Just a question on what combination of medication you find helps your ms. I have been put forward for lamtrada treatment, but i was just seeing if anyone has opinions on other treatment types. I have no idea about other options as i have not seen my neurologist again since official diagnosis. My worst symptoms are numbness in my legs, severe cramp in my legs, during relapses my weakness in my legs means i need to use a cane, weakness in my right arm and numbess. I have frequent relapses most of my lesions are in my spinal cord so my symptoms are quite wide spread. I don’t know if medication will help as a lot of my symptoms are constant and have been for over a year. Any opinions of experiences would be greatly appreciated. Thanks.
There is a lot of information on this website about medications.
If your symptoms have been constant I think you should ask to see the neurologist again.
I’ve found that there is a whole panoply of treatments or actions that go beyond just medication. Personally I have avoided drugs and have adjusted my life accordingly. While this may not sound very dynamic, I still have a good quality of life.
Of course there are aspects of personal circumstances which may help or hinder you.
I hope this helps.
It’s a good question, but our reaction to drugs is very personal, so for eg I can cope with quite a lot of Baclofen, whereas many people find a small does weakens their legs. So we can tell you what works for us, but your reaction to the same drugs could be dire. Then there’s the people like Steve who avoid drugs. And don’t forget to add in the fact that the duration of their MS, disease and disability progression also makes a big difference, as does the strength of muscles at the outset.
So, here’s mine. Btw, I’ve had MS for 20 years, I was RR, but am now more progressive. I’ve taken 4 different DMDs but have had bad drug reactions to most so haven’t had the benefit of relapse reduction and am therefore quite badly disabled. I’m a wheelchair user, and can only walk the tiniest bit using FES and a walker. The rest of the time I’m in my 'chair.
Baclofen for stiffness and spasms, anything from 60 to 80 mg per day
Cloneazepam for spasms, 2mg per day
Amitriptyline, for pain 40-50 mg per day
Oxybutinin, for bladder spasms 10mg per day
Zopiclone, (sleeping pill) occasional use @3.75 or 7.5 mg
plus Movicol for bowels, 1-3 sachets per day
I don’t take anything, I react very badly to drugs.
Thanks for your replies. I don’t see my neurologist till July so i was just getting some idea on other treatments as the only options i was offered was lamtrada or tysabri. I have no idea of other medications. I am aware it will have a different effect on each person but it just gives me an idea. Steve snore and Florence,do you mind my asking how you manage without medication? I’m only 26 and had ms at most 2 years and already need a stick so how do you manage the damage being done? I think if you can manage with out treatment then that’s amazing. And ssssue thank you for your experience too. That is a lot of medication. Do you find it helps? Do you still have side effects from this combination of medications? Do you think sleeping problems are part of ms? As i never mentioned that to my neurologist. Thanks.x
Some people who have had Lemtrada have experienced an improvement in symptoms, but the main aim is to stop relapses and disability progression. If they would let me have it, I would grab it with both hands. I’d already started the diet when my MRI came back no change so making me ineligible for it. Don’t think they’ve ever had anyone cry hysterically when told no new lesions before! However, there are risks and it doesn’t work for everyone, it’s just that I perceive my risk from MS to be way greater than the risk from Lemtrada. It’s a very personal choice.
Oh and my experience of other meds is that gabapentin or Pregablin help with pain and sensory symptoms and my private Neuro physio helps me manage stiffness and has improved my walking. Was told not eligible for NHS physio.