Hi everyone one newly diagnosed symptoms have mostly been tired and nerve pain as like shingles which they have thought I had first of all which affected a ring around my left side from shoulder blade right round my front. Have been put on gabapentin for this nerve pain but have noticed instead of pain it goes numb I’d this normal? Another question I have just been to the Ms nurse thinking I’m having a relapse as this nerve pain has came back worse and now have tingling up my face down my arm and she was t sure but with this drug I’ve noticed where the nerve was it all pretty numb instead of the tingling but have also noticed that I have numbness down my leg which I wasn’t really aware of having nerve pain. Doesn’t the gabapentin highlight wherenerve pai or damage has happened? Help please
I’m on Gabapentin 100 mg since dx’d last October. I have come to MS from Orthopaedics and 12 years of leg pain. I now have 2 bad legs…
I still get spikey pains in the right side of my back but they are more irritating than painful.
I still get a pain, perhaps Sciatic Nerve, between my hip and knee on the back of my right leg, but just irritating again.
I did have horrendous pain around the right side of my hips / bum a week or two ago, so bad that I took some Co-codamol tablets that I’ve still got from pre-Gabapentin. They worked on that problem.
I also get twitchy type pain on the medial side of my right knee, around what they term ‘Goosefoot’ because 3 muscles meet there and resemble a gooses foot. But I still have Orthopaedic issues there. I have a clicking / slapping / flicking / whatever semitendinosis muscle tendon. As I read about MS, I do wonder now whether that tendon is lose and flapping around, not so much because it is lose or long, but rather because the other muscles are short / tight / contracture…??? This idea gets me excited because it poses the question, “Why did the other two muscles get tight and become ‘contracture’, but the semitendinosis muscle did not…??? Please excuse the wrong use of the word ‘contracture’…!!!
I take 3 Gabapentin a day but feel that I could do with 4 a day as they don’t seem to last long enough. I shall ask my GP next week.
PS. I keep losing my writing, so I shall stop now…
Hello (both of you)
It’s really difficult to explain nerve pain, numb feelings, pins and needles, and all the other assorted oddities we have with MS.
Hard enough when you can point, gesticulate and mime problems. Almost impossible in writing. Especially when you are new to MS and writing descriptions of symptoms generally.
It’s also really hard to understand what kinds of symptoms you are talking about, whether they are similar to symptoms I might have had and described in similar ways (almost certainly not). Added to these difficulties is our varying reactions to any given drug.
So, in short (or long, as it’s me), the answer is that there is no such thing as ‘normal’ when it comes to MS.
It could be that Gabapentin isn’t the right drug (for either of you), or that the dosage is wrong, or that maybe you need another drug as well as Gabapentin.
The answer basically is to talk to your MS nurse and / or ask your neurologist (a good way of doing this is to phone his/her secretary and ask if you can send them an email to be forwarded to the neurologist).
I do know that my rehab neuro doctor (who is a genius with drugs in my opinion) told me recently that Gabapentin works very well as a ‘now and then’ neural painkiller, and less well as an ‘all the time’ painkiller. But that was with regard to me and my symptoms, and we are all so different in our responses.
So I would urge you both to talk to your MS nurse, GP or neurologist and ask questions about your specific pain and the drugs you are taking.
Thank you so much, Sue. Your posts are always so helpful. I am so pleased that I found this group.
In reply to a previous post of yours, I have applied for all sorts of things and have had some replies that they have put me on a waiting list… over 2 months now… There are some things that I feel are urgent, and, now Christmas is over, I am hoping that I shall be able to speed things up a bit… like a neuro physio, before I become totally rigid… and an MS nurse, who might be able to answer some questions…
My neuro said that he would see me again in 3 months, well, that is about up now, and my good leg is also bad now, I shall contact his secretary to get an appointment date… another 3 months…
Thanks again, Sue.
I’m now having a sensory relapse where my head and face down left side is numb and tingly so doc has upped my gabapen and that has helped me fornow ms is a mind field eh feel so alone as there is no support groups in the evening where I live as I am still working at the minute not sure how long for though as the drugs make me tired.
You poor thing, that sounds awful.
What type of MS have you got…???