Finally got a diagnosis of Antiphospholipid syndrome.

[Billie-Jo79]

Hello.

So I had my long awaited for appointment with Dr Vanessa Martlew at the Royal Liverpool hospital on Wednesday. She was fabulous. She's so knowledgeable and very pleasant. She took my "Medical CV" from me, and was very patient when I explained that I have memory loss and had brought a 'prompt sheet' to help me remember what I wanted to say.

She completely poo pooed the fibro diagnosis and said she doesn't believe in it at all. I could have wept. BUT I didn't!! For the first appointment in God knows how long I didn't get emotional, I didn't cry, I didn't lose my way, and I was listened to. ☺☺ I have been researching and trying to find what is causing me to feel so poorly for 6 years, knowing I do not have fibromyalgia, fighting for diagnosis, I was told by by 4 doctors that I need to let it go, the MS specialist I saw at the Walton neuro centre told me I was needing psychiatric help and would talk my way into a wheelchair if I wasn't careful.( I do intend to send him a letter, along with my diagnosis) Yesterday, after 6 long years finally someone listened.

She was fascinated that both me and my Mum have had meningococcal meningitis. So anyway I will have an MRANGIOGRAPHY to check for suspected TIAS and once those results are back I'm to start on warfarin.

Ive got an urgent appointment back with my rheumatologist on Monday (never known an appointment be given so fast) and Dr Martlew has reccommrnded that I be started on Plaquenil for my exhaustion and joint pain. Im just hoping my Rheumatologist is not funny about it when I go on Monday. I really am suffering and I do need to be started on something for this tiredness. Im whacked. She was the one who VERY reluctantly referred me to Dr Martlew in the first place. She said she was only referring me because I have pulsatile tinnitus which stops when I press 8the jugular vein! I insisted I wanted to see a specialist in Hughes. She didn't think that I needed to have any aspirin or anything even following the positive Lupus anticoagulant test. I put myself on it. So I hope she's not annoyed to have been proved wrong and withholds the plaquenil based on that. You know how huffy these doctors can get.

I had a whole host of bloods done (6 vials!) All the thyroid tests, full blood count, vit D, c, can't remember the rest. Typical brain. Oh my renal re test. There were 4 pages.

Anyway I am so relieved.

Thank you so much for your help. For all the information you post here, without it I certainly would still be lost.

This place is a God send.

So very grateful. Mary, Kerstin, Abs fab. All of you. X

[HollyHeski Administrator]

Well done you, hope you feel better soon esp. now your on the right track.

[Manofmendip]

Billie-Jo

Great news.

Keep us updated.

Best wishes.

Dave xx

[Yllek]

I'm so very pleased to read this! This is the APS expert I'm changing to as you know lol!

I'm intrigued you had a similar experience to me at The Walton Centre. I was told the same as you and saw 3 neurologists there. I have since written and told them my diagnosis and had a positive response from them saying they were going to have a board meeting about me and how it could help others in the future.

Since the same has happened to you I would say please please please make sure you send that letter to them. Maybe the Walton centre of excellence will one day understand APS!

Glad you're finally diagnosed. I know the huge relief I felt and now feel very well on warfarin.

Kelly X

[Billie-Jo79 in reply to Yllek]

I'm under a pain consultant who I see every 6 months and have been for 5 years at the Walton Centre who still has this attitude. Me and my husband call him Severus Snape as he's so negative and depressing. Im looking forward to seeing him next time!

The MS guy was awful. I was so upset when I left that appointment. Annoying thing is I can't remember his name and had to send letters off to the DWP when PIP came in. I'll find out though.

Glad you are feeling well. Thanks for your good wishes. X

[Lure2]

I echo what is said. Please write that letter!

I am so happy for you!

Kerstin

[Billie-Jo79 in reply to Lure2]

Thank you! ☺☺ I intend to! Xx

[littlejune]

Thats brilliant I've got my first appointment book with Dr martlew for the end August I was referred to her by a consultant at arrow park. Im not on anything for my hughes syndrome and I feel like how you described x

[Lure2 in reply to littlejune]

Hi littlejune,

That sounds great. We do need a Doctor who is specialized on this illness.

Please let us hear how it goes for you and Good Luck end of August!

Kerstin in Stockholm

[littlejune in reply to Lure2]

Thank you kirstin i will do x

[Billie-Jo79 in reply to littlejune]

She's lovely. You have nothing to worry about. X

[Billie-Jo79]

My Mum did cry for me!

My and My husband were just about to start IVF when l got sick all those years ago. We'd completely given up hope of ever having children but Dr Martlew said yesterday that "We need to get a move on to get me sorted if we want children!" Shes so blunt its brilliant. Ive never felt like that coming out of an appointment before.

I'll be delighted just to get my life back and get out of this bed, but to even dare dream of a family is over whelming. I'd filed that one away under don't dare think,its too hard'

One step at a time. MRANGIOGRAPHY to get done first. X

[littlejune in reply to Billie-Jo79]

Omg I feel whatyour saying about starting a family we've been trying for eight years and im 35 now x

[lynzy]

Had probs with my internet and just caught up with your news. So happy about the +ve appt with professor martlew. i wouldnt worry about you being taken off plaquenil, as that dr referred you to her, im sure they already know the outcome of this appt. she is blunt, but she get things done, and isnt it nice when youre treated like a human being! Just one last thing, good luck with your hopes for a fmily of your own too. Keep in touch and were all thinking of you