pollycbr125
Senior Member
- Messages
- 353
- Location
- yorkshire
I am posting this thread as I have a new diagnosis the following post is from a post I posted in the private section of the forum but I really think non members need to be aware and any medical professionals who may be watching the forum . I knew I was misdiagnosed and I basically had to become a medical detective in order to diagnose myself which has now been verified by the top expert in the country . Coincidentally on one of the facebook forums I am on someones daughter has also been diagnosed with ehlers danlos syndrome and POTS the same as me after being severley ill with what they beleieved to be ME for several years . coincidence ? or are many people labelled with ME not getting diagnosed correctly in the first place ? ...................
Hi everyone not been around much so apologies for that my health is really pants at the mo but wanted to share my good news I have a new diagnosis so nice to be proved right after all these years though it has taken me years of research in order to be able to diagnose myself .
I went to see the top proffessor in the country no more pissing about on the NHS and yes I have ehlers danlos syndrome type 3 and he also suspects I have POTS too which came as a bit of a shock as id sort of tried testing myself at home for that and had ruled it out as I didnt think the gap between readings was high enough though that was some time ago so that diagnosis needs verifying but with the symptoms I have and the deterioration in my health I think its probably right .
what the future holds now I have no idea my health really has gone down the pan however the feeling of vindication is rather nice wish I could bottle it actually
both ehlers danlos syndrome and Pots are both not very well known conditions so I may well be starting an even bigger battle who knows .
I don't think there are any services for either close to me so it looks like I will have to travel . There was a suggestion that I went into hospital in London for 3 weeks btbh going down for just the day has nearly killed me and I don't think I could bare to be away from my kids or the dogs for 3 weeks ive never been away from them that long theyve been away for a week at a time on holiday with there dad but 3 weeks thats a long time . Im also going to become a grandma in roughly 2 weeks time not that im gonna be the grandma that i imagined id be making sandcastles on the beach or flying kites on the hills but I still want to be able to spend time with her .
So im a bit in no mans land at the mo , also sad my Mum never got to know what was wrong with me . My sister went with me he thinks she also has ehlers danlos syndrome so she is going to get checked out properly too .
My Gp is in for a shcok but hopefully they will start taking me seriously now . Apparently I need a lot of tests so they probably wont be happy at that but I dont think they will deny me not after all the crap ive been through . we shall see and cross that bridge when we get to it .
I am so glad I am a stubborn sod had I not been I would have just accepted the ME diagnosis until I eventually rotted away . The ME clinic in Leeds told me unles I accepted the diagnosis I would never get better so glad I follwed my gut and not theyre bloody advice . The ME diagnosis has done me so much damage had I been accuratley diagnosed all those years ago I may never have deteriorated to the level I have .
I expect the report from the professor to be through in a couple of weeks ive made an appointment with my GP for next Thursday the moment I tell him will be like on that visa card advert PRICELESS
Hi everyone not been around much so apologies for that my health is really pants at the mo but wanted to share my good news I have a new diagnosis so nice to be proved right after all these years though it has taken me years of research in order to be able to diagnose myself .
I went to see the top proffessor in the country no more pissing about on the NHS and yes I have ehlers danlos syndrome type 3 and he also suspects I have POTS too which came as a bit of a shock as id sort of tried testing myself at home for that and had ruled it out as I didnt think the gap between readings was high enough though that was some time ago so that diagnosis needs verifying but with the symptoms I have and the deterioration in my health I think its probably right .
what the future holds now I have no idea my health really has gone down the pan however the feeling of vindication is rather nice wish I could bottle it actually
both ehlers danlos syndrome and Pots are both not very well known conditions so I may well be starting an even bigger battle who knows .
I don't think there are any services for either close to me so it looks like I will have to travel . There was a suggestion that I went into hospital in London for 3 weeks btbh going down for just the day has nearly killed me and I don't think I could bare to be away from my kids or the dogs for 3 weeks ive never been away from them that long theyve been away for a week at a time on holiday with there dad but 3 weeks thats a long time . Im also going to become a grandma in roughly 2 weeks time not that im gonna be the grandma that i imagined id be making sandcastles on the beach or flying kites on the hills but I still want to be able to spend time with her .
So im a bit in no mans land at the mo , also sad my Mum never got to know what was wrong with me . My sister went with me he thinks she also has ehlers danlos syndrome so she is going to get checked out properly too .
My Gp is in for a shcok but hopefully they will start taking me seriously now . Apparently I need a lot of tests so they probably wont be happy at that but I dont think they will deny me not after all the crap ive been through . we shall see and cross that bridge when we get to it .
I am so glad I am a stubborn sod had I not been I would have just accepted the ME diagnosis until I eventually rotted away . The ME clinic in Leeds told me unles I accepted the diagnosis I would never get better so glad I follwed my gut and not theyre bloody advice . The ME diagnosis has done me so much damage had I been accuratley diagnosed all those years ago I may never have deteriorated to the level I have .
I expect the report from the professor to be through in a couple of weeks ive made an appointment with my GP for next Thursday the moment I tell him will be like on that visa card advert PRICELESS