Appointment with Prof Mathias

[ben_uk]

Hi everyone,

I live in London and am 30.

I have had POTS-like problems for years, but recently they are much worse.

I am seeing Prof Mathias next Friday and wondered what I can expect from the appointment.

Does he perform an examination on you or does he wait for more formal testing?

Thanks!

Ben

[hayley]

hi,

i am also from the uk.I am under prof mathias and he is lovely so don't be scared.

When i saw him he wanted me in hospital for five days of tests. I had a tilt table test,mri,eeg and some other ones that i can't remember.

Have you been diagnosed with POTS?

In my forst appiontment with him he took my medical history of symptoms and did all the normal neurological tests.

I hope it goes alright.

best of luck and don't worry.

take care.

H x

[ben_uk]

Hi Haley, thanks for your reply.

I haven't been diagnosed yet, but I am pretty certain I have POTS; if it is not that, it is certainly some sort of autonomic dysfunction.

I had a bad head injury several years ago and I have had symptoms ever since, but recently they are much worse (I had acupuncture and it really aggravated my symptoms). I have had a horrible 4 weeks.

I get palpitations when standing, shortness of breath, sleep apnea (I am slim and young so it is most likely neurological), erratic blood pressure, and many more!!

I had been to neurologists before and they all gave me the standard physical examination (reflexes, prick test, etc).

Does Prof Mathias give more than this - like autonomic nervous system tests - in the first appointment. Or do you have to wait for the full battery of tests?

5 days of tests sounds scary. I wonder why they can't do it all in one day?!

I am pleased he is nice as I am quite scared. This is all quite depressing, especially as there is little they can do to treat it.

Oh well, I have to try and be positive, but it is not easy!

Take care

Ben

[hayley]

hey again.

he does the standard physical examination in the first appointment. And then you might have to wait for the whole battery of tests. I think the waiting is the worst.

Email me if you like because i'm sure you have many questions.

take care and stay positive. It will all work out in the end.

H x

[corina]

Hi Ben

I'm from the Netherlands, wanted to welcome you around and wish you good luck on your appointment with Prof Mathias. I hope he can give you all the answers you need,

Corina

[ben_uk]

Thank you Corina (and Hayley).

Hope all goes well for you both too (and everyone else on this forum).

Ben

[ben_uk]

Hayley - I sent you an email.

Have a good day,

Thanks

Ben

[Ianankatie]

Hi

I also have my first appointment coming up with Prof Mathias in a few weeks and I was so pleased to see this post! Thank you!

I was wondering, had you recieved diagnoses/treatment prior to your initial consultation with Prof Mathias?

I was diagnosed with VVS and POTS over a year ago and have been through every treatment I am aware of (unsuccessfully). I am under the care of a cardiologist and he is great with the initial syptoms (drop in BP, tachy etc) but doesnt understand the rest that comes with dysautonomia (breathing, sweats, fatigue etc) which is why I have made an appointment with prof mathias. Do you think he'll make me go through everything again??? I have kept a syptoms diary for the past month which I will email him a week before I go and I am taking him the results of my all my tests etc so hopefully this will save some time. Is there anything else that I could do before I see him? Not sure how many visits I will be able to make to London- its soooo expensive!!

Thanks for your help! Hope you're doing well!

Take care

Katie x

[Sophia3]

I have only heard about Professor Mathias when he was on the NDRF conference tape from a few years ago. I have heard only good things about him from NDRF and from another site where some people in England and Scotland post.

Plus, he is 'easy on the eyes!'. Not that that matters in a doctor, but on the tapes, he appeared handsome.

Best of luck in getting some answers and help.

[ben_uk]

Hi Katie,

It is a great idea to send through some notes about your symptoms prior to the appointment. That is what I have done. (The main reason I did it is because my GP letter was rubbish!).

I haven't seen anyone yet who understands autonomic problems. I have seen several neurologists but they just don't understand.

Which Cardiologist did you see?

I hope your appointment goes really well. The best anyone can do is to prepare a list beforehand so you don't forget anything.

Let us know hoe you get on. I will do the same.

Ben

[ben_uk]

Thanks for the info Sophia.

Hope all is ok with you.

Ben

[Sophia3]

Thank you, Ben. I am doing ok.

I forgot to mention that taking notes is a MUST for me ...my notes used to be longer in the earlier years --wondering what the H*** was going on in my body. Now I know just to note the top 4 or 5 complaints.

I would type out a list of my questions for me and make a copy for the doctor.

That way, I could just sometimes let him read thru it (when it was long) and we could expedite our way thru the list.

If I try to spit out each gripe verbally, I would tend to digress and ramble though my doc NEVER seemed rushed. but I just learned to be pithy with him as I learned more about my POTS. Then he and I could digress off my illness alltogether about something NON MEDICAL which can be fun, as well!!

So dont be afraid of asking TOO MANY questions if this is new to you..or should I say the WORSENING Of symptoms is recent for you. You deserve to be educated so you can become more comfortable with the confounding symptoms of this ever complex disorder!! No easy feat in the early days if my swiss cheese brains remembers correctly.

Keep us posted as to your outcome. Best of luck.

And like I posted to Jeanne, let your imagination and deep breathing gallop you through any testing!

[momofpreciousboy]

Good luck with your visit -just wanted to say that I went to a POTS dr, and my symptoms list was a page long and I was told it was "intimidating."

Anyone else had that problem? I really felt like there must be something else wrong if a POTS dr says that. It still bothers me to this day.

Good luck and from what others have said-he sounds nice.

But I was expecting way too much from my visit. So keep an open mind and keep expectations low so that you will be happy and not disappointed. Jennifer TX

[ben_uk]

Thanks Jennifer and Sophia.

I will not expect too much from the appointment (I kind of was, but not any more).

I get the feeling that we are more valuable to the doctors than vice versa - i.e. they can't do much for us but we form part of their research into autonomic disorders.

I am just hoping that he can give me something to calm down my nervous system. I feel like I have consumed 1000 cups of coffee. My chiropractor said my adrenal glands are in overdrive.

One thing is for sure - I am going to be VERY early for the appointment!

Thanks again.

Have a nice weekend

Ben