A very sad article from The Telegraph

[MaryF]

I wonder if this family have Hughes Syndrome!

telegraph.co.uk/health/1036...

Mary F x

[jetjetjet]

sounds like what happened to me before I fired the jerk I had before as my pcp. I will copy that article and take it with me to next appointment with new pcp. thanks for the news

[jetjetjet]

You know Mary it's such a shame that this goes on . when will they start listening ?????

[MaryF Administrator in reply to jetjetjet]

Yes.. when I was pregnant with my first child 25 years ago, I went along to St Thomas' to express concern at my strange health since childhood....and that my father and my sisters had had multiple blood clots, I was listened to, and then ushered off politely with no action or real listening. However I did not take much notice of what I thought was bad information. A few weeks later both my legs starting hurting and I was back again, I was there minutes after the first symptoms, and told no swelling, still not listened to, however being a trainee mother lion and most feisty at age 24. I insisted on not leaving until something had been done. I was scanned and several clots found in each leg. However despite three pregnancies on fragmin, never told about Hughes Syndrome, being Sero negative of course! However my obstetric notes still remain in that hospital, apparently no needed as evidence now for the disease! Also clear now that I had untreated lupus for decades, (sero negative), finally only just passed a test despite obvious clinical symptoms! Mary F x

[BTR1963]

Sounds very similar to my first DVT. Doctor told me I had pulled a muscle, I told him I had played rugby most of my life and knew that this wasn't the type of pain associated with a muscular injury. He was very dismissive and insisted it was muscular. I went back 3 days later and was correctly diagnosed with DVT by another GP. There is a family history as my father had DVT as a young, fit, 28 yr old. Why do they take such risks? All they have to do is refer you to the local hospital. I'm pretty sure they wouldn't be criticised for erring on the side of caution.

[sbncmo in reply to BTR1963]

This story is a tragedy. However, BTR, being referred to the local hospital doesn't guarantee an accurate diagnosis either.

I came home one evening to find my husband having a TIA & I rushed him to the ER. The ER doctor ran tests on him, one of them being the d-dimer, and after getting the test results back the ER doctor sent him home saying there was nothing wrong. When we saw our GP a couple of days later, my husband could barely stand, he was sweating profusely in the middle of winter, & was white as a sheet. She ordered a CTscan - his lungs were saturated with blood clots & he was admitted into the hospital. He coded that night. He ended up losing 1/3 of his lungs. And the D-Dimer test? She said it read super high for clots. Our GP was furious with the ER doctor, as were we. I came within a few hours of losing my husband if our GP hadn't been on her toes.

My husband was always been a strong healthy man, never sick before this happened. This situation is slightly different in that my husband didn't start out with any DVT's - at least no sign of visible sign of them just like Helene. After he was hospitalized, additional clots were found in his groin. If he has any DVT's, they still never show up. He starts feeling them when they reach his upper body & start passing thru.

The ER doctor was dismissed from our hospital. I just hope he hasn't killed anyone.

It's good that you were familiar with your muscular aches & were able to distinguish between them & get the proper treatment. We still have some really good doctors out there.

[MaryF Administrator in reply to sbncmo]

Yes and thanks for your reply, we all learn from each other on here! Mary F x

[Helene]

I have had quite a few DVTs below knee and I have never had any redness, warm skin or swelling when having them, so no visible signs for a doctor to see. I wonder how many doctors I have met who have claimed that you can’t have a DVT without redness and/or swelling? And I have proved them wrong every time when the scans I sometimes have had to fight for, have shown I am right. I wonder if they still teach trainee doctors that you need visible signs to have a DVT, because that is more often not the case, I think I have heard that only in something like 30% of cases of below knee DVTs will there be redness and/or swelling.

Sad case to read about, unfortunately it probably will be cases like this in the future too.

[MaryF Administrator in reply to Helene]

Yes you raise a good point. Mary F x