Atypical symptoms to APS??

[traceylou]

I wondered if anybody else encounters the frustrating problem of when you see your specialist and give your account of the health problems and everyday symptoms of Hughes, you are told that it is not normal??? Particulary if you are on meds for it that something else must be going on-how frustrating....

[MaryF Administrator]

Hello there, I am afraid this is a problem for many of us, there are many medical papers written which explain how widely the condition can affect people, and also many of us on here are sero negative, having had serious serious clinical incidents. The reliance on blood tests being the only diagnosis at times has put many of us at risk. Like many conditions, thryoid included, blood tests should really only form part of a diagnosis, albeit they are very very useful and often accurate in some cases. If you have a medical team who are well on the condition and up to date, this helps, however if you do not have the luck to be close to that sort of expertise, it can make the path to diagnosis a bit longer!. Mary F x

[jessielou]

Hi Tracey

I think a lot of us get frustrated with docs that don't know that much about Hughes. I know you probably looked at Hughes foundation website, but may be worth printing some info off, hughes-syndrome.org. Hand it to docs. We know how many symptoms we have in common, maybe they will learn, sadly I think we have to teach!!

I'm sorry if this doesn't make much sense, am a bit muddled tonight.

Take care gentle hugs love Sheena xxxx

[Manofmendip]

Hi Tracey

Yes, I have found the same including, recently, my latest neurologist who said that everything these days seems to be blamed on Hughes Syndrome.

As Jessielou said we have to educate these Drs to understand us; not an easy task with some of the more arogant ones.

Best wishes.

Dave

[GinaD]

I'm tempted, very,very tempted to jump at my next opportunity to use this line on the next ill informed doc: "Well you know doc, you are right. There are so many systems and areas of the body which are completely independent from the support of the closed vascular system! Any interruption in blood flow to those systems should have no effect whatsoever!".

[jessielou]

Hi Gina

Hope you don't mind if I borrow that, next time some patronising arrogant member of the medical profession says ooooh I don't think that's anything to do with Hughes!! And oooooh errrr what is Hughes syndrome!!!

Sure they could use the Internet and do some research!!!!

Take care gentle hugs love Sheena xxxxxx

[SueLovett]

I agree with what Mary has said.

It would seem that the 'so called' experts can't always get past their list of expected symptoms and 'Listen to the Patient'.

The more I hear from fellow members the more I realise that there are an array of symptoms that rear their ugly heads not just those that are expected.

Also contrary to what is often written, even by Prof. Hughes, Thinning the blood is not the expected panacea for suddenly feeling miraculously better!

x Best ranter in the world.

[swirl]

I always feel tired and now not only my body is tired, my mind too. I can feel my brain doesn´t go as fast as before, and my memory is getting worse. Sometimes I fell like I'm out of my head and really strange sensations. It´s starting to cause me problems at work. I told my internist about, and after making me thyroid ultrasound, heart ultrasound, blood test,...etc.....He told me that my fatigue hasn`t an explanation....He doesn´t think all of these things are because of hughes. I feel like a crazy girl .....it´s very very sad and frustrating. (SORRY FOR MY ENGLISH BUT I'M SPANISH)