Where to go for a diagnosis? - Hughes Syndrome A...

Hughes Syndrome APS Forum

10,336 members10,533 posts

Where to go for a diagnosis?

Cshimmon profile image
3 Replies

At present I have a diagnosis of myofascial pain syndrome and fibromyalgia, but I believe that my symptoms fit much better with Hughes- should I be looking to see a haematologist, endocrinologist or something else entirely?

Thanks

Written by
Cshimmon profile image
Cshimmon
To view profiles and participate in discussions please or .
Read more about...
3 Replies
jom277 profile image
jom277

Hi. I am also new and have exactly the same diagnosis as yourself. I too have myofascial pain and fibro. I found out when I was referred to the rhematologist. He had 10 different bloods taken on my first visit.

Three months later at my follow up appointment, he asked whether I had any history of thrombosis or dvts, I said no. He also asked if I had had numerous miscarriages, I also replied no. I have one child and never tried for anymore, so have been on contraception. This was all he asked and said that I have sticky blood.

As it had been 3 months since my previous appointment, he had the bloods done again, including the lupus one thats not for lupus.

On reading about Hughes syndrome, i noted that I too have many symptoms, similar to fibro but in addition a couple more that I had migraines in my youth and they have come back.

I am furious though, that although I asked the secretary to send my new results to my Gp as rheumy had discharged me, she still hasn't 3 weeks later. I saw my Gp last week and they said they are not experts on these types of bloods anyway, so I have been referred to the haematologists. Just got to wait longer now to get a result.

Cshimmon profile image
Cshimmon

I have a lot of the symptoms but don't really want to go into it too much without a diagnosis. I haven't had any dvt's though. I do also have a family history of thyroid problems as well.

Cshimmon profile image
Cshimmon

No my thyroid is ok, I just have a family history- and I understand that you often get related conditions like these in families.

You may also like...

Where do I go now?

depressed. Have suffered various symptoms for about 30 years. Last year i suffered a pretty bad...

Diagnosis

loss to understand why. The clinic mentioned Hughes syndrome as a possibility after this...

Confused with Diagnosis

here..i have tested positive twice in 20 years for sms which was low titre...through the years have...

Hoping for a diagnosis

Hi everyone, I'm hoping to get a diagnosis for my wife (F, 33). We have an appointment with our GP...

Finally got the Hughes diagnosis!

with Hughes? Did you have a clotting incident before you were diagnosed? Did you notice symptoms...