How did you do it (bring up HMS with your GP)?

[star gazer]

hi, the main hmsa site has lots of info, you can also buy leaflets from the shop, I printed off the info about hms and pain from the main site to give to my g.p, and when i became a member I also used the info that came with the pack. my doc was really pleased to have the stuff i printed out from the main site as it also gave him the opportunity to look at hmsa for himself. I think it is important to pass your g.p medically based info and as the articles are written by Professor Rodney Grahame and his counterparts they carry a lot of weight.
best wishes
star gazer

[hayles]

Yeah thats very helpful

thanks you

[Spireite]

It came out in conversation at the sham that is the JobCentre (who surprisingly now insist I reduce my hours after previously ordering me to increase my hours even though I was on the maximum, so I had to see the DEA but now I don't have to see the DEA, but maybe I do need to see the DEA and she'll ring me tomorrow when I'll be down the gym cos she was flustered and late picking the kids up from school oh oh oh..) that my GP doesn't know me from Adam and is totally disinterested and totally unsupportive. So I am ordered to go to the Citizens Advice Bureau to get them to sort me out a good, supportive, interested GP.

All the GPs I've seen in my life have been appalling and shouldn't be in the job. They have all been doddery old men (seemingly older than my parents who are mid-eighties), don't and won't speak English and most are hard of hearing despite their hearing aids. When I moved house 6 years ago, I took the opportunity to try and find a good GP and asked around but everyone said avoid theirs like the plague, so I plumped for the nearest dark, dingy, dank dungeon. 'My' GP absolutely doesn't want to do anything.

How does one find a GP who can be bothered, let alone one who might have any interest in HEDS and be supportive? I think the flustered JobCentre woman's point was that I need a GP who knows about me and my medical condition, which is fair enough but how do you find or spot one? (eg I offered my GP a leaflet and he just refused it.) When I moved house 6 years ago, I only moved across town and it took 10 weeks for my notes to move. So for 10 weeks I was effectively GP-less and I needed a form signing. The old GP wouldn't do it cos he didn't have the notes and the new GP wouldn't do it cos he didn't have the notes. So I don't want to have to sample them all to find out!

Do I have to go to the CAB to humour the useless mis-named JobCentre, or what can I tell them?

[gila]

hmmmm... scratch head... I think that cab actually cant help you find a good gp, as they are a legal advice place not a general advice place ??? any chance you could just ring them to see if they can help at all?
xxg

[Spireite]

Thanks. I groped around their website and it doesn't seem to be the sort of thing CAB do at all. I eventually found an online enquiry form so put my brief enquiry there. Under type of enquiry I had to tick the 'other' box so I don't think it is likely to be what they do.

The flustered JobCentre woman didn't ring today as she said she would, so I hope the CAB reply in the next two weeks before I have to go in again.

[AnnaH]

Hello everyone,
can anyone tell me where I can get my GP some quick, basic information on Hypermobility Syndrome that is appropriate for a doctor, and not just a member of the public? I know he doesn't have much time to read tomes, but if he doesn't get up to speed soon on HMS I might blow a gasket! I've waved the HMSA leaflet under his nose, but he didn't seem that impressed.

I think the problem is that being in my 40s, I no longer have the obvious bendiness (to the untrained eye) and am now pretty stiff (although still more bendy than average). But I don't think he really understands my diagnosis - maybe he thinks it's just something for consultants to worry about? Instead, he keeps talking about fibromyalgia and treating my pain as if its in my head, rather than as the result of frequent and annoying injuries/accidents.

It doesn't make much difference to his actual treatment of me - he's following the consultant guidelines to the letter, but it might make a difference to my feelings towards him as a doctor. My dreadful experiences, pre-diagnosis, have left me very untrusting of doctors (if they told me the sky was blue, I'd look out the window to check).

[nemonie]

The new DWP handbook listing for HMS is good and government approved don't you know. It was written in conjunction with our own Prof Grahame and is intended for the medical professionals and decision makers of the DWP. The HMSA facebook page has a link with it on.

[isotope]

Reviving this thread as a good place to mention the possible beginnings of a diagnosis.

I finally made a follow up appointment with my GP to start exploring my joint problems (which have ben getting worse lately). Thanks to having joined the forum recently and started talking and sharing experiences, I was much more confident to interrupt the doctors musings and say 'I'm mentioning this because I understand it could be relevant, but I happen to know all of my joints are very hypermobile'.

Based on this, he looked very interested and then he pulled my skin around a bit, before scheduling some blood tests to start ruling things out and try to understand the root cause of my problems.

By the way, I've really no idea if I have stretchy skin, since I don't go around pulling other people's skin to see what it' does. He pulled at the skin around my wrist and then on the underside of my arm near my arm pit and I guess it stretches about 4 inches (the underarm one, the wrist is only about and inch and a half). What's normal?

I understand he was looking for signs of EDS, though he didn't actually say. Is that right?

[Crystal]

I'm reusing this post of mine as it has recently been bumped up the list. I have an appointment with my new (and much more open) gp on Thursday to discuss my potential HMS. Both my mum and grandma have been diagnosed with HMS so the chances are high. Have any of you had experience of your gp diagnosing themselves? How specific do you suggest I am with regards to possible subluxation, for example hip during sex etc?

My gp said he would take the time before this appointment to look into HMS so hopefully he will have some info.

Also, can anyone confirm that the MRI are closed for referrals at the moment?

[Retro]

Hi Crystal,

The more specific you are the better probably, basically just go with the flow. I've found that having a GP that's open to listening to you and willing to learn and research him/herself is most helpful.

Lindsey

[Crystal]

I've just got my referral through for the rheumatologist. I've go to wait until September but at least I have an appointment. My GP only put the referral through 2 weeks ago so I am really happy. I don't know much about the rheumatology department at North Manchester General but here's hoping all will go well.

Does anyone have any suggestions for their first visit to a rheumatologist? I'm quite nervous but excited at the same time.

[LazyHaze]

Hello Crystal, when I had my first appointment I came armed with a list of all of my symptoms and my mothers symptoms, I also wrote a list of questions to ask and I had a list of things in my head of the things that I really need help with. I asked my mum and dad about my medical history, like from birth, was I premature or was I a floppy baby, did I dislocate? stuff like that, that I can't remember

[Sandy L]

The idea of printing out the diagnostic criteria, then writing up your history using the criteria as a guide is excellent. Send a copy ahead, so the GP can review it at his leisure, rather than feeling rushed to get on to the next patient. Try to figure out what you want from the GP--a referral to a rheumatologist, a referral to a hypermobility clinic, or his acquiring the knowledge needed to treat you, for examples. Review the assertive method (it's been posted somewhere on this board a few times before--I can send a short description if you need it), practice it, then use it to ask for what you want.