I’m diagnosed primary progressive. I was able to walk about fifty yards with a rollator until six months ago when I deteriorated to only being able to take four or five steps before having to sit down. Saw neuro in February who ordered an MRI with contrast.of my brain. He said I had no active lesions or inflamation. He said the DMDs act on inflammation and therefore wouldn’t help me. He asked me what my worst symptom was. I told him fatigue so he prescribed modafinil. Didn’t help. I spoke to my GP last week and told him how bad my fatigue , and therefore mobility, was. He said he didn’t know much about ms but suggested I tried a course of steroids . He prescribed 14 days of Prednisolone 50 mg. I’m on day five. Walked out 20 yards to my car ( with rollator ) and back again! First time ‘walking’ for weeks ! I’ve just walked from room to room using my stick. So, my question is, being primary progressive , why are the steroids so amazing ?
are you still on fampyra?, are they working together
Do you find yourself doubting your dx ? I have never read EXACTLY WHY steriods and DMDs dont work in PPMS yet do in RRMS. DMDs act on the immune system and not inflammation itself (steriods work on inflammation). In PPMS is the immune system working in a diiferent way to RRMS which is why the DMDs dont work for PPMS ?
I have been DX with radiation damage from treatment had in 1990. Although 2 further neuros have said that is impossible and said MS was more likely a culprit, but due to negative LP an insufficient evidence on MRI I couldnt be DX with MS. I have decided to go with the first guy asat least he came up with something to target on. He basically said that the cells in the spinal cord were damaged in 1990 and that coupled with natural aging (50 this year!) has caused them to reach their shelf life sooner then the cells that were not damaged. I think this makes sense but when I mentioned what I had been told to the sceptic neuros they kind of raised their eyebrows!
What I am trying to say is that neurology is a minefield! Some people think that PPMS is actually SPMS after a fairly benign course of RRMS. There was an interesting article I read on the Barts MS Blog.
I think i have PPMS, will find out after LP i have had ongoing symptoms for a year and half and if steriods will help me walk again i will take them, after 6 months walking got that bad i couldn’t take my daughter to school so my dad does i would rather have relapses then be how i am i am only 34 and feel like 60 some days.
I always find my waterworks are so much better on steroids everything returns to normal then a few days after steroids it’s back to having to try to pee. I’ve had 2 masses relapses which there was some recovery but other things happening in between. My neuro great and has saw me 4 times since sept. My doc got me to ask if she was sure I was rrms as everything was deteriorating so fast but she said def rrms as there had been recovery from the relapses I’m not convinced they really know about ms and a lot is guess woek X
My understanding is the steroids help to calm the inflamation associated with the MS attack thus enabling the damaged
nerve fibres (where the myelin has been stripped) to at least start conducting the correct signals more easily.
Hope this helps.
Just another thought!
My understanding of DMDs (Diseas Modifying Drugs) is they act on the immune sytem to stop it attacking the myelin in
the first place.
Which is why people on DMDs have to so carefull about infections as they have a suppressed imune system.
Maybe you miss understood your Neuro at the time?
i have PPMS no drugs work for me except the steroids and LDN which after 8 years is still keeping my fatigue in check. I recover from it quicker when i am on LDN , steroids are good but can only be taken for a short time