GPs - "Your an MS person? Bye, bye then!"

Everyday living
1

Hiya all

In my experience a lot of GPs don’t seem bothered with me. Being housebound without help it is a tough one. In Sheffield I did call them out a mighty 3 times in one year - infact this time last year. He seem a bit angry and also when I offered if he would like to touch my side of the torso - that was aching and also numb he said, “No!”

After moving to the Wirral in an attempt for a better life I have used the GPs here several times. I mentioned back in April that my little right finger wasn’t right and hurts. This has been mainly ignored and it seems ok. No xray. Zip. This week it has swollen to twice the size of the left and is also red and itchy.

It also took several visits over a UTI that the bladder nurse gave me. They kept saying “It’s normal to have bits in your urine after ISC. It’s normal to have a burn for a while. It’s ok that your weeping. It’s fine that your urine is cloudy.” It wasn’t until a bladder nurse wrote to a GP that they finally gave me some anitbiotics to clear it up. 3 months!

So my impression from GPs they have little time and certainly alot less for me. I feel I have been written off by them at 42. How about you?

Marty

2

I do feel for you. when you need help and dont feel its an a+e matter you (like eveyone in the uk) get in touch with the doctors. I always have that feeling they dont want to help now i have a neurologist and ms nurse. My uncle who has ms has changed doctors and doesn’t tell them he has ms when its obvious its not an “ms problem”. I was waiting for a call from gp yeserday which didnt happen. I have got to the doctors lots of times only to be told the doctors too busy today. But their are some gems out their, that go above the minimum to help. Its that postcode lottery again

3

i feel just like you, i quickly learnt that gps know very little about MS,mine admit that they dont,i have managed my own ms these last 21 years,and have become MY own ms expert.i just get on with it,but i am used to the fact that there isnt much help for people with MS.but i really feel for people new to it,because it does take some getting your head round,my parmer has just got used to the idea too,he wouldnt quite believe me,he thinks that there should be help, i am afraid we are just left to get on with it,and nothings changed in all this time.

4

hi marty

i fear my answer wont be popular but its my truth-only my opinion-feel free to ignore…

i have been registered with my gp for 20 years. he has saw me thru 4 pregnancies and has got to know me well during these years. he has never visited me at home (been here 15 years) until aug this year-he turned up unannounced on 2 occassions.

i believe as there is no cure and no treatment for ms that fits all then it is down to him and i to manage symptoms. i did go for an mri scan in nov cos of recent troubles-get results in may!!! gp has found out results for me cos waiting 6 months is just a joke-one that i aint laughing at!

so,i have faith in my gp. when diagnosed he said he had limited medical knowledge but i have the body and if we worked together we would get thru. he understands my reasons but more importantly respects my decisions regarding how i view and manage my symptoms. neuro,pyhsio,ot,social worker and whoever else i have tried to explain my situation hasnt got time to listen. thats despite their good intentions,thats a bigger prob than the indiviuals concerned.

so 7 years ago,i realised that theres plenty of help out there IN THEORY if u can tick all the easy boxes-i dont! single mum of 4 whos priority is being a mum. it would be easier (and expensive!) for them to take my kids into care,have me in hosp taking steroids/antidepressants and so ensure that they felt that they were ‘helping’. in reality-thats NOT what i want. i have never been in hosp-despite several times being told that i ‘should be’. my carcass is struggling mega-has been for 6 months-but my mind is stronger than ever. i am grateful that gp understands this. i do feel for you,i really do. i hope u find someone that really listens to what ur needs are-whether that be physio,ot or whoever. they are few and far between and i dunno how u will find them. maybe samaratins? i say that cos never underestimate the value of being able to offload-thats essential for your mental well being.

but i believe-other than the off loading-that we are left to get on with it. we are the only one that can deal with this. i prefer this reality rather than false hopes of ‘someone else’ being able to sort our illness/body.

as i said as start-this is only my view. i dont expect anyone to understand or agree but if this helps another person realise that their way isnt wrong then i am glad.

YOUR way is the right way for you

ellie x

5

jaki

thanks! u just made me cry!

will message you!

ellie xxx

6

My gp practice is large with many regular gps who have been there for years.

Throughout my 12 month journey so far with this new condition I have worked my way through most of them and found that not one of them has any knowledge of ms. They all say that they are happy to be led by the neuro and ms nurse and prescribe anything they suggest or I ask them for.

When I ran my care home if a person developed a new condition the first thing we did as a staff team was to learn as much about it as we could,

I can not believe that not one single gp has for their own professional integrity even attempted to look it up,if only not to look dumb when they have to ask what copaxone is,and tell me to book an appointment with the practice nurse if I need an injection!!!

On the other side at least I have a gp that is willing to allow me to be the expert in myself and symptom management and will prescribe so far anything I ask to try. They give me an upper limit on the meds I have and allow me to tailor the actual dose etc to what works best for me.

Pip

7

Hi Marty

I have been lucky really, purely coincidentally my GP has quite of few of my MS friends on her books. I wasn’t keen on her before dx. but have realised since that she probably knew i had MS 12 years ago but my symptoms were very mild and I’m glad I didn’t know I had it.

This week I have been plagued with a UTI and was seen yesterday by another GP. She was very thorough and very kind and gave me antibiotis on my symptoms, even though my urine test was clear.

So sorry to hear you have not had such good treatment, it’s the luck of the draw I suppose. There is little time allocated to anyone these days but I do seem to get a few extra minutes. Perhaps it’s cause I cried when given my dx! Who knows.

Wendy x

8

Having heard your experiences, I feel very fortunate. I see two GP’s at my practice. One is my age & has a sibling with MS & the other is the practice head. For their own reasons, both go out of their way to provide the support required. They were particularly good prior to the official diagnosis & I was primed to call immediately a new symptom appeared, then they’d call the MS nurse, get the ball rolling. Now I have an MS nurse, I rarely see the GPs, but have been pleasantly surprised. I moved house & GP two months prior to my first disabling relapse & I know had I still been with the previous surgery my experiences would likely not have been satisfactory. I’m sorry to hear of your treatment, Marty, and can only hope it improves. Anne

9

Hi Marty,

I’m sorry to hear you feel dismissed by your GP, because you have MS. I don’t feel that way about mine, but then again, I’ve rarely seen her or asked her for much…so far.

She freely admits to not knowing much about MS - I think she once mentioned she’s had four MS patients, ever (i.e. only three before me) - so it’s not an issue she sees every day. It’s understandable, then, that she’s not quite as on-the-ball about MS as about some other more frequently encountered problems.

I’ve never felt she was dismissive or closed-minded about it, though. Last time I went to see her, she said: “Oh! I’ve got something for you!”, and started rummaging in her handbag. I thought: “This is strange; whatever can it be?”.

Turned out to be a flier for the local MS Therapy Centre. She’d been invited to an open evening, or something, but couldn’t go. But she’d been thoughtful enough to remember she did have an MS patient, and to save the leaflet for me. I still haven’t been to the centre - but that’s beside the point. The point was, she remembered, and kept it for me.

She was quite upset when I was diagnosed, and I think felt guilty she hadn’t picked it up earlier. I’d been to her with what I now know to have been a relapse, which manifested as unexplained soreness in my leg. As we have a family history of thrombosis, I’d been scared it might be that. She was visibly irritated, and send me home with a ticking-off, for what she obviously considered to be time-wasting.

As soon as I’d been diagnosed, she said: “Oh, I’m sorry! You came in with that thing with your leg, didn’t you?” I think she felt pretty bad she’d been so dismissive, and that I DID have something serious. I don’t bear any grudges though. I mean a sore leg, and nothing else, isn’t really enough to prompt thoughts of MS, is it?

Over the years, there had been other things, from time to time, which, looked at in their entirety, might have raised suspicions. But they tended to be few and far between, and not obviously related - an unexplained injury here, a mystery bug there. So I don’t really blame her for not putting it all together and suspecting a wider problem.

Tina

10

Hiya to all above

Yes we do have a mixed bag of results. It just feels that if you MS then there seems to be a dismissive danger that everything is related to MS and it might clear up or might not. A UTI is a UTI. MS or not and should be treated as such. Not having to get a bladder nurse to write to them to get antibiotics after 3 months of excuses.

You can just imagine going in with a broken bone (my little finger maybe?) and saying “If symptoms still persist. Come back in a few weeks.” I have that line by the way. Tut tut.

On the news they are talking about ageism on over 70s for treatments. Hey! They should point out MS folks of any age can be in the same boat. I think.

I wonder if it Darren27’s uncle has the right method?

Marty

11

Strangley enough, since my MS diagnosis I feel like I have suddenly become a VIP at the health centre. They seem to take me more seriously and I feel like I am getting more understanding care, if that makes sense.
However they will not attend to anything they think is MS related, they say I am under the care of a neurologist and I need to contact them about it.
So a bit of a mixed bag really.

Paul

12

I am sorry for those of you who have had bad experiences with GPs mine admits he does not know alot about ms BUT is willing to learn, he had read up alot and has spoken to my MS nurse on several occasions. He seems generally interested in my health and welbeing and I feel very comfortable with him . I wish we could all have this experience as it does make a difference

regards

Mark

13

Hi Marty

I fear I may make you jealous - I’ve actually had a very good experience with my GP surgery here in Sheffield. They’ve always been very good to me and, when I moved out of their catchment area, they let me stay with them. They don’t get directly involved with the MS - that all goes through the Hallamshire hospital (which I’ve also had a very good experience of) - but will always take on board any referrals for new drugs from my neuro. They’re also good when I get an infection, sending my sample off and willing to start me on antibiotics when the results come through.

I’m very grateful for the service I’ve received, and I can imagine a bit how hard it must be to not be listened to or taken care of by those people who are paid to help look after your health.

Seems much of the time it’s a bit of a lottery how good the care is that we get.

Dan