Tests In London

[lil_kt]

Hi everyone, i was looking for some advice. I haven't got a date yet for when i'll be going to London to see the Proffessor M about POTS but i know it will be soon as i've been put onto priority list. Anyway i have started getting abit anxious about what to expect? i wondered if anyone who has been there could tell me what sort of tests they'll be carrying out? I'm going down for a week of testing. Thanks for any help, hope your all doing ok. xx

[flop]

Hi,

I went to London for testing under Prof Mathias in January. The tests I had were a bit different to what I've heard others have had done but here's the list:

- prolonged tilt test with blood tests and autonomic tests (squeezing, blowing etc)

- fasted tilt test then liquid meal and repeat tilt test

- orthostatic obs then exercise bicycle whilst lying on your back then repeat orthostatic obs

- 24 hour BP monitor

- Regular lying/sitting/standing observations

- Electromyelography (EMG) on legs looking for small fiber neuropathy

I also had a visit from Prof Grahame as Prof Mathias suspected that I had Ehlers-Danlos (Prof Grahame confirmed the diagnosis).

(I am still waiting to get my full results - in the middle of my stay Prof and his team came to see me and said "so far everything confirms POTS" but I haven't had any details or any contact from London to my local cardiologist so I can't yet try any of the meds that Prof suggested might be useful).

Flop

[Maggy]

Hi,

I went down to London for a week of testing at the end of Feb this year, i had exactly the same tests that Flop has listed although i did have MRI scan and a psychological evaluation as well.

I have not recieved any formal paperwork either, other than the initial discharge letter that stated POTS has been confirmed along with urinary dysfunction. We are just waiting to see what else comes up.

The week was full of continous tests and the problem came when certain test results shown further tests were needed, this resulted in the consultants wanting me to have further tests that they had not already booked me in for.

Because of the distance to travel they have agreed i can have the tests locally and get the results sent up there.

The Hospital is very nice, and the one and only time i got to meet Prof Mathias was for 5 mins on the second day there, he does seem very nice though and the team of dr's working under him are also nice.

I hope all goes well for you.

Have you got far to travel? where abouts are you from?

[helen.t]

Hi there, I'm just back from my visit to Prof. M for my round of autonomic testing. I have been three times now but most of the pre-planned tilt tests that Flop spoke of and which I had in the past were cancelled this time as they decided to do different tests and coudn't fit it all in. I think you will probably get the routine autonomic tests to begin with (the ones Flop spoke of) to assess if you need to get something else. They take a full medical history but I have found that the doctors that examine you in the ward tend to be very busy so try to be prepared with what your main problems are. I find this part of the visit very difficult as I have so much going on that I'm not sure which is relevant, also I'm not good at answering questions quickly when under pressure. I also have a habit of saying that I don't have specific problems when I do because I have forgotten about them.

Take plenty loose clothing and joggy bottoms for day time and a pair of shoe- type slippers. Also if you feel the cold like I do, a nice warm cardigan, as it can be cold in the testing rooms. All the staff are lovely and I would give as much information as you can to the autonomic specialists when you get your tilts especially on your 1st day, as they discuss the outcome with the Prof before he sees you on the Tues. He is really nice too and puts you at ease. If you can have a relative/friend with you at that time, it helps. I say this because I usually forget half of what is said and also he sometimes asks questions to the other person with you. He usually comes around 12noon on the Tuesday, just in the middle of you having your lunch and having your 24hr BP monitor on. At least that has been my experience. I wish you well, they really do try to do everything they can to help your individual situation. Lol Helen x

[lil_kt]

Hi thanks for all your responses, you've helped put my mind at ease.

FLOP- Thanks for letting me know about what sort of tests to expect. Hope you don't have to wait much longer to get the tabs you need.

MAGGY- I'm from Birmingham, the hospital told me to tell them when the appointment comes through that i've got to travel down from Birmingham & they'll arrange any tests to be done in the afternoon on the first day to give me more time to get there. Where abouts are you from?

Helen t- Thanks for the advice, i already thought about making notes about my symptoms etc so it might help me remember what i want to say. When i get anxious or nervous i forget everything so that should help.

Thanks again for everyones help, hope your all keeping well. xx