Prof G Autonomic Dysfunction referal advice

[ciderpig122]

Hi Guys, advice needed pleeeease (hope im in the right place and not duplicating posts)

I saw Prof G in September 2011, I got a referal to Stanmore and am on the list for the 3 week residential (hurraahhhhh)

In Prof Gs letter he states the following-
She scored highly (22/30) on our checklist of symptoms compatible with sutonomic dysfunction known to be a common feature of EDS. Her BP lying was 124/80 pulse 93; Standing 143/86, pulse 102. This rise of 9bpm on change of posture is indicative although not confirmatory of PoTS the most common encountered form of dysautonomia seen in EDS patients, therefore she shows the multi-systemic affects of EDS as well as muscoskeletal ones.


Now, ive seen 3 GPs in our practice to see what I do about this, the last one sent me for a heart scan (no idea why and no tilt test) the heart scanner lady told me she works in addenbrooked cardiac genetic team and they see families with EDS and Marfans and treat them.

My Scan has come back normal, thank God, but my GP says that (quite rightly) UCLH are the EDS experts and would have referred me if they felt it neccesary & they havent as there is no treatment, which I know from reading your guys posts is horsemuck.

Can anyone advise on my next steps please or if anyone with similar stuff in their letter got a referral or if im just spoiling for another NHS fight and should shut up and get on with it

[madmum]

I got a comment saying it is suggested I have p.o.t.s and his advice was to take more water and salt. My gp has not done anything about it. He also suggested physio,nothing has been followed up. He also said loose weight,not easy with limited mobility.

[ciderpig122]

my physio discharged me, their occ therapist told me if i can work i am fine, both their managers were here this week and are not very happy with them at all LOL

[Rosie]

Hi ciderpig

Have you thought about emailing Prof G or his secretary and asking what you should do? they are ususally very helpful.

Rosie

[ciderpig122]

Oooooh! I hadn't! I don't suppose you have the email address do you?

Thanks!

[Rosie]

Hi again

No, sorry, I don't. But there should be an email address or phone number on the report from your visit, the one you quote above?

Rosie

[RainbowsButterflies]

Have PMed you.

[ciderpig122]

thank you! X