Newly diagnosed from UK

[catmcgrath]

Hi!

I am 32 years old and have just been diagnosed with EDS III and POTS by Prof Grahame and Prof Mathias here in London. It is great to have found this forum as it is a lot to get my head around!

I have been recovering from a cerebral anuerysmal bleed and brain surgery 5 years ago which left me with some neurological problems and hemiparesis. I have seen many doctors as my recovery has been slow and over the past two years was labelled as having CFS and Fibromylagia and hypoglycemia! It finally looks as if the true diagnosis of EDS III and ANS dsyfunction has been made and maybe now finally they can do something to help me feel better.

I am going into the National hospital in July for the tests with Prof Mathias (what a nice man!) and wondered if any of you had had them and could tell me what happens as I am a little apprehensive. I think my biggest concern is that the ANS dysfunction treatment is a bit hit and miss and despite all the tests etc nothing will really change. It's really hard to imagine feeling this tired and ill for the rest of my life.

I stopped working after my anuerysm but am in the process of completing a MSc which I do part time. It's really hard but my uni are great and very supportive and it gives me something to aim towards in life which is so important especially when you can't go out to work.

Best wishes to you all

Catherine

[persephone]

Hi Catherine! I've been diagnosed by Prof Mathias (who I affectionately call the Messiah!) and Prof Grahame. They are really understanding. I too have EDS (III) and POTS. What's your MSc in? Which Uni? Are you from London?

I'm 23 and I'm from Bristol. I've just finished an MA at St Andrews and am going to Oxfor din October to do an MSt.

You're lucky that you had Doctors who knew what pots was. I had to fight my way to a diagnosis by using POTSPLACE myself, showing the literature from it to my GP and getting a private referral. I knew months before anyone else did that POTS was what made me faint every day in life, not any thing else!

I'm currently in the process of filing a complaint against a hospital where a neurologist tried to say I was suffering from a panic disorder. If you ever met me, you'd laugh at anyone who said I 'panic' about anything! I'm the archetypal loud one who laughs, makes everyone else laughs and is the life and soul of the party!

Glad you found us. how did you cope with POTS before you found POTSPLACE? without these guys, I'd be up a certain excrement filled creek withou a paddle! No one else really knows what it's like to suffer from POTS. I feel really welcome here and everyone is always so kind- they sympathise when I'm having a crap time, and celebrate the highs too...like when I got my degree a month ago

So...welcome! I'm glad more British people are coming out of the woodwork. I only knew of one other person when I first logged on. There are lots more now...there's me, Jame (guvna2004), Emmasuffolk, Felicity (from Dunblane), andI tihnk one or two others.

Another good resource for meeting British pots people seems to be www.hypermobility.org

That's the EDS/JHS site. It has chat rooms and message boards. I've found quite a few other people there, too.

So were you in London really recently in the National? Or did you se eProf at St Mary's? I was in the National 3 weeks ago for autonomic testing. I still don't have the results yet. They know I have pots, it would just seem that they haven't a clue why! though the EDS may go some way to explaining!

Thanks for joining us- I'm all excited now tha tI've met another UK faintly ridiculous person! Keep in touch, hope to see you posting here often!

P x x

Edit: I forgot to add- I've been where you are now. I was in a wheelchair 3 months ago and thought I would be that ill for hte rest of my life. It comes and goes though, waxes and wanes. The trick, I find (speaking only from my own experience) is to keep moving about. Even if I can only manage a potter in the back garden. The longer you avoid standing/mobilising, the worse your pots will become.

There are loads of treatments out there for you to try...I've tried betablockers and midodrine so far which work but only if I take them sproadically, as and when required, rather than all the time. Think of POTS as being like migraine- it would be impossible (I think) to suffer a pounding igraine evrey escond of every hour. It comes and goes, and can be controlled. That's how I view my situation. My POTS definitely gets worse with my period. I just need to try and adjust things accordingly- i.e- on the first day of my period, don't try and run up a flight of stairs. This would be suicide!

Hope this helps.... Message or mail me if there's anything else you want to ask about...

[MightyMouse]

Welcome Catherine, I'm glad you found us

I have EDSIII, POTS and NCS too. It sure seems that we've gotten a whole host of new members from the UK in the past few weeks!

Nina

[Felicity]

Hello and welcome.

I'm very new here too, have been diagnosed with POTS for about 6 months. I'm 36, and I've been off work for about 8 months now with POTS. I haven't found a medication that helped yet, but there are still a few options. I asked my cardiologist yesterday about seeing Dr. Mathias - quite a trip for me from Dunblane in Scotland, but it might well be worth it. I'll be very interested to know how you get on.

I don't think I can give much helpful advice. I also have the 'how can I cope feeling this drained evermore' - I used to be very active and it is hard. On the bright side, I've got much better about managing my life to minimise the effects, and I often have an hour or so a day now where I don't have the overwhelming urge to lie and do nothing. I try to keep reminding myself that it may get better, also I now really appreciate the times when I do feel OKish. Just now I'm spending most days dozing in the garden (sunshine in Scotland!) and although there are a million things I would rather do, I guess life could be worse :-)

Felicity.

[MaryJo]

Hi Everyone,

I am 31 and from London. I guess this is handy for the specialists!!!!!!!! I am under Prof Grahame (I've EDS III) and Prof Matthias. I was diagnosed last year after spending 15 years being diagnosed with M.E.

I had the tests done at the National which confirmed that I had POTS and NCS. Prof Matthias told me to increase my salt intake and to try the counter-manouvres. He seemed reluctant to try medication because of the side effects. I am badly affected with both the EDS and the POTS. I had to take 6 years out from my degree in law which I have just completed at King's College London (and hopefully passed!). I am often really exhausted, in pain and can not think straight. I used to have a sharp brain, but there are times when the brain fog is impossible. I was planning on becoming a barrister, and got into bar school 5 years running, but could not continue due to POTS.

The tests are not too bad, and the team at the National are really nice. The scientist who conducted my tests told me to let him know if at any time if I felt bad and he would stop. I did not find there was anything to worry about, and the results come through very quickly (I think about a week afterwards). Prof Matthias has left me with an open appointment. I am thinking of getting a referral back onto the NHS to see him at least once a year as I feel a little bit left out there to face it all alone, and I need to be monitored. Has anyone else been effectively discharged despite having positive tests?

Anyway, it's great to hear from others in the UK who are under the 2 Profs, especially those of us who are trying to study. Well, I did say trying!!!!! HA HA!

[DancingLight]

MaryJo, Catherine, and Felicity!!!!! WELCOME!

here i am posting at 5 am in the morning and thinking, hey, MaryJo and Felicity are up...they must not be sleeping either! but, duh, you are in another time zone!

Welcome to all of you. I continue to be amazed by this site...and love that we have a growing international community! I studied abroad in England and visited Scotland, Wales, and Ireland then...oh, how I wish I could travel like that again!

I wanted to welcome you all here...

Catherine...your question...finding meds/treatment IS very individual, and can take a lot of patience b/c it is so much trial and error.

Okay, I'm gonna try sleeping again now...

Emily