Professor Grahame- who is he? Appointments?

[Rosie]

Woohoo!



My first appointment with Prof Grahame has come through and it is next week! All I have to do now is organise time off work, childcare, transport, cover for my teaching hours, someone to go with me, and probably more I haven't thought of.

I seem to remember there used to be a number of posts about what kind of information to get together befored hand. Can anyone give me some ideas about what to expect? I know I need to write things down or I will forget half of the things I want to ask, and my sister is trying to get time off work to take me so I will ask her to come in with me in the hope that between us we should remember what he says.

I also seem to be remember a few people descibing their feelings afterwards - really pleased with the diagnosis and then coming back down to earth with a bump?

If anyone has any suggestions I would like to hear them.

Rosie

[kayadlington]

This is what Az told me to mention/have answers for when I asked

Past medical history related to HMS

Age for diagnosis(If diagnosed, if not leave out)

Complications.

Joint problems

Skin problems

Childhood problems.

Digestive tract.
Past medical history unrelated


Operations ..
(Include a section for any operations needed due to HMS)



Pregnancies

Family history... (Their medical history here. Only paternal and maternal needed, not cousins ect really unless several cases of HMS/ES ect)

Social history.. (Ie smoke, drink ect)

Status

Work.

Drugs . (Prescribed, not yes please )



Allergies.

Other....


This is something that was taken from an old book of prof Birds so please members don't worry of your doctor didn't ask you these things it's just suggestions

.

Hope it helps
Kay

[Sez]

I took with me a list of things I find difficult to do. It's something I put together for my DLA review and it's four or five A4 sheets as a two column table. On one side I put the activity I find difficult and on the other, the joints it causes pain in (if any). I split it into "Morning" "At Work" and "Evening" and then at the end put all the little things, like the marks I have all over, which are apparently due to the collagen deficiancy, a bit about my depression, how difficult I find socialising and things like that. Unfortunately, we were sitting at the train station having a coffee beforehand, and the drinks were in those nasty cardboard cups with plastic lids. My fingers were severely playing up and kept having these funny little spasms, which made me squeeze the cup too hard, the top fly off and coffee rain everywhere . I did this three times before OH took it off me and put the whole thing inside HIS empty cup to try to give the cardboard a bit more stability. So I went to my appointment in coffee smelling jeans and a sticky wheelchair and produced a wet, coffee stained document for Prof G to look at! .

[nonyanomemory]

Hi good luck with the appointment. One minor thing I had trouble persuading my daughter last time not to wear jeans. Professor G did say he is going to have to put laughing - must put don't wear jeans on the appointments letters. He will need to examine you - so wearing accessible clothing for easy examination may well help! i am in a rush but will put anything else I can think of later. nonya

[Sez]

Good point, Nonya! No one told me about "accessible clothing" and I didn't get an appointment letter as I had arranged it privately. So I turned up in jeans, boots and a long-sleeved top

[platinumstar7]

Hiya

Just wanted to add my good luck wishes for your 1st appt. I had mine on 22nd Oct 2005.

I took the letter from local hospital saying "not severely hms", copy of physio notes, my mri scans and a list of symptoms I thought were relevant. In actual fact he asked pre-determined specific questions. So dont worry if its relevant he will ask you the questions!!! He is very thorough and considerate.

I had to strip down to my underwear in order to be measured accurately so was glad I had matching bra/knickers on....lmao. I too wore boots and jeans but he didnt mention it apart from asking me to strip off.

I would say I wish I had remembered to take address details of anyone you want him to copy your report to. I ended up elivering some myself because I didnt take the details of people like my physio. Bearing in mind appt Saturday, I got full report on Tuesday!!!!

[nonyanomemory]

I think those people who pay privately receive their reports quicker as is normal when paying instead of nhs - Ireceived mine in about 1-14 days.

I think the jeans were mentioned as my daughter is a teenager! First appointments generally there is time to examine etc but restrictive clothing takes a little longer to get on and off. In my case - I need someones help to undo buttons/pull off - put on boots etc and can't take off jumpers etc so in order to save time did think about wearing my pj's .

I had my first appointment with Prof G over 11 years ago now and remember him being so kind as it was pouring with rain - he was worried that our clothes would be wet on the return journey. Ultimately he understands hypermobility and will readily put you at your ease - he understands how tiring a long journey is etc. So don't worry too much if you forget anything. nonya

[suzannehorne]

When I was diagnosed in 2003, I did not have to wait long for the report from professor graham. I was an NHS patient and would have to wait about a week.

[Sez]

I saw Prof G on the Saturday and I think I had my report by either Tuesday or Wednesday.

edited to add I was private so didn't have to wait very long.

[shellbell]

i've been approved for an appointment, im just waiting for a letter- how long do they normally take once you've been approved?

[Guest]

Professor G did say he is going to have to put laughing - must put don't wear jeans on the appointments letters.

Must be just us who wear PJ's everywhere Seriously I wear yoga pants or similar and take shorts with me. Though have worn PJ's to physio

[Rosie]

Thanks all for your replies, I'm a little nervous about the appointment but also very relieved to be seeing him.

Az - had to laugh when I read your post as I am in PJs now, and have been since I had a tooth out yesterday morning. It didn't go too well but could have been worse, my dentist understands about the local not working.

Shellbell - my GP referral was at the end of August, and I had my first letter mid September. They told me I should be seen in 15 weeks max, probably less and they have kept to that. Round here it is a 9 month wait to see a rheumatologist as Wales has not targeted waiting lists as they have in England.

[shellbell]

yeah- i was told the 15 weeks, was just wondering whether people generally had to wait that long.

mind you, im not complaining- i was only referred by a huge stroke of luck anyway!

[Rosie]

A quick update. I traveled to London last week and was seen by Dr Hakim (sp?), not Professor Grahame as I was expecting, but that turned out fine. My diagnosis of HEDS/HMS was confirmed and I spent nearly an hour with him. He arranged for me to see a physio as well (Sophia M, I can't remember her surname) and she saw me, although the physio department was closing. I spent nearly an hour and a half with her.

The trip was definitely worth it, everyone was very friendly and helpful and Dr Hakim has kept me on his books and said I can contact him any time. We talked about how to set about improving my core stability, which I knew I needed but didn't know how to do it. We also talked about paing, pain relief and various other things.

Basically I feel reassured about what is happening to me, and the ways I can help myself, and how to cope with the things I can't do anything about, does that make sense? I am waiting for written reports from both of them and I know I need to have a hard yhink about my job and the hours I work, I have already set tyhe ball rolling for this in work.

I feel more confident now about asking for help, and I can explain better what help I need and why I need it. Having my diagnosis confirmed has given me (much needed) confidence to argue my own corner and ignore the sceptics. I also took one of my sisters with me and she was helpful in answering things about my childhood I didn't know. It has also helped me that she now fully understands what I am going through and can explain to others mfor me if I want.

I think I have rambled on long enough now, but writing this has helped me focus my thoughts. Thanks to anyone who has read this far. For once I feel and instead of and

[nonyanomemory]

Hi rosie, a long journey for you but it sounds worthwhile. You have said everything in your post about it but I just wanted to say I am glad you had a positive outcome if that is the right way to put the diagnosis, but I think you know what I mean. I hope. I hope you now get support and understanding following your diagnosis.

Take care Nonya

ps - I read all the way to the end nd didn't mind either!