A tough patient journey - from The Wa... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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A tough patient journey - from The Washington Post




10 Replies

I really liked this article, thanks

Very good.it does teach you to not try and be too tough on yourself and seek help from a doctor

Ow. Thanks for sharing.

We ARE survivors!

Can you access the article without subscribing to the Post?

Yllek in reply to Holley

Yes I didn’t have to subscribe x

Thanks Mary. Now more people are aware of Hughes Syndrome.

Interesting story.

On the more negative side, whatever her gut feeling about her symptoms, without the calf swelling I doubt she would have been taken very seriously or diagnosed correctly. Not in the UK GP system anyway. Going in with breathlessness, exhaustion, and nausea/retching in my experience would not get you more than a 'come back in a few weeks if it doesn't stop' kind of response. Going in with strange symptoms myself, for example, the locum GP said: "Well, what do you expect ME to do about it?"

Apologies if this sounds critical of the medical profession who are usually doing their best under very difficult conditions. The reality is that it can be very hard at times to be taken seriously or get a correct diagnosis, especially when symptoms are vague and episodic. I think this has to be partly why she toughed it out.

MaryFAdministrator in reply to Frodo

I will add to that, that so many of us have problems with B12 and Thyroid, the NHS does the one test for B12 which often only seems to pick up the supplement you are taking if you are, (the banding for test results very narrow), and also Thyroid testing, only the one test the TSH only, when I test and pay for my tests I do many tests, which is how I found out what was going on with myself and my children beyond the diagnosis for Lupus and Hughes Syndrome/APS, and even then GP's are irritated when you arrive with your results for more detailed tests. MaryF

Hits a little too close to home. I had a chronic headache for two full weeks but kept taking Tylenol and hoping for the best. I excused or rationalized every symptom. I used a neti pot because I thought it was a sinus infection even though the pain was all over and not around my eyes like I usually get. Finally, at the encouragement of my husband, I ended up going to see my primary care doc on May 3rd. May 5th I was at a neighbor's Cinco De Mayo party. I mentioned to my friend that I planned on going to the emergency room the following day to get checked out. She said she would take my son for a playdate. Little did I know that I was going to the emergency room for an actual emergency. I had a stroke on May 6th. I didn't even have time to get the results of my PT/INR and have the MRI done that my primary doc ordered.

Apparently, I hadn't had my INR level checked since January (the neurologist pointed out)!!! I was so focused on my son and his issues (ADHD/Mood disorder/school), that it had totally slipped my mind to get my bloodwork done. I keep a log on my phone and it validated what the neurologist had said. I learned an expensive lesson in more ways than one.

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