Feeling let down by doctors

[Ems_85]

Thanks for that Anna.

I didn't know you could see specialists privately and although I'm on a pretty tight budget at the moment, I will certainly look into it. I'm sure even saving for a few months to pay for it will be quicker than waiting for my GP to see sense!

I understood that there were differences between hypermobility and hypermobility syndrome so asked for confirmation that it is HMS that I was diagnosed with. I've been told it is but nothing more can be done to help. I'm not looking for someone to 'cure me', just to believe in my symptoms and help me to deal with them. I'm glad you finally found someone to do this for you and I may well follow your lead!

I hope I get similar results!! x

[gila]

ems!
if you feel you want to "get your own back" re that HMSuneducated physio, and thereby poss helping you and other bendies in future...
ask him/her what does he/she reckon why a physiotherapist (Rosemary Keer) and an eminent professor of rheumatology (Rodney Grahame) would bother to write a book "Hypermobility Syndrome-recognition and management for physiotherapists" and why butterworth/heinemann would bother to publish it if HMS wasnt a medical condition that needed treatment and treatment by physios that know the difference between 'being hypermobile' and "having HMS"
xxg

[Ems_85]

Haha!

I like it! I was a little too upset to think of anything like that at the time (and didn't know about that particular book) but will certainly be armed with the comeback when/if I see him again. It may also be useful when I next see my GP!

x

[Purplesheep]

If your GP doesn't know anything about HMS, maybe she is willing to learn - it might help if you print out articles with information on HMS, from the main HMSA website, as well as other sources, and bring them along to your next appointment! Dr. Tinkle's books are quite good too and they are fairly inexpensive. If she still doesn't want to listen, you could ask to see a different doctor if there are several in your surgery, or change practice altogether. A GP cannot refuse you a referral to a rheumatologist without a very good reason, so if they still won't give you it, make a complaint to the practice manager. I would also make a complaint about the physio, because nobody should be treated like that! They can't tell you that your pain is not real, and they definitely should give you more than 6 minutes and actually examine you. I had a very similar experience with a physio ("Hypermobility is just a syndrome, not a condition" ) and I called the physio department the next day and told them what happened. They agreed for me to see a different physio (who turned out to be useless as well, but that's another story). But if I were you, I would definitely send them a written complaint. Also, you could try contacting your local PALS - they are an organisation which gives help and advice to people in getting the NHS treatment they need. They can help you with making a complaint and also put pressure on your GP/physio department to get you proper treatment and a rheumatology referral. I think doctors are more likely to listen to you if you have PALS on your side, as they know you are being serious about your complaint. I haven't used them myself but I've heard they can be quite effective.
I hope you can get help soon

[Ems_85]

Thank you for that.

I was just going to leave the physio thing but phoned the department and will now write a complaint. I've started to find info to take into my gp as well as writing a list of all of the symptoms I've had over the years that they said were unexplained or normal. It turns out that most of them are linked to HMS!

Thanks for your support guys, you've given me some great ideas when i was just about to 'shut up and put up' Xx

[nemonie]

In regards to seeing someone privately, if you feel you need to go down that route. Prof Grahame sees patients privately as well as on the NHS, there are a few threads here on the boards with up to date info about how much it costs (not that much?!) and how to go about it.

Well done for complaining - poorly trained physiotherapists are the bane of our existence.

[barkingmad]

Hi,
I dont know if you are all members but if you are, we will send information to your GP directly saying that 'we know they have ' Joe Bloggs' as a patient and as it is a poorly understood condition we send out information to help the medical professionals to support their patient'. We also point out that we do have medical liaison officers who can talk to the GP and advise accordingly...some GP's do write directly themselves and ask for info, and I have talked to several as well...it may be worth a go if you are a member, thats what your membership is for!

[lil_miffy]

Im feeling really let down today for my mum.
She had her appt with my rheumy to get her diagnosis and he says she doesnt have eds/hms! He says she is VERY bendy and has alot of arthritis and sintabliity of the joints, easy bruising and other problems causing her symptoms but not eds or hms!

I don't get it!

Prof Bird said in my first appt with him that mum probably had it and thats where I got it from. Shes had problems since her early 20s with pain and immobility but the dr today said that shes too old to start having problems?? (shes had them most her life).

Me having eds/hms has no bearing on his desicion and I thought that having a 1st degree relative diagnosed counted as one of the minor criteria now?
She scored the full 9 points on the brighton score despite being riddled with arthritis. Her arthritis is in her lower spine just like me.
She also has fibromyalgia, very easy bruising (she only has to pick up something fro her fingers to bruise or be tapped on the arm to get a huge bruise). her skin is very delicate and tears easy and shes heals very slowly.

She was bedriddn for most my childhood due to pain and her back problems and exhaustion and is becoming immobile once again due to severe pain and really bad neck instability but he says that her neck issues are arthritis.

Hes going to get her an mri done and trying her with different pain meds but its the diagnosis that i don't understand.

My life makes no sense all of a sudden. If i didnt get it from mum (and we are so alike in our problems) then i must have got it form dad and he barely has any issues, just his ankle).
I suddenly feel very alone becuase I had my mum dealing with the same condition and understanding exactly what Im living with but now she believes she doesnt have eds. Shes convinced already.

She told him shes fed up of drs and hospitals because shes been let down her whole life by them and nwo I feel shes been let down again but she doesnt realise it.
Without the correct diagnosis any physio she has for the 'arthritis' or treatment could potentially cause more problems if she does have eds/hms and this is ignored just has it has been for her 57yrs of life.

I am so angry and upset and feel like iv gone back 3 years in understanding my own EDS. I now have no idea why I have it, where it came from, will I pass it on if i have children, etc

Really wondering how good this dr is now (he believes that eds and hms are completely different conditions and won't change my diagnoses from hms to eds which cuases me problems with other drs not taking my issues seriously at times.)

[barkingmad]

That is strange because you are right. Technically if you have the diagnosis of EDS/HMS then your mum if presenting with the same symptoms she would be assumed to have EDS/HMS because you are a first degree relative. The other symptoms you describe all fit too. I wonder whether this is because they dont trust the diagnostic criteria? I will ask when we feedback to him.

I know this isnt much help but I wonder if you could persuade your mum to see him again? I know that would be incredibly hard to do but if she goes back and points out that she fulfills all the criteria and has a first degree relative whether he would consider the facts. Maybe you could go with her? I went with my mum to see Prof G after he had already diagnosed me and I am glad I did.

I do understand some of the confusion you are feeling because when our local paeds consultant stated my daughter didnt have EDS/HMS I was very unsure of my own diagnosis and he made me feel unsure of everything I had come to understand. Does that make sense? Our local rheumy had alreayd diagnosed her with HMS/EDS as well. BUt just having him tell me he didnt agree and it was all nonsense was very mentally chalenging! It had taken me years to come to terms with my own diagnosis and then to have a consultant sit and tell me my daughter didnt have it felt like he was knocking me right off my feet. It did make me angry, very emtional and I lost my confidence for a while too. Eventually I insisted my local rheumy referred her to GOSH to see Prof G and Sue Maillard who confirmed her diagnosis. They were surprised I had needed to do that but understood. It was all made worse because I was helping lots of people with their own medical professionals yet was unable to sort my own daughter out! I was then angry that I had had to go to London to 'prove' my daughter had EDS/HMS and angry that she was a lot worse than I had realised.

Dont let them do that to you Lil_miffy. Your diagnosis is correct and obvious to anyone who meets you, it has taken you a long time to get where you are and dont let them do the same to you as happened to me. You have passed a huge turning point in your life and now especially with the new bungalow (if you accept it) you have the chance to start living life to the full again.

See if the consultant will see you both together or you write a letter pointing out the obvious. It may be as you said that she is older and he isnt used to diagnosising at that age but I do know he is very willing to learn and is open to discussion. If you need any more support or info please let us know.

[AnnaH]

Hi,
I dont know if you are all members but if you are, we will send information to your GP directly saying that 'we know they have ' Joe Bloggs' as a patient and as it is a poorly understood condition we send out information to help the medical professionals to support their patient'. We also point out that we do have medical liaison officers who can talk to the GP and advise accordingly...some GP's do write directly themselves and ask for info, and I have talked to several as well...it may be worth a go if you are a member, thats what your membership is for!

This sounds really good. However, I have to say I think it would go down like a lead balloon with my GP's. They didn't even like it when I saw a consultant privately, who diagnosed me with HMS. The NHS consultants I'd seen (two of them) just said my pain, fatigue and mobility problems were inexplicable and put it down to fibromyalgia, despite the fact that I clearly have malformations of my hands, feet and spine, which have been getting worse. So when I went elsewhere to get an explanation, I was treated like I was "doctor shopping".

I don't know why some doctors are so reluctant to admit that perhaps they don't know it all, but I have to suspect it is arrogance in some cases. They don't like being told they were wrong, and they certainly don't like being showed-up by a mere patient. Recently, I've tried to get some Arthritis Care leaflets into the surgery (I volunteer for the charity) and you would have thought I was selling them time-shares from their reaction - bordering on hostile (I only wanted to put some leaflets in their information rack, like I've done in dozens of other places). I fear any HMSA leaflets would be regarded the same way.

So I might be asking for HMSA to send info to my GP practice, but as I've already been labelled as a hypochondriac who thinks she knows more than the doctors, I'm not sure how well it would go down.

[barkingmad]

It is hard when you have unapproachable GP's but we can try to get them to read some information and keep trying, and trying
On the otherhand last week we have had 4 requests from GP's for info..which is great!

[Ems_85]

Thanks for all your support and suggestions guys. It's really made me determined to get them to listen! I also met a fellow bendy at the gym this week and we're gonna help each other out. She with connection to a friend and Dr and me with an exercise programme for her. Seeing my GP again in 2 weeks and am more determined this time.

lil miffy, I'm no help with your situation but am thinking of you and your mam. Hope you get somewhere soon. Stay strong and keep ya head up!
x

[goddess]

hi beth,i gave taken diclofenac on and off for years and it never did anything for me,and disrupted my digestion and took my apetite away.But i hear it can work for some people.

[nemonie]

Hi Lil_Miffy,

I wonder if the arthritis that your mum has now masked some of the more obvious EDS signs for the rheumy. The rheumy is new to all of this isn't he and is just learning what to look for, whereas you are an expert at your own condition. I think you have said that Prof Bird said you are likely to have inherited from both sides (your mum and dad), and we know that men are usually affected less than women if at all. I know that your mum is sick and tired of doctors after all of these years, so it might be difficult to get her to go back if she has accepted the current diagnosis. Maybe you or the HMSA could get one of the medical advisers from the HMSA to contact your Rheumy regarding how to diagnose family members and older people who are affected by arthritis (I know that your rheumy is up for being contacted by phone as well). I think it is important that the diagnostic criteria be applied in a similar manner across the whole country.
Please remember that this rheumy is just learning about EDS and just starting his clinic.

[Ems_85]

Hi again,

Just wanted to say a quick thanks to you all! I took your advice and prepared for my last GP appointment with some info from the site and the article that was posted in another thread. I was also a lot more confident after your comments.
He was still quite dismissive (didn't even read the info I took in!) but at least agreed to refer me to a rheumatologist. Now all that is left is to prepare for the appointment and hope that whoever I see next understands HMS!

Thank you!