Ehlers-Danlos Support UK

Ref Dr's appointment...s

Evening all,

I think i'm just looking for a little support, as i'm going to the Dr's tomorrow.....again!!

Although I was diagnosed with CFS in April last year, I was still suffering from chronic dizziness. I have since had a table tilt test, which confirmed POTS (although I am still awaiting the cardiologist appointment to discuss what steps we are going to take to manage it).

However, since looking up POTS I have come across Ehlers-danlos-syndrome. This condition, its symptoms and the impact it has on individuals, sounds exactly like me and what I experience daily.

I have made a Dr's appointment for tomorrow to discuss this with the Dr and have printed of the criteria to take with me to show him why I think this is applicable to me.

The thing is, i'm humiliated to be going back to the Dr's again. I cannot believe how many Dr's appointments, Ologist appointments, clinics, blood test, scans etc I have had in 16 months. I feel absolutely ridiculous taking up so much valuable time....just to try and get a full diagnoses of my symptoms and to find a way forward with my life.

It is the truest saying in the world......If you haven't got your health, you haven't got anything!!!

Sorry to take up people's time, but as you can tell I feel very down about more appointments....does anyone else feel the same?

Thanks kindly for reading my post.


1 Reply

Hello there.

I fully understand the roller coaster ride of appointments ,tests and diagnosis followed by yet more appointments.I have numerous conditions as well as EDS so it seems a constant merry /unmerry go round and having kids with multiple including Eds it does seem overwhelming at times but as health is so important it has to be done.I have found the best way is to accept it all and not think about it as not the norm as apart from being upset takes energy ,you need lots to keep up with it all, it also helps my kids and those around me to accept it and not get wound up by it.As for the GP bit remember if we were all tickety boo and healthy they wouldn't have a job! None of us choose Ill health so your health and you are important and worth the visits to protect and possibly improve your health.

Take care and sending you some smiley positive thoughts .


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