I keep asking about the pain clinic and i get there is a 18 month waiting list. I meant to say I’m on 3x400g Gabapentin three times a day and the neuro has said in a letter dated last April (2011) that I’m not allowed to go any higher than 300g three times a day. Once gp i saw basically said to me that if I go any higher I will become addicted to them and then I see another gp and they said they are hapy to let me go higher. So because I can’t see the came gp ever time I get told different things so I can’t seem to win.
So I just don’t know what to do. But going to have a very long chat with my MS nurse when I see her on the 6th Feb.
Thanks again everyone
Allie xxx
Hullo, Allie.
My name is Marcus (I’m not female) - I read your letter and although I don’t have any ‘Pain’ at the moment, I did remember when I used to be like that (I’ve had MS for 13+ years and I used to think that it would never go away! - (I don’t have any cure?) - similiar to what my doctor says (He has 2 relatives who have MS, and he is ‘prepared’ to 'adopt MS himself).
I’m on a fairly low dose of ‘drugs’ but it is better to let the doctor ‘stay in charge’ but it does help if he/she has experience of MS - Mine does and ‘realistically’ he cannot (or any other doctor cannot) prescribe a 100% cure - join the club of (as they say) over 100,000 who have MS. I am 55 years old (married to a girl from Northern Ireland) and when I experience pain, I immediately ‘shut down’ nobody is allowed to disturb me - I just RELAX - that is most important! - stop answering the phone (get an answering machine) - don’t answer the door or perhaps do it yourself and ignore everything I’ve said - it’s your MS and you can decide what to do. As far as what you call ‘the bedroom department’ - I have to wear a catheter (for the last few weeks) and although it is ‘claimed to be possible’ - I haven’'t worked it out yet! (I don’t know how it is affecting my wife?) - she’s Catholic and I’m not ‘anything’ (brought up in Church of Scotland) but don’t do anything now!
I apologise if this note has done nothing for you but (like me) you’re pain ‘should’ get better (might take years though - but it is worth the wait? - put a ‘question mark’ because I’m not sure).
I’ll go now because my fingers are getting sore (at typing) - I am on the phone and I haven’t really spoken to ‘anyone with MS’ in the 13 years or so that I have had it. My neighbour’s brother has MS but I don’t really ‘see him’ (about twice in the time that I’ve been in this house - about 14 years.) My neighbour works all hours so I don’t really see him either (he’s a sergeant in the police). Nuff said!
Hope your ‘pain’ gets better,
Marcus.
(please excuse any errors but to be honest, I don’t really ‘give a damn’ - I’m just away to RELAX!)
The normal steroid for MS is Methylprednisolone, used for a rapid relief of inflamation. The normal dose for such purposes is much higher than its other applications. The side effects of Methylprednisolone are really not nice to read about, and if you don’t have Omeprazole at the same time, the stomach cramps can be sheer agony (been there, done that, printed the T-shirt).
The “6 months” thing which I have had from two different sources is apparently in the product literature, and seems to be so that some of the side effects do not mask a new clinical problem. I do know someone (with RRMS) who always gets a fresh 5-day course of tablets to take with her when she goes on holiday “just in case”. Her GP is happy to do this.
I could say that the cost is cheap as chips, but it is probably cheaper! Of course, when you get it in Hospital as an IV treatment, there are other costs to consider, but the relative cost of a 5-day course is less than a single injection of Copaxone.
I have had relief from a relapse with Methylprednisolone - both IV and orally -but the last time was 16 months ago. Since the daily Copaxone shot does seem to have reduced the relapses, I hope that I don’t need steroids again.
Geoff