How often is Hughes syndrome misdiagnosed for a conversion disorder...

[armywyfRN]

Since Hughes syndrome can present in so many forms and often confused with MS, how many have been told they have a conversion disorder or FND? One day I presented with trigeminal neuralgia that lasted for several days post viral infection, next I presented with stabbing, burning lower back pain with tingling at lower extremities and cold lower legs and feet, then I presented with aphasia and a TIA. Although it's noted I have APS, due to all my imaging being negative, I was told that I had conversion disorder. This was very upsetting.

[GinaD]

I can certainly relate to how upsetting the term "conversion disorder" is. If you have positive blood work and a history of clots -- as well as a diagnosis -- then you should be under the care of a specialist who is familiar with the many faces Hughes can assume.

And as far as stress is concerned, -- it works both ways. Stress can cause disease , butt also disease (especially lack of a dianosis or treatment) can cause stress.

Good luck.

Gina

[armywyfRN]

Thank you GinaD! I am definitely learning that...the hard way! My APS was diagnosed 7 years ago due to miscarriages and preterm births...I was never aware I had to continue with the blood thinning regimen until the recent TIA. I had pretty much been without symptoms until my body was fighting a virus. I am in the process of looking for a specialist in my area. I was very uninformed about the disease and what it can do. Now I am taking every step to educate myself. Again thank you for responding, it's good to know I'm not alone.

[Lure2]

Hi,

I agree with Gina. And you are absolutely not alone. Stay on this exstremely good site. Today on the tube I re-read "Understanding Hughes Syndrome, case studies for patients" by prof Graham Hughes. You should read it also.

Good wishes from Kerstin in Stockholm

[armywyfRN]

Thank you so much! Many well wishes to you!!

[GinaD]

Many of us become asymptomatic after childbirth --even after being diagnosed during a pregnancy. But unfortunately, once the immune system stores faulty data into the body's immune computer, that faulty data can be retrieved and misapplied at various times in the future. So, as you may find on this site, many of us can go years with no or few symptoms only to exhibit new or recurring symptoms later. It's frustrating.

Hughes. The illness that keeps on giving, and is known to wave and say " Hi, remember me?" at unpredictable and inconvenient times.

Since the disease also is fond of saying, " bet 'ya didn't know I could do this! Let me show you how creative I can be!" many of us are too familiar with the " conversion disorder," aka, " this one's a nutter," diagnosis.

Remember, the doctors are trying to help but the amount mis-information out there is

huge. Educate yourself. Try to get under the care of a doctor who has experience with Hughes. Arm yourself with printed documents from this web site. And always make bullet point crib sheets to help you organize your symptoms and questions when you visit the doctor.

It is a stressful disease -- especially due to the confusing symptomology. So the calmer you can be when visiting the doctor, the better for you.

Vent to us. That's what we do for each other all the time. ( remembering not to name names or shame anyone. )

You know, now that I think about this I have come up with a theory: " Conversion disorder"is often projection. The doctor is confused by the wide ranging symptomology of a disease that effects the wide ranging circulatory system. They become confused. Then stressed. So, they project that stress onto the patient. voila! " Conversion disorder." Problem solved.

[armywyfRN]

I'm smiling ear to ear, Gina! You are so right...you have eased my nerves about the conversion disorder myth! I might be off my rocker a little bit but I promise I couldn't make these symptoms up! This site has been comforting and reassuring. I have been making as many notes as I can and printing off facts from this sight. When I see my GP, I hoping for a referral to someone who specializes in Hughes!