GP and Consultant not interested...

Everyday living
1

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??!

2

Phew…difficult situation…but you already know that, eh?

I dunno what to say tbh either.

I had the runaround from 14 different neuros for 14 years! They kept saying I probably had PPMS.then I didnt and it was a hereditary illness…then back to MS and now my diagnosis is;

spastic paraparesis…cause unknown.

Great, all that prodding, testing, waiting etc and i still dunno what`s what with me.

i have little faith in the neuros. GP is ok, but feels stuck as I am under the hospital.

What on earth can you do, when you are up against such unhelpfullness?

But one thing is not so bad, in that you do have a diagnosis.

I`m really sorry I cant offer any useful advice. I just wanted you to know someone has read your post and understands your plight.

Hopefully someone else will be able to suggest something positive.

luv Pollx

3

Hi there MSmum,

There is no blanket ban on cocodamol for MS (I am prescribed it). However, it will NOT work for nerve pain - only musculoskeletal.

It’s common for people with MS to have both nerve pain and musculoskeletal, so it’s important to find out which is the main contributor in your case, as cocodamol will achieve nothing if it’s nerve pain. As all the suggestions made so far have all been meds for nerve pain, it appears there’s an assumption that’s what you have, and that is why they feel . cocodamol wouldn’t be helpful.

If you just want to “try” it, and, as you suggest, would only take it now and then, why not buy some? You don’t need a prescription for cocodamol. I only have one because it was getting prohibitively expensive for me to buy all the time, and the shops can only sell limited quantities. But you can certainly buy enough to try the experiment of whether it helps or not. If it did, you could go back to the doctor armed with that knowledge. It would be harder for them to justify refusal, if you could show you already KNOW it helps.

But the other possibility is it might not work at all. 2003 was a long time ago: the pain you had then might not have the same cause or treatment as now. If cocodamol didn’t touch today’s pain, you’d be faced with the conclusion it’s probably nerve pain, and you’d therefore be unlikely to find relief, unless you try one of the suggested meds for that. (There are no over-the-counter treatments for nerve pain).

Tina

4

P.S. Sorry, I just re-read and see you’d already tried your husband’s cocodamol, so know they work. I don’t recommend telling the doctor you did that, so just say you bought some - which you’re perfectly at liberty to do.

They’re pretty cheap anyway, if you only need them now and again, so if you get no luck with the doctor, I’d just stick with that. They can’t stop you, it’s not illegal. Just a bit of a buisance to keep buying them in dribs and drabs, instead of having them prescribed officially.

Tina

5

Hi Pol,

Thank you for your reply Oh my, what a joke eh? Did you have anything come up on an MRI? I thought that was the ultimate test they could do to prove / disprove MS (well thats what my old GP said when I had one). I had scarring in my brain and spinal cord and that was it, they said it was definitely MS. They told me I had PPMS at the time, then the relapse went away (to a point), now they think its SPMS. Well I say now, that was the last thing my old GP said and I haven’t heard what they think it is now if they’ve given it any thought at all! (That was in 2010).

It does help to hear that I’m not the only one who’s in a position because of these (so called) experts, I have even contemplated going to a chinese doctor to see if that might be a bit more successful… Although in the same way it helps to hear of others in similar boats, I don’t wish this rubbish on anyone, bloomin miserable to say the least isn’t it?!

Ria x

6

I mean Nuisance!

For goodness sake! Think I will go back to bed, as I can’t seem to answer a simple post without leaving half of it out or getting typos.

7

Hi Tina,

Thats a good idea, shall tell them that I bought some of my own! Yes my pain at the moment isn’t nerve related, its definitely musculoskeletal so I shall tell the GP that too… You’ve been a big help, thank you!! To be honest, if she says no I can still go and buy them and at the end of the day, if it gets me what I need then so be it!!

Ria

8

Don’t worry about typos, I’m used to it as I get the same lol!! Half the time its my phone deciding I actually meant something else, so I don’t take any notice when others do it! :wink:

9

I really don’t get this.

It’s true that cocodamol’s not a drug that helps much with neuropathic pain, but some people find it helpful for joint or muscle pain that can occur as a result of MS. It’s also available as an over the counter painkiller, albeit with a fairly low dose of codeine in it so why on earth wouldn’t your GP simply prescribe you some if you know it helps? It’s not a prohibited drug. It’s not a drug that will get red flagged to the PCT if the GP prescribes it. It’s commonly prescribed. It’s not contraindicated for MS.

I’m baffled!

The only thing I can suggest is to try your GP again. If all else fails, have you tried a combination of over the counter painkillers (e.g. one cocodamol and one ibuprofen)? As long as you don’t go over the daily maximum for each and you don’t mix drugs that have the same contents / chemical action (e.g. cocodamol and paracetamol), taking one of two different meds is normally more effective than two of the same med.

Good luck!

Karen x

10

Hi Karen,

Thanks for that! They just said last time that it is ineffective and addictive, not suitable! I’ve tried the lower dosage 8/500 x 2 but the one that actually helps is the 30/500 x 2. I have tried the lower strength with 2 ibruprofen on top as they didn’t really do a great deal on their own, but still, the most effective thing for me is to just take 2 of the higher strength…

Got a different GP ringing me tomorrow, shall be armed with the right ‘key words’ to hopefully push him to prescribe what I need.

Shall update on here what they say!

Ria x

11

I’m always puzzled by the term “addiction”, in the context of a chronic medical condition. If somebody requires a drug permanently, because their problems are permanent, then to me, notions of “addiction” are superfluous.

I don’t think it’s great that I’ll probably always need painkillers, but I don’t consider myself addicted to them either. If there were no medical justification, then usage at my levels no doubt would be considered an addiction. But how is it an addiction, when the alternative is chronic, unresolved pain, and a miserable quality of life?

Even if it IS an addiction, it’s probably still preferable to making do without. Taking tablets all the time isn’t good for you, but neither is permanent pain!

Tina

12

Well thats how I see it too Tina! Anyway, potentially addictive or not, the proof that I only take them when needed was from when I had them prescribed before, 100 lasting a year doesn’t sound very addicted to me!!! I literally go to my limit before I pop a pill, I’m only taking them once or twice a day at the moment as the cold is bad for me and I can’t sleep with the pain…

Just love how these people think they know better than I do about how I feel and what I need help with! I am still flabbergasted that the consultant tried drumming it into me that I was depressed, she’s even written it on the letter!! (I did walk out of there feeling a tad depressed after that though, not that she knew that!) I hope I get a nice consultant sorted before I have to get a letter for my benefits or anything, have pretty much given up on the hospital being any other use…

Ria

13

Well, armed with the info from you kind people, I’ve spoken to a different GP at our surgery, told him what I’d been told on here and he has agreed to give me a prescription for 100 30/500 co-codamol!! Yay, finally!!! He’s put it on repeat too so my normal GP won’t argue, he also advised to tell the Consultant straight that she needs to listen as I didn’t feel she did last time (I know she didn’t but I agree with the idea of tackling her like that!!)

Also spoke to the MS nurse who assured me that the Consultant isn’t normally as dismissive and that I should give her another chance…

14

Glad you got a prescription sorted,I was surprised that the gp wouldn’t prescribe them. I’ve been on them for a number of years and the strong ones 30/500 of which I take 8 most days, in addition I have a morphine patch and then take pregabalin. Hope these help ease your pain. X

15

Thankfully you have managed to get a GP to listen and give you the prescription. l get paracetamol 500 and codiene 15mg pills on prescription - so l can use what l feel l need at the time. Also, lbuproven works well with the codiene/paracetamol. l need the codiene to help with ‘overactive’ bowel - paracetamol helps too. But if you are constipated then they can make matters much worse. Like you - l find most meds have terrible side-effects for me. Especially baclofen/tizanindine/ oxybutinin/ gabapentin -they leave me feeling weak and feeble and l don’t need that!!! l get on very well with LDN - as it boosts your endorphins and makes you feel so upbeat and positive. And l also get Sativex on prescription - which helps with muscle-spasms and stiffness.

All the best

F.