Just Diagnosed

[rach73]

Hi,

I just wanted to update you guys and let you know that I received my diagnosis of POTS yesterday. Its taken around a year to get my GP to refer me for a tilt table test. I asked for a referral to a UK specialist and many of you private messaged me with Drs names. However as usual, my GP believed that my symptoms were all in my head and did it on the cheap! I was referred to a guy at my local hospital who is a specialist in geriatric medicine......I'm 37 lol!

The guy has a special interest in ME/CFS and POTS/ Autonomic Dysfunction. I first met him in November 2010 and to be honest didn't think much of him. My GP had reffered me to the wrong clinic and I saw him at the ME/CFS clinic, he spent the whole time trying to find out if I was depressed or anxious and if I had somatization disorder. So I then had to be referred again to correct clinic.

I was very surprised yesterday to find that this consultant would be conducting the tests and he was actually quite nice. He has a very dead pan sense of humour and you have to listen closely to what he was saying so you knew he was joking and not being serious. He put me at my ease whilst they had a few technical problems with the equipment.

I was tilted for 20 minutes and it was the longest 20mins of my life. I felt ill immediately on becoming upright and I felt like I couldn't breathe. About half way in I started wretching......not fun when strapped to a table! I didn't pass out but felt several times it was coming close. Thankfully I had to fast for 12 hours before the test so nothing in my stomach to come up but it felt awful.

I haven't seen any reports although I have been promised I can have a print out, all I can tell you is what I heard him and the student discussing. My heart rate went to over 150bpm on standing, I know for periods of time it was 130/140 bpm. I dont know what my blood pressure did. What amazed the Dr most was how it so quickly went back to normal when I was laid flat again. In his words "Its one of the most dramatic things Ive ever seen" and he gave me the diagnosis there and then!His words were "young lady you have postural orthostatic tachycardia" - he calls me young lady as when he saw me it was a couple of days after my birthday and I told him I was feeling old and unimpressed with being 37!

I was amazed as normally Drs wont discuss anything with you until they meet you in clinic 3-6 weeks later. He asked me what does it feel like, I told him on every movement other than laying flat it feels like my heart is going to come out of my chest.

Hopefully this will pave the way for me to get a referral for a diagnosis of EDS as I score over 5 (think its about 7) on the beighton scale.

Its taken 4 years to get this diagnosis and although I haven't experienced anything as bad as TeaRose's recent treatment - I urge anyone who hasn't read it to read it now, its been pretty horrific at times. I have persevered trying to get this diagnosis, even when told by my GP that POTS doesn't exist and its normal for your heart rate to go up when you stand up. I wouldn't have been able to do this without reading your messages that are posted on the forum or from the friends I have made on here. Special mention to Anna, who has been amazing when I chew her ear off on the phone!

So Thank you my POTSY fiends xxxx

Rach

[targs66]

hi Rach,

If you don't mind my asking, can you let me know the name/location of the doc (and the name of the correct clinic!) who specializes in ME and POTS/autonomic dysfunction? I'm also in the UK ... I have neurally mediated hypotension, which was diagnosed in the States. I'm seeing my GP on Monday; would love it if he would refer me to someone who's heard of these things!

Thanks so much,

targs66

[rach73]

Hi,

I have sent you a private message with details of who I saw and where I am based in the UK.

If you go on the Dinet website rather than the forum they have a list of Drs all over the world that specialise in this area, there are a few based all over the UK. The most famous being Prof Mathias who is based in London.

Rach

[E246]

Hi,

glad you have a diagnosis. It is always a relief when everyone stops treating you like it's psychological.

I am in the UK and was referred to geriatrics 15 months ago when they could not find what was wrong and wanted a general doctor. Then went through a private appointment with a CFS and Immunology Specialist. Really knew by then what was wrong but needed him to refer me to the right person.

Have been prescribed ivabradine which I don't think is available in US but it gives me terrible chest pain.

I have my second appointment in 10 days and was only diagnosed 6 weeks ago.

I am interested in anything that might be relevant in uk.

Thanks

[HopeSprings]

So glad you finally got your diagnosis. That must have been maddening dealing with the first guy who was looking for somatization disorder. I got that diagnosis early on and was thoroughly offended! I think these Dr's (especially older male ones) see how young and healthy looking we appear and assume it must be in our heads. I started on my quest for a diagnosis in my mid-twenties (I am now 38) and had a very hard time getting anyone to take me seriously. We don't want to have a disease of course, but getting that diagnosis is so mentally reassuring --to put a name to this thing that causes so much suffering... to understand WHY we have these symptoms. Well I hope now that you are officially diagnosed, there will be someone who can HELP you.

[Sallysblooms]

I am so glad you got the test and diagnosis. How awful that you usually have to wait so long to talk about results of tests! WOW.

[nmorgen]

Glad you got your diagnosis. I hope with treatment you start feeling better soon.

[rach73]

Thank you for your kind replies xx