Tests with Dr Mathias

[catmcgrath]

Hi !

I am finally booked into the National hospital in London with Prof Mathias for my tests on 4th September and would really like to hear from anyone else who has had their tests there so I can know what to expect as I am very nervous!

I know I will have tilt tests but what else happens in the 4 days you are there? I have searched the site but can't find any precise details. Also , when do you receive the test results? I am also having extra neuro tests as I have had a brain hoemmarrhage as a result of an anuerysmal bleed which they want to check isn't related to my EDS. Has anyone else had an anuerysm?

I am also concerned that Prof Mathias wanted me off my anti depressants for the tests as apparantly they can interfere with the results but my psychiatrist has said no. I am really concerned that the tests won't show my correct state because of this and make them worthless. Has anyone else had the tests whilst on venlafaxine (effexor).

I am so relieved to be finally going in but also scared at what will happen..I think I am mainly scared that they will not be able to find anything wrong and won't be able to help me if you know what I mean.

On a side note, we in London are still "not afraid" and will not be beaten by these terrorists. More arrests today, unfortunately very close to where I live in north London.

Catherine

[hayley]

hi,

i have had the tests in the national hospital under prof mathias.

Like you i was very scared after having such bad experiences with doctors.

As soon as i got there a had a brain MRI scan.

Tilt table test including breathing tests.sorry cant remember what its called.

EEG

24 hour blood pressure monitor

Another tilt table test to take blood for catechlomines.

i think thats it.They are all very lovely there.I found it a good hospital experience.

It took two months for my results come back and then i had to go back in for a clonidine test .Hopefully you wont have to have that.

The waiting is the hardest.

I think the antidepressants can interfere with the tests but i am not sure.

maybe someone else can advise you on that.

I was also scared they would send me to a phychiratrist.They actually did send me to a cognitive behavioural therapist who was lovely.I got sent to him to help me cope with my symptoms but i didnt have to see him again.The funny thing was i wanted to go back to see him as he was so lovely. .

Have you been diagnosed with POTS?

take care and dont worry.

h x

[catmcgrath]

thanks Hayley it really helps to know that it has been a good experience for others.

yes I have been diagnosed with EDS type 3 and POTS but things are a little more complicted as I have residual brain injuries from my haemorrhage so Prof Mathias is going to check for scarring on my brain.

It seems a long time to wait for the results but then I guess there are a lot of tests for them to look at.

I already have a psychiatrist and CBT guy as I developed severe depression after my brain haemorrhage 5 years ago which I am glad to say is slowly improving although finding out about the POTS stuff hit me quite hard. The doctors had been putting my extreme fatigue , nausea, headaches and dizziness down to recovering from the brain injury and/ or CFS but it looks like some of these symptoms might be the POTS. I am still getting me had around it all but at least I now seem to be on the right track to getting some appropriate treatment. I've been telling my doctors for years that it wasn't CFS but they seem to like to put a label to your symptoms.

I am really hoping that after the results they can help, especially with the fatigue as I am 32 but feel like I am 92! But I guess there is no miracle cure.

thanks again and I wish you well

x

[corina]

Hi Catherine,

I think we haven't met yet as I've been "out" for some weeks, so I wanted to say hi to you. I'm from the Netherlands so I don't know what you can expect from Dr Matias. Before diagnosed I had some tests on the heart and was sent to a neuro with Dysautonomia suspection (which made me very lucky that my cardio thought of it because it's rarely known in my (and others) country). My neuro did the tilt and I was diagnosed with POTS.

So, I'm wishing you good luck on your tests in September and I'm very glad that you are still not afraid. I've heard of the arrestings this morning on the news (we often watch BBC), I'm sorry it's coming so close to you.

Best wishes,

Corina

[hayley]

hello again,

i also have EDs 3.I ve had extreme exhaustion all my life .Im 21 and trying to fight POTS is a constant battle but im going to win.I guess i push myself to hard.I also suffer with the daily symptoms that you describe.And also episodes as i call them where my blood pressure shoots up and drives me crazy.

i hope you find some answers and it all goes well.

take care.

h x

[MaryJo]

Hi Catherine,

I have EDS 3 also, and I am under the 2 profs (Grahame and Matthias). I had my tests done at the National last year. I thought the team were really good, extremely pleasant and considerate. My tester was very concerned that the tilt table might make me feel really unwell, and urged me constantly to let him know if I felt the least discomfort and he would stop.

I decided to have the testing all done in one day. I also live in London and for me coming back if necessary was not a problem. However, in view of the other testing that you require it sounds a good thing that you will be staying in.

I also was diagnosed with CFS. I have terrible fatigue, and this is the main problem which stops me from working etc..

From the results at the national, I was diagnosed with both POTS and neurocardiogenic syncope, which apparantly about 25% of all people with POTS also have. I too, was very worried about the results, in terms that I thought if they were negative then why am I feeling so bad. However, in my case it did show the POTS and NCS. The 24 hour monitor showed generally low bp, and a generally fast heartbeat. I felt at the better end of how I normally feel on the day of the test, so I was worried the results would not show how bad I was, but I got the impression that even on a "better" day there would be enough on the test for the docs to realise what is going on.

I found the National hospital quite pleasant, and none of the tests were worrying, I just had to lay back and let them do their stuff. I understand your concern about the test results, but as you have EDS, and this is linked to POTS from what I understand it is most likely that this would explain the symptoms.

Good luck, and know that we are all thinking of you.

MaryJo

[catmcgrath]

Thanks Mary Jo for your kind reply, I feel much better about going in now but have just replied to your new post about continuity of care as I think you raise a very good point.

My fatigue is disabling too and I guess a part of me is just hoping that they will be a magic pill at the end of these tests and I will feel like the old me! Well, I guess it is good to be positive!

I didn't realise you could have all the tests in one day, it was never offered to me as an option maybe because of the other doctors I have to see but I would have prefered that as I hate being away from home.

Thank you again for your reply, its great to talk to other UK people about their experiences as it looks as if they are so different to those in the US.

Please feel free to email me, you never know we might live near enough to each other to meet up for a moan!

Catherine

x

[Sunfish]

catherine -

i can't speak to the specific testing protocol with dr. mathias as i'm over in the US of A, but did want to mention that i would make sure he knows you're not able to go off of the antidepressants before you show up for the tests as i have heard of situations where docs won't perform the tests if the patient is still on a med that he/she was told to stop. i don't know that this would happen but i would hate for you to show up for the test & then have this happen. an antidepressant - specifically an SSRI - can affect test results b/c it can actually be an effective treatment for some with autonomic problems. i can't speak to how much it will affect things & in my humble opinion i'd say that no one could know for certain. you obviously shouldn't go off a med without the okay of your prescribing doc - in this case, your psychiatrist - but i would try to find out how, if at all, this will change your testing when you see dr. mathias to eliminate any surprises.

good luck with everything,

:-)melissa