Hi,
This might be a long one as I don’t really know how to break it down!
Basically I’ve had MS all my life, as a child I was told it was either growing pains, one of those things or I was being a drama queen, or worst, with my eyesight problems and inability to walk at times, that I was making it up!! Anyway, I had 3 children and was 28 before I got a diagnosis, after a relapse that they couldn’t put down to any of the above…
The GP I had at the time was old school, very nice and in it to genuinely help people… then he retired and we moved out of that catchment area. The problems started then. I had already been to the Leicester General and saw Dr Kimble (or something like that), the guy was erm, well, completely away with the fairies so I had asked to be changed to a hospital where they didn’t just sit there talking about his random old friends who had moved to france to buy a vineyard (yep that was the sole conversation he had in my appt! Nearly an hours drive each way for no reason…)
So by this point I had tried 3 meds through the LGH and not one suited or helped longer than a few days.
Out of desperation, I tried to get somewhere with the local GP’s, finally got to see a consultant at the George Elliot hospital in Nuneaton and she didn’t listen to a word I said, blatantly asking questions as I was answering the previous one (and I mean she’d left me to spit out 3 or 4 words then the next question came). She told me she wanted me to self refer to some psychological service for depression - I must have told her 3 or 4 times at least that I wasn’t depressed, I was just in pain! My husband even had to reiterate it and he tries to not say anything! I asked her if I could have co-codamol / Solpadol, as I had a car accident in Jan 2003 and was given that - I told her I never felt as well and pain free when I had that, a box of 100 lasted me near on a year as I only take meds when I absolutely need them. (Even in childbirth, meaning I had 3 without painkillers, not to prove a point, it just never quite got bad enough until the last few mins when there was no point!) She said no, they don’t prescribe such meds for MS and she wouldn’t agree to me trying LDN as I have depressive tendancies (I told her again I AM NOT DEPRESSED!!)
Anyway that appt was 16th Nov, I just spoke to the GP surgery and got them to chase this letter so that I could discuss the meds with the doctor and hey presto, the 3 meds I already tried were listed as suggestions and then a 4th that I researched and I would not take for the side effects. I have always been hypo sensitive to meds - if there’s a 10% chance I’ll have a side effect then I usually get it, hence why I started researching them… the list was Amytriptaline, Gabapentin, Pregabalin and Duloxetine.
I just want to try the co-codamol, I don’t want to be on meds when I can deal with alot of the pain (never felt normal so don’t know what its like to not be in pain tbh!!), I just want meds that I can take on an as and when basis. I home educate my 2 middle children (very successfully so far!) and don’t want to put a spanner in the works with that. My husband was given these co-codamol the other month and I’ve been taking a few of his - I know they work still, not that I’m gonna tell the GP that!!
So I’ve not got the GP backing me or the consultant. We haven’t got another surgery we can change to as we live in the countryside and there physically isn’t another surgery that will take us. I’m awaiting a call from the MS nurse, I left a msg before and they never rang back so I don’t hold out much hope this time either… I need to do something but I have no idea who to speak to or what to do??? Any ideas??!