Please post here for UCHL visits -

[Hannah_Banana]

Hi all

Only a quick post as im really tired-Went to see dr hakim today and he said about hypermobility syndrome and is sending me to have physio with a teenage physio group.I said about my feet,He said he's never heard of bunionettes but examined them and said they feel like bone and could be part of a bone in my foot jutting out on each foot he sent me for an x-ray but he will get them in a few days as its all computerised.im sure mum will write a more detailed post tomorrow.

Take care all

Xo Hannah oX

[nonyanomemory]

Hi Hannah, thanks for taking the time to let us know, you do sound so tired hun. Did you get to have something tasty to eat.? Last time I went to UCH I was exhausted too. Hope you have a good sleep Hannah.

[LianneS]

I said about my feet,He said he's never heard of bunionettes but examined them and said they feel like bone and could be part of a bone in my foot jutting out on each foot he sent me for an x-ray but he will get them in a few days as its all computerised.im sure mum will write a more detailed post tomorrow.

My bone on both my feet sticks out, by my big toe and my big toe sort of slants inwards a bit....
I was always told it was bunions until they did an x-ray and it turned out it was my bone, it was how Id been born and was nothing to do with ill fitting shoes etc...(bunions are caused by things like that)

The only thing they could do was cut and shave the bone and pin it back together, needless to say I didnt have it done and since seeing people who had that op Im glad I didnt.... It just weakens the joint and can cause more problems..

Lianne

[Blunderwoman]

Hi all

Sorry its taken so long to post an update. Thanks again to everyone who posted with help and directions - it made the day much easier. We looked round for somewhere to eat and ended up at McDonalds more or less opposite the hospital!!

Dr Hakim was lovely. He was funny and kind and he asked if we had any questions or worries. Some doctors just talk over you and dont listen but he didnt do any of that and I came away feeling relieved and thinking that we may start to get somewhere now.

What he wants to do is refer Hannah to the Adolescent Unit for physio and also to see a Podiatrist. The physios here at our local hospitals freely admit that they dont know what to do to treat Hannah and Dr Hakim says that we will have to attend UCH to start with and then hopefully the local physios can take over (with lots of guidance from him and his team). He is hoping that the physiotherapy will help avoid more surgery in the future. He Xrayed Hannah's feet as he wasnt sure but he thinks she may have some kind of bone growth there which can probably only be corrected with surgery. He also said that perhaps he would help with pain management in the future. One thing I found out is that HMS sufferers respond to pain medication differently and I could never understand why Hannah would say that different pain medications didnt work for her. I felt so bad that I didnt believe her.

Dr Hakim also gave me a copy of an article that he has written with Prof Grahame and I am going to give a copy to our GP as it is very informative and I think it will help him to understand HMS better. He does try to help but he keeps saying that Hannah's joints will stiffen up as she gets older. Firstly I am not 100% convinced of this and secondly how long will she have to wait before this happens - she is only 15 now and if he is talking about the usual old age thing thats not much help. If anybody wants to see the article let me know and I will see if I can scan it and PM it or something (Hannah will have to help me!!).

All in all we had a good day.

Take care

Pauline

[Mari]

Hello Pauline,
It sounds like you had a satisfying visit to Dr Hakim, which is such a relief when you've been going round in circles for so long. I agree, Dr Hakim is lovely and completely understands.

What was the article about exactly? Was it about HMS generally, or Autonomic Dysfunction with HMS , or something else? It sounds interesting.

As for your GP saying that Hannah's joints will stiffen up as she gets older, well we do become less hypermobile as we age, but unfortunately that doesn't seem to decrease our pain or other problems. Factors that influence this may be that we may have caused some damage through various injuries and we may have early osteoarthritis. What may well help Hannah are the steps that Dr Hakim has begun to take - physio, podiatry and pain management.

At least now, Hannah will begin treatment that can improve things for her. I'm really pleased for you both.

Mari

[Blunderwoman]

Hi Mari

Thanks for the post. The article is called " Joint Hypermobility Syndrome: An Update for Clinicians" and covers lots of areas starting with a description of HMS, the prevalence of HMS and joint hypermobility in the population, identifying HMS, photos of joints for the Beighton Score test, a detailed description of the Beighton Score and the Brighton criteria, symptoms of HMS, managing chronic pain and fatigue and treatment/management of the condition. Although it is written for medical staff it is fairly easy to understand and covers just about everything and is dated 2003. If you would like me to try and send it to you, let me know.

Take care

Pauline

[suzannehorne]

I was also told that my joints would begin to become tighter as I get older by professor graham. I was doubtful, but I must admit in the last 2-3 months although I am still getting dislocations daily, the number of them is decreasing. The pain is just as bad, if not worse because of changes to medication. I was told my professor graham, that the worse years are your teenage years (i have had symptoms since 11, diagnosed age 13, now age 18). So although the pain and dislocations do affect my everyday life, I can see a slight improvement as my joints are not quite a stretchy.

[Guest]

I got told that my joints would remain hypermobile for life and that I wouldn't get better but I would learn to cope with it, because people with HMS have no working collagen their joints are hypermobile. Unless doctors figure a way to get working collagen into our joints ect we will remain hypermobile. (unfortunately).

[nonyanomemory]

Hi Sophie, I think maybe what was meant by that statement was that you are probably born hypermobile and that won't change, I am not sure entirely sure about the no working collagen bit as that isn't something that I have heard before. It was explained to me that there is collagen but it is sparser and more stretchy as a result because the collagen fibres within are not so well knit. In essence it is true that human beings get less stretchy so therefore less bendy as they get older. I am not entirely sure that this makes the pain less as this certainly hasn't been my experience but everyone is different. Because of the hypermobility at least for me I think I have been more prone to over use injury and accident and therefore over the years have put more wear and tear on my hypermobile joints than someone who isn't as a result. So I am not entirely sure that I would say the pain has lessenened as I have aged I would say it has increased but changed. I do know that pregnancy and puberty exacerbated the pain of the EDS. But age has caused osteoarthritis etc so to say that HMS improves with age is a little for me like saying which comes first the chicken or the egg. But the hypothesis that the bendiness decreases with age I think is something that rheumatologists say to make the patient feel better but in essence it is true.

nonya

[cocol]

Hello all,

I have my first appointment with Dr. Hakim in a week's time. I'm so excited to see someone that will understand and not only stare at me with that "you are faking it" look. I've been reading through the posts and I have a good idea of what will happen, what I have to take, etc. I have only one question: Do I have to take someone??? I mean, am I going to be tired? I was thinking of going by myself but I don't know if it would be more convenient to take a friend with me. At home I would normally go with my mom but, well, I have no family here!

[Rosie]

Hi Caroline

I took my sister with me when I went to see Dr Hakim. I thought that between us we might remember more of what was said, that she may know things about my medical history that I didn't, and that at least that was one member of the family I wouldn't have to explain things to. I also found it useful to havee someone with me to go and get train tickets, check where we were meant to be going etc.

I wouldn't worry about going on your own, but you may want someone with you for reassurance and company, as well as if you get tired. You could always ask a friend to go with you, but leave them in the waiting room when you see the doc, if you didn't feel comfortable having them in the consultation. My sister was expecting to be left in the waiting room.

It's your choice, I think you would be fine on your own 'cos they are very friendly and professional, and fine to take someone with you if you want.

Hope this helps.



Rosie

[nonyanomemory]

Hi Caroline,

I think Rosie has said everything really really well to be honest. Ithink a friend or relative who understands that at the last minute you might want them to come in with you but may not woud be great. I have a habit of saying 'I'm very well thank you when asked by people' so after all these years my husband goes in with me but my sister will also if asked. Friends would to if I asked. There are moments when I wish I was in there by myself so that I could say those things that I don't when someone else is there but hey thats just me. I also have a habit of completely forgetting what has been said to me in the 'bigger' type of appointments - I am still here so obviously nothing life threatening has been said thus far! For memory reasons and the fact that I tend to babble on a bit about irrelevancies in these type of situations I think if possible a silent observer who says something if you give them the nod! is helpful. On the other hand - going it alone if I had to these days I would go in with a little list of my most recent concerns and also ask for time to jot something down. Either way I am absolutely sure you will be treated with respect and consideration so in a way I honestly don't think either way will be wrong.

Good luck let us know how you get on - mainly just be yourself that will suffice.

nonya

[Guest]

Hi Caroline,

When I went to see Prof Grahame my Dad came with me. At the time I would have preferred my husband to come, but since my Dad was paying for the train tickets, etc I couldn't really say no to him. But at the end of the day I was really glad he came.

My family had been fairly supportive when I started having problems but since all they knew was what I'd told them and most of the time they couldn't actually see anything wrong with me I think they all had doubts. My husband could see how much I suffered on a daily basis but when any body else asked I tended to play down my pain. After my appointment with Prof Grahame my father was almost shocked. Even though we weren't really told anything that I hadn't already told my family, hearing the confirmation from a specialist made all the difference. Plus Dad came up with some questions that I wouldn't have thought to ask.

Basically what I'm saying is that it has really helped me to have someone else who now properly understands what I'm going through.

Good luck


Sarah

[cocol]

Thank you all for your input.

I think I'll take my boyfriend. He's seen me in my worst days and he could ask questions I wouldn't think of. I'm sure he'll remember to tell stuff I forget ( I have no short term memory ) I think even if he doesn't go in with me, I'd like to see him sitting there when I finish.

I'll let you know how it goes!

x

[cocol]

Hello all,

Just had my first appointment with Dr. Hakim today and it was great. He listens to everything and asks the right questions. First doctor who doesn't think I'm 'faking it'.

He was very interested in my family history too. He is going to give me a referral to a geneticist, to the autonomic clinic (at the Institute of Neurology) and to physiotherapy.

Will post more tomorrow, cause I'm a biiiit tired!

bye