New to Hughes, but not really.

[VBAustralia]

Hi there...I have been battling my symptoms since I was 20. I have been diagnosed with MS several times, but my MRI's always come back normal. Next was chronic fatigue syndrome and fibro myalgia. Lastly is APS, which seems to explain all the misdiagnosis's over the last 17 years. A doctor recently mentioned shadow lupus, but I have never tested positive for lupus.

I am finding it very difficult to find doctors here who understand my condition and symptoms. They looked at me blankly when I mentioned feeling better the higher the INR? Aches and pains are put down to being in my head. There are so many mysteries to this illness for me. I have recently started on warfarin after years on Clexane and I have to admit its a struggle. Its so hard to be normal when I don't know what normal feels like anymore. Fatigue, aches and pains, feeling like I cant get enough oxygen all the time, its a struggle daily. Any insights you could offer would be helpful. I feel for the first time - it might not be in my head.

[MaryF Administrator]

Hi there and welcome, and firstly we have a lot from Australia on here, so I am sure over time you will find out who they see for this condition. There is some expertise apsaction.org/ on this list: There are also other professionals through word of mouth. The MS diagnosis is not unusual as some features are so similar and ncbi.nlm.nih.gov/pubmed/106..., dailymail.co.uk/health/arti...

Also, Hughes Syndrome often comes with as a trio of disease including Sjogrens Disease and also Thyroid problems, sometimes but not always this masqerades as Fibro.

The charity itself has loads of information, which may be useful for the medical professionals currently involved in your care. hughes-syndrome.org/

Mary F x

[VBAustralia in reply to MaryF]

Thanks Mary.

[MaryF Administrator in reply to VBAustralia]

A good contact is Dr Tim Godfrey, Melbourne...several have seen him, so worth contacting for advice. Mary F x

[Manofmendip]

Hi and welcome.

I second everything that my friend and colleague Mary has said.

A diagnosis of APS and not MS is wonderful.

May I ask why your Dr has moved you from Clexane to Warfarin?

Best wishes.

Dave x

[VBAustralia in reply to Manofmendip]

I was on Clexane too long and am at risk of developing Osteoporosis. As much as I hated the needles, I prefer the convenience.

[Manofmendip in reply to VBAustralia]

Hi. My understanding from Prof Hughes is that Low Molecular Weight Heparin, such as Fragmin, does not cause Osteoporosis.

Best wishes.

Dave

[Jade]

APs I recently had my thyroid tested and asked fir more than TSH but was told nothing else would looked at if TSH was within range, guess what, mine was. How can I get the other areas tested?

[VBAustralia]

I was fortunate enough that 14 years ago I was under a rheumatologist, Peter Keary who was treating me for fibro myalgia. He had a lot of patients with my symptoms and tested me for the clotting factors. 6 weeks later we found we were pregnant with our first child. He saved her life I am sure. So I was lucky that clots weren't prevalent at time of diagnosis, but since then I have had micro clots in my lungs a couple of times (not confirmed on a CT as they wouldn't do them), a little clot in my eye, and right now, I am pretty confident I had a TIA, but again, no testing done to confirm.

I have been on plaquenil for a while, and I think it works, but not enough.

[MaryF Administrator]

Also with Hughes.... often Thyroid issues and Sjogrens.. and often the Thyroid hides in under the 'Fibro' label, but not always, Professor Hughes often quotes the trio of disease which is Hughes/Thyroid/Sjogrens. Mary F x

[Jade in reply to MaryF]

I have fibro diagnosed by a Rheumy long before I got to St T's. Professor Hughes tells me to keep asking for thyroid, and GPs oblige but I always fail. It is so so frustrating.

[MaryF Administrator in reply to Jade]

Yes well the answer from APsnotFab is the right information and also joining TUK, many of us have been there and done this. Mary F x

[Lure2]

Hi,

I Think you should be glad to have a diagnose and that you are on warfarin.

You write you have recently started on warfarin. I am on it for life and selftest since over one year. It takes some time before the symptoms go away. It can be difficult to feel if you are in range but try to keep it there so you do not drop too low. It is more dangerous for us to have a low INR than a high INR.

I wish you all the very best from Stockholm. Kerstin

[Manofmendip]

Yes I agree.

[Jade]

I knew you had written about this so I specifically asked for T3 and T4, but was not entirely sure how to argue my point. The GP was being very helpful that day but said as her blood request goes electronically she cannot request T3 and T4 it is the blood people who look at it ONLY if TSH is raised. I've had many of the symptoms for over 20 years but fail TSH every time.