Do we need a diagnosis?

[wobbly wendy]

Hi, I'm new here and only just found out I am hypermobile. I was told that myself and my daughter have the condition by a physio. Do we need to see our GP to get a diagnosis? Is there any benifits to being diagnosed?

Sorry if these are silly questions but I'm not sure if a physio's sayso is enough. She used the Beighton's test on us and I scored the full 9 while my daughter is a 7.

[Sandy L]

That pretty well wraps it up for you. Your might want to review Ehlers-Danlos Syndrome; Some subtypes can be associated with hypermobility. If you had vascular EDS, which is not likely, you would want to know that. Beyond that, hypermobility may explain some of your experiences, but you would not necessarily have to have it on record.

[Retro]

Hi Wendy,

As Sandy said it really depends on you. HMS or EDS Hypermobility type are not life threatning but whether you need a diagnosis depends really on how it affects you and your daughter. ie. if your daughter has problems sitting for long periods of time (which most of us do) or has problems writing then it may be wise to get a diagnosis so that she can get any help she would need at school or college. If your mobility is affected then it would also be worth getting a diagnosis. Not everyone is the same, has HMS/HEDS to the same degree or needs the same help, it is very personal.

I hope this helps a little. There is information linked from the homepage (click on the logo above) about the UK clinics are should you want to ask your GP for a referral.

Lindsey

[Plumm]

I've always known I was double jointed but have only recently learned about hypermobility syndrome. I have various aches and pains (knees, back, hip mostly) and am concerned as these seem to be getting worse as I get older (I'm only 34 but two pregnancies and a bit of extra weight don't help!) Is it worth getting a diagnosis to make it 'official' or are there recommended physio exercises and pain control that I can do for myself?

[madmum]

Welcome plumm. If you feel you need some help with pain relief or general support then it may be worth following this up. At very least physio may help and we all have individual needs. Also be aware for your children.

[ali280]

hi Plumm and welcome,
it might be worth getting an official "label" so that you can access suitable physio and effective pain meds. I have found that since being diagnosed I have been taken a bit more seriously by friends and work, a case of her pain has a name so it must be real sort of thing.
good luck
ali x

[Plumm]

Thanks for your replies. Is it best to go through a doctor or go straight to Dr Grahame (taking into consideration waiting times, etc) as I am able to go private.

[chelseagirl]

Hey Plumm,

I saw a rheumatologist first but was told that it was likely to be hypermobility but they didnt do anything for it and didn't want to see me anymore.I got my official diagnosis of EDS-Hypermobility from Prof G and had to go privately as my doctor wouldnt refer me.Since my doctor received Prof G's letter i have been referred for special physio and pain management .You may be lucky enough to find a doctor that can diagnose you properly but if you can go private and you dont want to wait then Prof G comes highly recommended

[star gazer]

Hi and welcome to the boards, I found that it was a mixed emotion getting a dx, relief that it was not in my head but frustration that it is here for keeps. I saw prof G through a consultants referral NHS my son saw him privatey after my dx and was seen within 3 weeks. my Daughter was referred by G.P to Prof Grahame 3 weeks ago for NHS appt. on the back of both my sons and my dx, we anticipate quite a long wait for her appt. as the NHS list is quite long but as Prof G has already seen 2 of us and we already know what the dx will be for her, however having the dx will give access to specialised physio, podiatry orthotics ot etc. especially as the physio needs to be done by someone with a knowledge of HMS. If you want a private appt. you would normally need a doctors letter, My son didn't have a letter but when I phoned I explained that I had already seen Prof G and an appt. was made over the phone. If you do go the private route I can pm you the details.
The decision is totally your with the do I or don't I need a diagnosis, but if you have read the info on hypermobility and you sort of fit the picture then seeking further confirmation will also help you to look after your joints and build up muscle strength. at 46 I am only recently diagnosed but had hypermobile joint issues all my life causing a lot of pain that was often dismissed, and now having abused my joints through ballet gymnastics and various other activities I now hav early onset arthritis, maybe if I had known earlier I could have adjusted what I did to give the joints less wear. But know it has meant that my children are seen and have access to the appropriate services.
The bottom line is I am glad that I am officially diagnosed for both myself and my children.
best wishes
star gazer

[sparrow]

I received my diagnosis just two days ago, but already I have seen that having a 'label' for my problems has helped. I was already seeing a physio for acute problems, and now he has transferred me onto his pain management list, so that he can help me manage my condition day to day. Also, I had already been referred to a podiatrist and had my appointment today. When I told her that I had been diagnosed with HEDS, she said that she would refer me to a podiatrist who specialised in musclo-skeletal problems for assessment. Of course, it up to you whether you want to pursue a diagnosis. But in my case, I think it will help medical professionals take me seriously and enable me to access the help I need.

[Plumm]

Thank you for all your replies. I'll make an appointment with my GP next week to get a private referral.

[dottt44]

This is a very good point.... i was diagnosed by a Physio and have never really been to have a "chat" to a doc about it. I have always self managed. Do i need to see someone incase of different types of EDS etc????

[Rosie]

Hiya

If you have any reason to think you have another type of EDS, ie not the hypermobile type, it will be worth asking for a diagnosis. If you find that your symptoms fit well within the HMS/EDS-H diagnosis, it is probably not so important. It also depends on whether a written diagnosis would help you to access better treatment. If you are already receiving appriate treatment for your sumptoms it may not have any added value. However, some poeple like to have a confirmed diagnosis for peace of mind, and I can understand that as well.

Rosie

[dottt44]

I really have no idea now.... im sure many of you can relate - ive spent too much time reading far too many things and have just thoroughly freaked myself out

[Rosie]

Hi again

Have a look on the main website for the diagnostic criteria for EDS-H/HMS, and maybe look at the start of this thread for comparing teh different types.
If you are worried about what type of EDS you may have, have a look at the EDS website http://www.ehlers-danlos.org

Rosie