Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Last Piece of the Puzzle

I had forgotten you were in the UK... so we are even

Sounds like teachers over there have it more problematic with returning. Mentally my brother is not ready to return to the classroom with the virus issues in States.

I do think doctors now know much better how to combat the virus if infected, issue could evolve if cases keep spiraling that it overwhelms the heath care system and can no longer treat all the hospitalizations that are needed.

Stay safe!

Tim

Kat - Leicestershire. Know it sort of well. Have family up there, Seagrave and Saltby - plus my first rheumy, Dr Alison Kinder, Leicester Royal, who came with an excellent reference from fellow KA member (Strutsy). Consulted with Dr Kinder - still have all the reports and MRIs - then she went on maternity leave and I never got to see her again, then, I relocated to France in 2008.
In between I did get to consult with another very good rheumatologist, Dr Millicent Stone, (ex Canada) *also recommended by a KA member. Dr Stone was then living, working, down in Bath - I hopped over the channel to see her. Then she moved up to London. Sure do miss my very good rheumatologists.
Was most interested in your 'histoire'. Think I am running a parallel to you as sure ties in with my own experiences! So many years down the line, and going to have to sort, as beyond a joke now complete with a rectal prolapse. Ho-Hum. Got to find someone over here who 'knows' how to deal with the problem, as also, massive adhesions at the ilium. What a pair. Sigh.
Who are the consultants you are seeing Kat ? Dunno what I can do, but good information is always good information.

In my wee neck of the woods, we are not too bothered by the virus. Most people do not wear masks, but from the 1 Aug, masks will be mandatory in enclosed spaces, means ALL shops - our restaurants are open, so not sure how one eats wearing a mask...!! At the moment, mask when entering and leaving and moving around in the restaurant. Otherwise, masks off. Suppose that element of the mask wearing will continue in like vein.

I do voluntary work for an animal rescue charity. In charge of the books section. Just one day a week, which makes a break from being attached to the laptop - my umbilical cord <smile> A very small garden gives another break in routine. Still busy with it - might get it right one day...! No animals. Miss them all, but impossible in present circs, so help out friends when they might need a dog, cat, house, whatever sitter.

So one staggers on. Great catching you - take care, and, so glad you finally got sorted - can we clone your medical team ?? (When you see Strutsy, please do give her my best wishes. Tell her Angus is still with us.)
Big (((HUGS))) -
Molly C - Keeping on, Keeping on (as we all do, innit ?)

Kat -
Take a look at LDN - low dose Naltrexone. It has a good track record in dealing with Crohn's.
I found it efficacious for AS inflammation, and was on it myself for a number of years.
Here's the LDN website : www.ldnresearchtrust.org A wealth of information including trials etc.
Do keep us updated Kat - Take care, All Best Wishes -
Big (((Gentle HUGS)))
Molly C

Kat erreur... I put Saltby down for my nephew Angus, incorrect, it is Sowerby ! Brain fart, again ! Sowerby is near
Barrow-on-soar and also near Cossington.
Another brain fart, thought I had already submitted this, and only right found that I hadn't ! Ohhh errrr. MS brain farts methinks !
Take care - we are all wearing masks again in confined / public places.
Molly C1i- Keeping on, Keeping on

LOL Luckily the Queen already said we could stay!!

Molly it is good to hear from you. I wish I'd had someone like Kinder at the Royal. Sadly, that hospital let me down horribly. First rheumy tried to undiagnose me rather than sign my enbrel rx. Then she went on sick leave and I had nothing for 18 months except me phoning trying to get in to see someone (supposed to be every six months). Thankfully, me sitting in reception and weeping from pain got the rheumy nurse to get the prescription signed. I was finally assigned a regular rheumy who decided I wasn't worth spending money on for tests and so a degenerated disk in my lumbar went untreated for the better part of a year. MRI finally done, but not one follow-up appointment.

Dr Stone was a fellow for Dr Inman when I was first seeing him in Toronto. She helped second my AS diagnosis back in January 2002. After the fiasco at the Royal, I tracked her down to her private practice in London and had an appointment. She got me onto her list at Guys and St Thomas, where she was a consulting rheumy. Now, she's left the NHS and I'm with another new one, but she has been my husband's rheumy for a couple of years, so I trust her. I have a telephone appointment with her this morning.

I will absolutely say hi to Strutsy for you. We live not too far from her. And Lord Simpo is not too far away either, just south of us.

I'm glad to hear you are well and safe.

Warm hugs,

Please say 'Hi' to Millicent Stone for me. Would love if she were here in France. Basically she was the last rheumy I saw...years ago now. Do miss her.
Can't you see Alison Kinder at the Glenfield Hospital ? It used to be easy peasy to change hospitals in the UK. Only needed a referral, then bingo.
Now, what are you doing in England ? How come the move to ole blighty ?
Over here is sixes and sevens, with the govt making a crazed mess of going for Brexit, and now the Fr and the Brits playing tit-for-tat. So much nonsense - then add in the pharma games. One gives up on the whole bang shoot. Just hope that I don't have to return. Dunno what I would do; does not bear thinking about.
Oh, it is good to hear from you. Terrif. Keep well - and see about going to the Glenfield !

Warmest best wishes to you, Strutsy and Millie Stone - had an old colleague of hers and his wife, Helen, visiting over here a couple of days ago. Simon Waddington, headed up the radiology dept of Circle Bath. He is still there (my fave radiologist, superb.)
OK. take care - Big (((HUGS))) -
Molly C