Been to the doctors but she missed the point. Anyone?

[xxkellywxx]

Hey all! I was diagnosed with Hughes last year, because of my three miscarriages I have been having increased symptoms like memory loss, tingle sensations, blankness, dizzy and numbness. I have been to the doctors today and explained everything but because my symptoms can mean other things she said she don't think it is down to my sticky blood, she stated that even if I do take aspirin I won't feel it's effects. I have done my research and many of you know that these can be symptoms too. I have been referred to see a neurologist but I have to have bloods taken to rule out any other reasons why I have the symptoms. Anyone else feel like no one takes you seriously? xxx

[jessie05]

I have the same problem, the same symtoms the rheumatologist at the hospital who was testing me for hughes last january told me not to take aspirin after my mcs unless I fell pregnant again so I am on no medication I dont feel well and I have this awful lump in my neck I was diagnosed as having hughes, I am pretty fed up I know there are some brilliant drs who help people with hughes cant find one in the north east. Sorry I couldnt be of any help, guess we are both in the same boat, hope you feel better soon.x

[Willa in reply to jessie05]

Northeast area doctors - Ann Parke - studied with Dr. Huges; Dr. Thomas Greco. Drs. Parke and Greco are both rheumatologists who specialize in APS. They also research APS. I think you need a referral from another doctor, but you could call their offices. Good luck.

[jessie05 in reply to Willa]

Thanks very much ive been looking on the internet for specialists in the north east and havnt found any so this is such a relief, Ive wrote these down lets see if I can get a referral.x

[Tonkawoman69]

Hi,

I think a lot people feel the same and feel like we are not taken seriously. It is very difficult to get the right answers. I had a rheumatologist who really didn't take me seriously and misdiagnosed and rude etc . I could go on but point is I'm now left in no mans land as was discharged and have to go through a new referral. I have complained for many other reasons as well as the above about his particular consultant. He has delayed my treat went and I'm suffering bad with Lupus and Hughes symptoms. Stick to your guns and persist, they will eventually listen as it don't just go away. Eventually you will find someone who will listen.

Andrea x

[jessielou]

Hi hon,

What you're describing will have lots of us gnashing our teeth, so many of us have or have had the same issues with members of the medical profession!

Have a look at the hughes foundation website at hughes-syndrome.org there's loads of info on their you can print off and take to show docs etc..

Maybe others on here will know of a doc in the north east Jessie.

it shouldn't be like this but sadly we have to be our own advocates in keep pushing till we get listened to.

Hope you doing ok today and the sun is shining where you are.

Gentle hugs love Sheena xxxxx

[LipsNClips]

Story of my life, friend. Even if you find someone who understands, they usually aren't willing to treat those symptoms. At my last appointment, the specialist said, "Even if your levels (blood test) are off the charts, what do you expect as treatment?" I really didn't have an answer. I don't want to go on anti-coagulation therapy for the rest of my life if I don't need to, but if it will prevent more serious events, I would.

So, for now, I do what I can to be as healthy as possible, take an aspirin a day, and try not to expect something worse to happen. I suppose I'll do this until something better comes along.

[jules69]

I had a similar problem, had recurrent DVTs and specialist told me to take warfarin for life, i asked numerous times what was causing the clots and felt like i was getting no support or answers, after being admitted to hospital numerous times and work being "less than understanding" i ended up back at my GP not expecting to get any help as it was a different doctor to my regular one. How wrong was I, she was wonderful, went through all my history, agreed that the service i was receiving was wrong and would refer to another hospital, 3 appointments later and i've been diagnosed with Hughes, even though i had been under the previous specialist for a year with no understanding or support far less a diagnosis. I would recommend going back to your GP and asking for a second opinion.

[Tiggercat]

I keep reading of the problems with diagnosis that you guys seem to all have. It makes me realise how lucky Derek was. He got 1 DVT, they did blood tests, put him on warfarin for 3 months, stopped it for 6 weeks. Second round of blood tests, called us in and said "You have Antiphospholipid Syndrome".

They gave him 3 options, do nothing and take a risk, take asprin and reduce the risk slightly, take warfarin for life (or until in his 70's) and reduce his risk of another event 10 fold.

He took the warfarin option and had a CAPS event 3 years later. LOL.

Hate to think what could have happened if he took the "do nothing" option.

It was an English Dr that diagnosed him, and I believe that Dr is now back in England. His name is Tim Patterson, he was General Medical Specialist.

[jules69]

The specialist I saw at Castle Hill Hospital was Dr Allsup, this falls under Hull Hospitals, hope this is of some help to someone