Forum

PPMS

was diagnosed with PPMS in July, I have seen two specilists and was given Gabapentin by the last one, which seems to work with the feeling on my legs but I have a constant bad lower back which seems to affect my walking in that I cannot walk for a long time.Does anyone suffer from lower back pain and legs? I am seeing a professor tomorrow in the hospital whose speciality is MS. What should I ask him?

Hi Kazza, the back pain might be nerve pain caused by MS, but I think it’s also likely to be ‘secondary pain’… pain caused by the way you are walking. The specialist will hopefully be able to work out which. If it’s caused by your gait then physio can help a lot. Ask him if he can do a referral or if you need to see GP.

It’s always hard to know what to ask for PPMS because there really aren’t any drug treatments. If you have any specific concerns (your back pain being one) write them down. Try to keep your list to no more than about 5 things. That way you’ll have the chance to discuss them. If the list is too long you’ll feel hurried.

I always used to feel disappointed after specialist visit. I don’t know what I expected but it was obviously too much. I keep my expectations lower now and more realistic… it makes for a better visit.

Hope it goes well,

Pat x

Thank you Pat for your reply.

I went for my appointment and was pleased with the specialist, he said to keep taking the the Gabapentin for the feelings in my legs which I told him since taiking them had really helped and now I do not have the hot feelings on my legs.He has given me steroids for 1 week and told me to take ibuprofen,paracetemol etc for my back pain but to take them regular about 3/4 a day. I told him i have got an appointment in Jan to see the physio which he said was a good thing. I mentioned the new drug Fampridine which is not available yet but he has put me on the list when available. I have to have another MRI scan

How are tou doing?

Take care

Karen x

Hi Karen, glad it went so well. He sounds good. I’m surprised he’s put you on steroids for PPMS. Unusual but he must have his reasons.

I’m doing ok. Feeling a bit stressed about xmas even though I’ve done everything to keep it small and simple. It’s sort of gets out of control whether you like it or not. I’ve got a good friend coming over in a while and we’re going to eat good food and watch dvds. That should do the trick!

Have a good Christmas hon.

Pat x

Hi Pat

Yes he has only put ne on them for a week 5/day for 5 days?

Yes everything is done now so enjoy your food and dvd’s. I think i will go out later to my local with my hubby, y not isnt it.

You have a good xmas too,speak to you soon.

karen X

Hi, glad you were pleased with how your appointment went.

Just wanna tell you this,incase it helps with the low back pain.

Over the 14 yrs Ive had PPMS, Ive had several lenghty bouts of low back pain. Theyve been so bad at times, that ive cried with the pain.

BUT.I reckon all the pills in the world wont help this particular problem, if your support cushions arent right.

I have tried many and now have the right one. Got it off ebay.cost 12 quid or so. It is about 10x 11 inches and curved.

luv Pollx

Thank you for replying to the post.

I will have a look on e-bay later.

The specialist told me last week to take siclofenic for my back and also take the gabapentin for the nerves in my legs?

Thanks again

Karen x