How long to get meds right?

I was diagnosed with ppms a year ago. The only problem I have is stiff legs, especially my knees. No numbness, tingling, fatigue etc that I read about on here. My issue is that my consultant is unable to find the right meds/dosage for me.
Too little baclofen has no effect yet too much and I’m in bed unresponsive. The same happens with Gabapentin and Tizanidine. (Luckily I was in hospital when I was unresponsive in bed!).
How long did it take you to find the correct meds etc?

If you can afford it (£50/session typically), get massaged. Ideally by an osteopath or chiropractor rather than a physio or sports masseur. My osteo specialises in age-related and degenerative conditions and she keeps me loose enough that I can attempt other exercise.

There really is no substitute for exercise and pushing your body as far as you are able as long as you are able. Not endurance work but flexibility and strength exercises.

Personal experience: 2 bouts of cellulitis in 4 months caused me high temperature, fatigue and loss of mobility but it would be easy for me to accept my current condition as the new normal. I don’t! Need to push myself into stretching and strength work as I see my future involving more transferring between places and less actual walking. I still have upper body mobility so need to work on arms, shoulders & neck to ease lifting myself because the decline in my legs is beyond my control. That said, time spent on stretching and posture does improve my walking - for the time being.

Not a direct answer to your question but non-pharma body optimisation can be an easy win.


Thank you for your reply. You sound similar to me. My upper body strength is fine and like you I’ve been doing lots of stretching, flexibility etc exercises (I sometimes get told off for doing too much!). It’s my consultant saying I would be even better if he could get my meds right!

Ask to be referred for SATIVEX. its for PPMS i have just received it myself but due to circumstances not started it yet, but there are favorable reports of its effectiveness.

ALSO if your new to PPMS surprised your doctor doesnt start you on Ocrevus. Its not pain meds but a DMD primarily to treat PPMS designed for people who have just recently been diagnosed with PPMS.

Thank you @Crazy_Chick :smiley:

I’ve just messaged my MS consultant & nurse to ask about Sativex as I can only tolerate low dosage of Baclofen and other stuff (e.g. Gabapentin) not at all.

That’s the great thing about this forum and its collective knowledge pool - I wouldn’t have looked into it without your prompt.

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I tried sativex last year and it did nothing for me! Me and medication just don’t go well together! In fact when I have a bad cold, I can’t even tolerate a Lemsip!
I was due to start ocrevus soon but recently had a uti which really affected my mobility so it’s on hold now while I tried to get walking again!

I know what you mean. I fear I’m the same with meds.

In under 2 hours, I’ve had a message back from my MS Team that they are not yet in a position to prescribe Sativex. I replied to them and attached this link: Prescribing of Sativex. It may be a local decision? We’ll see…

Had a reply re: Sativex from my MS Team:

“The decision is a local one in that pharmacy have not agreed to prescribe it here. To the best of our knowledge it is prescribed from specialist rehab clinics (as it says in the document you attached to your email). We don’t have a specialist spasticity clinic here. You would need to have failed to respond to two anti-spasmodics first to meet criteria.”

So it’s not a straightforward thing, it would seem.

I hope you don’t mind my asking your age. For some reason I assumed those over 50 would be diagnosed with PPMS. At 73 I have thought when finally diagnosed would be told I have PPMS as well assuming I do have MS. Did it take you a long time to be diagnosed and what made you see a neurologist in the first place? thanksxx

I’m 47. I was diagnosed last August. I am a teacher and at the beginning of 2021 kept going to the dr with stiff knees and awkward walking. The dr said it was my age!!
At the beginning of August last year my mobility worsened dramatically and my dr told me to go to A&E. I was admitted to a neuro ward for five weeks and was told of my diagnosis of ppms then.

Isn’t that shocking? 40 to me is very young. He must be an idiot.

He told me to take paracetamol every four hours and I would be fine!

Today I woke up so dizzy I couldn’t walk. Nowhere to turn. Very scary and frustrating. If I go to emergency room I will wait 6 hours and then get sent home. Our system in America is so broken.