About six months ago my mobility was very poor and my GP prescribed a two week course of omeprazole 20 mg steroids. They took effect almost immediately and were like a cure ! Fatigue, spasticity, mobility all improved dramatically. When I finished the course I deteriorated rapidly and had a bad couple of days before I recovered to almost steroid ‘cure’ level. During the past couple of months I’ve gone downhill again and my mobility has suffered.
I’m considered to be primary progressive, although that’s not a diagnoses but my assumption. I’m 59 and was initially diagnosed 8 years ago. I haven’t seen a neurologist for about 5 years.
Is there anything I can do or take to maintain the steroid benefits ?
All that steroids do is to speed up recovery after a relapse. You will still be as bad as the relapse made you.
But, if you are PPMS, you should not be having a relapse - if you do, then you should be considered as RRMS.
You sound as if you need to see a Neurologist as soon as you can - might even be best to contact an MS nurse to get reconsidered fast.
i was just clarifying for my own head! i still dunno how to extend benefits tho i understand they only have a halflife of 4hrs…
i know how frustrating this malarkey can be! have u thought re meditation as well as medicine? i find this of great benefit to keep the mind strong even tho body is falling apart.
I recommend getting physiotherapy, as they’ll be able to help build on the strength you have. Whenever I go it always improves my balance & walking. Ask your neuro to refer to one who specialises in neurological conditions, as they’ll have more of an understanding of how we work than typical physios.
Dan I have an hour of physiotherapy every week at the Korean Physiotherapy Clinic, who specialise in ms. Not helping, so far. Dr Geoff If I see a neuro and he decides that I am RR , what difference would that make ? Is there something he could do or give me that would maintain the steroid benefit ?
Well, John, the big thing about a Dx of RRMS is that there are simply more treatments available for RRMS (in fact you really need to be RRMS to qualify for most DMDs)
If it was actually predsnisolone you were given, a 20md/day is a touch on the low side. The normal course for a relapse is 500mg/day for 5 days (plus the daily omeprazole for two weeks). The difference between the two is a (GP/Neuro) judgement on how bad an attack of inflamation you had. If it was inflamation affecting your nervous system, it should have been Neuro prescribed.
If a small dose had a big effect on you, then you really need to see a Neuro to be quite sure just what your condition really is. The way you have described the effect of steroids does suggest that you do not have PPMS, but you do need to make sure just what is really causing your condition before you look for a “magic” treatment that may not really exist.
Now …
Do I not remember the Korean Physiotherapy Clinic looking for “volunteers” for research earlier this year - and several people did not think much of research volunteers being asked to pay to take part in “research”.
For MS, you really need a properly qualified Neuro-Physiotherapist.
Of course, there is the MS Therapy Centre in Edinborough, why not give them a try.
Thanks for your advice. My steoids were prescribed privately by a doctor that runs an ms clinic. I spoke to him last night and he thinks I may well be RR and should see a neurologist.
He also advised that steroids act by reducing inflamation and that there is a lot I can do with diet to help. Anyway, I’ll make an appointment with the neuro that I saw 5 years ago!
With regard to physiotherapy, I’m not part of the trial, but I now know the clinic quite well. It’s very small and not in the least ‘money grabbing’. I don’t think they could finance a meaningful trial. I live in Glasgow and the therapist comes to Glasgow to treat me. Otherwise, I’d have been happy to be part of the trial.