Waiting To See Professor Mathias - What To Expect

[andreak]

A couple of months ago my daughter got a letter from the Autonomic Unit in London to say she was on a waiting list to see Professor Mathias but it could be a lengthy process

Does anyone know the timescales involved and what to expect at the first appointment

She has been diagnosed with POTS and EDS at Sheffield but is really struggling with high blood pressure at the moment with her readings varying from 186/144 to 70/50 throughout the day

Sheffield dont see this as a concern even though the daytime average is 144/116 so I'd really like her to have a second opinion as soon as possible as she is currently unmedicated other than water and salt

Coincidentally how do people feel about increasing salt intake with high blood pressure

Any advice

Andrea x

[MightyMouse]

I have a friend who's seen him--try looking up posts by "flop"using the search feature.

Are you 100% certain you'll see him and not one of his research associates/consultants?

Also, from what I understand, you may gain insights from him, but your local consultant may or may not utilize the input from him as a private physician and not an NHS doctor. just drawing from memory of discussions by others on this topic over the past decade. i'm not in the UK

[anna]

As far as I recall we were told the waiting time was around 18 months on the NHS or much much quicker via the private route, I did hear talk that Prof. M was possibly leaving the Autonomic and Neurovascular Unit, in London, I am not sure whether this is actually going to happen but it might be wise to contact his team and see what is going on.

[louloutinks]

I have been to the autonomic unit. I was first seen by Prof G in 2010 and he referred me to them for the TTT. In March 2012 I was seen by one of Prof M's assosiates (Dr Talk Very Fast!), and then recieved the TTT in October 2012. I finally got my results at the end of May this year. I was not seen by Prof M throughout at all. It is a very long process but you can put your name down for a cancellation slot

They are lovely at Queens Square. Good luck

[louloutinks]

ps I was told my high BP's were a shock response upon standing. Not too sure about that though as the shock response happens almost straight away whereas my BP can go high after 10 mins of standing.

[andybonse]

Would seeing Prof M be any use in treatment? I have private insurance so would be willing to try see him

[louloutinks]

Can you not get meds from where you were diagnosed Andy?

[andybonse]

I can get meds, but not sure as i'm very picky about meds im scared of taking new things lol, even over the counter stuff.

I am scared of trying a beta blocker what if the heart goes faster to keep blood up and then beta blocker slows it down and blood doesnt get to the brain??

[MightyMouse]

there are PLENTY of other meds to try before beta blockers. Most of them work on other pathways than cardioactive

[E246]

I was referred as a second opinion to Prof M on the NHS. I has autonomic tests then an appointment with him within 3 months. Then they wanted me as an in patient and that appointment took another 16 months. Not sure how much i got out of it - pots is a mystery - nothing works for everyone and personally i still haven't found anything that has "cured" me. But then my symptoms keep changing and when i feel ill i always want to wait until i am more stable before taking meds but when i am stable i am an optimist and really believe i am getting better.

At least you get fully tested and they picked up with me that it might be EDS and so am waiting for a referral for a test for that.

My doctor in Newcastle did not seem too happy about the second opinion and has now discharged me.

I would keep going with it and at least you are doing something that might come round sooner than you think.

Good luck