cases and “early active PPMS”. 😕


kinga
6 months ago

eghh that sucks than


dmbart
6 months ago

Thanks for responses. I am so glad I managed to cheer somebody up.
It seems that having PPMS is a global problem I.e. Edmontonalberta in Canada.
I think I will just enjoy my life as it is and just annoy my ms nurse to cheer me up.
I am taking modafinil, gabapentin and a low dose of venlafaxine.
I have decided I do not have MS and will just laugh when things go wrong.
Thanks again for taking time to talk to little ‘o me’.
I hope everybody copes well.

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