Hi Everyone


#1

I'm just saying hi, no diagnosis but have a few symptoms that I havent spoken to anyone else about yet so I posted in the Symptoms section instead of putting loads of detail here.

 

 


#2

Can't be bothered going to look at your symptoms , welcome aboard 

Ian 


#3

Hi Littlewren,

Your multi-symptoms ( Iv'e read them) should surely have led to a diagnosis after ten years?

I'm slightly surprised at Idj's rather mixed reply of curtness and politeness as he usually writes some good missives.

Yours chirpily,

Jules77.

(Watch out for sparrowhawks).


#4

Aye aye joules 77 and little wren I had a long day and was looking through the forum and saw little wrens post no one had answerd and thought I would answer it but shouldn't have tried as I was knackerd , I had a look just now and think somthting isint adding up with you or the  doctors , sorry to say this but I would put my house in order first ( tell your oh everything ) honesty always a good thing . And then push the medical side until you get answers , hopefully you can then be at peace when you know what your dealing with , sorry but none of us on here have medical experience just PD . Good luck little wren I hope you get on okay , 

toraloo ian 


#5

Ian - In response to whatever you mean by 'not adding up' I can't decide what you mean.  Whichever way I take that, no, things don't add up, probably becasue I have a sleep disorder diagnosed, don't get proper or refreshing sleep, so when you turn up with each new sympton, a lot of what I am experiencing gets put down to non-refreshing sleep.  Like I also said, attitudes and reactions from GPs have at times eroded my belief that something else might be going on (I mean it still might not be!) so that might give you some insight in to my hesitance in making yet another appointment to discuss another symptom (yes, I know I'm not going to get anywhere until I do this, I'm just finding this a big step, ironic really, as there is actually something a bit more concrete for them to objectively observe now in terms of my arm).

I know no one can diagnose me on here, it was just a last chance to air things before I have to face yet another line of investigations.  PoTS symptoms are chronic and affect quite a lot of the systems in the body, digestion, blood pressure, heart rate, dizziness, heat tolerance, tiredness levels - I've been to the docs for each of these issues more than once over the years, and no one could tie it together, so even though I have this diagnosis (PoTS), I still feel a bit weakened by the whole thing.

I'll work things out though, I think I just need a few days to have a couple of words with myself and then I can annoy myself into doing something about it.


#6

The cardio nurses at the hospital explained that my story was very similar to the hundreds of other females of child bearing age who have been fobbed off by their doctors for PoTS symptoms, I also dont faint, I come near to fainting but I know the signs, I guess if I had, the enquiry might have taken a different path.  For example, asking your doctor why you feel horrendous after eating and they dont know so they do blood tests and they come back within range, to them means that nothing is wrong, someone trained in the signs of PoTS knows instantly what is happening (it is blood pooling in the gut to start digestion, leaving not much in other parts of the body, decrease in BP etc.) - honestly, it was a whole new world of relief when medical professionals knew what was going on and it had a name!

I'm pretty good at dodging the hawks, maybe that's part of my problem...!