5 years on !

[bathouse]

Hello, I had issues that started 5 years ago, I did post on here then.

In brief GP thought I may have MS

Symptoms- balance issues, extreme fatigue, pins and needles left side of face and back of neck, occular migraines.

Brain scans showed 5mm hyperintence focus in right frontal lobe subcortical white matter? Small focus of demyelination and non specific scattered white matter lesions of unknown significance.

neurologist said not MS , I thought hughes syndrome as I have had 1 prem baby then 4 miscarriages then stopped trying.

After a battle got to go to the appropriate team team at guys and St Thomas, told my autoimmune screen was normal.

I put myself on asprin and have had some improvements but still fatigued and muscle/joint pain. My optician referred me (last year) to ophthalmologist for severe dry eyes and was put on FAB trial (really helped so now on daily treatment) and punctal plugs.

Ophthalmologist did autoimmune screen as he felt it could be (I am hypothyroid) my ANCA IIF came back positive, he referred me to rheumatologist, she was hopeless, did not listen and as soon as I said I was seen 5 years ago by the team at St Thomas, they said she would not disaggree with them! That was 5 years ago! We did not hit it off, I got her to repeat autoimmune screen. She wrote to say all normal, I got a copy of the results and the routine bloods were back but not the autoimmune screen ( it was to soon) I wrote to her saying how could she tell me my bloods were normal if they were not back, some months later I have had a copy of bloods with a sarcastc letter saying ALL NORMAL, i looked through them , no repeat PANCA and my IgG Anti-cardiolipin is raised 22.5 (0-12.1) repeat in no less than 12 weeks to confirm persistence, she said all normal!!!!!!

Seeing GP tomorrow

Advice please, and who would you recommend I get referred to with my history/results?

Thanks in advance

Sue

[MaryF Administrator]

Hello, Firstly sometimes appointments don't go the way we hope to and at times this can be frustrating. Over on the right hand of the forum under 'pinned posts' you can see our NHS specialists and some private ones. Also some on here: ghic.world/

It is common with this condition to have the trio of disease that Prof Hughes regularly writes about, regarding Hughes Syndrome/APS, Sjogrens and a Thyroid problem. Also add to this when patients have adequate testing often their Folate, Ferritin, B12 and D is low. It is important to address everything.

If you feel you would benefit from a couple of private appointments, which many of us have had to do, to get our NHS care back on track, then personally I have been to London Bridge, The Lupus Centre, there are quite a few doctors there who understand the condition fully, Dr Kaul works there, and is also working in the NHS.

Perhaps you need re testing and starting with a new team if you are not feeling confident about your care. A lot of us have been in this position.

MaryF

[bathouse in reply to MaryF]

Many thanks for your quick response.

I paid privately to go to London bridge in May 2015 Dr G Sanna, consultant Rheumatologist, he would only give a diagnosis if bloods were positive.

I dont want to waste another £230 plus travel costs.

Thanks

Sue

[KellyInTexas Administrator in reply to bathouse]

Sue,

I do think you will need to try privately again.

Some Doctors, even within the London Lupus center itself, have differing opinions on the result thresholds of the antibody titers for diagnosis. The doctor you saw is known for being a sticker for high titres. You are not the first patient of his to have this issue.

I highly ( highly) suggest you see another dr. In this group. Dr Natash Jordan is my specialty APS Rheumatoligist.

Do you know how far I travel to see her? All the way from Texas!

Now I have DVT’s ... lots and lots despite aggressive anticoagulation. We are all different - miscarriages... and my bloods came back positive twice in a row the twelve weeks apart- but I think 24 was about my number also. But it goes to show we can clot despite persistent and high titres.

Just food for thought.

[bathouse in reply to KellyInTexas]

Many thanks for taking the time to reply.

I will consider going privately again, I’ll get my GP to re do the bloods and get the results before hand.

Texas, wow, now that’s a trip!

Best wishes

Sue

[Ylmom]

Getting a dx and treated can be hard and frustrating! I was testing positive for 2 of the antibodies with symptoms and couldn’t get help. I was very scared and frustrated. I even considered going to the UK to see if I could get help there...also a long rode trip😆. But I was desperate. I finally found someone who took me seriously and treated me. Keep pushing for answers!

[bathouse in reply to Ylmom]

Many thanks, glad you got help, I’ll keep trying 😁