Not sure if the above link will work but if not you can copy and paste into your browser. I was at St Thomas's on Wednesday and I saw a lovely consultant who has agreed that I can have the neuropsychological testing, Im really interested in what the results will show as I know Im getting worse. My dad suggested that I may be making my memory/spelling and language problems worse by worrying about it. My consultant also wants me to have my kidney and heart checked out again he wants to see whats happening with my remaining kidney as there was a lot of blood in my urine and he wants to check the blood supply to my bowel. He saw how stiff my joints are but as Im awaiting physio he has not done anything about that. I told him I think Plaquenil may be helping but as I had been resting over xmas Im not sure if its the rest or plaquenil that has been helping me.
Happy New Year everyone
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TJSTICKYBLOOD
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my fella al thinks i worry about language, memory etc and make it worse, but does make you very self concious and uncomfortable!!
I didn't take plaquenil for few days when we moved, silly!!! Bit did show up how much difference it has made, in terms of pain and fatigue. Is definately helping, thankfully!!!
I have had considerable cognitive skills problems with my APS for many years now and am under the care of The National in Queens square for the same I have had all the tests known to man and have yearly ct scans just to check if they can see any neuro damage however with APS although they know its a problem nothing ever shows on them my cognitive skills have progressively got worse Once I was an A grade student now I feel as thick as too short planks lol. I have asked on many occassions is this likely to progress and have been told no but I am sure it has become worse over the years !
They do say worrying about it makes it worse and sometimes I agree but I can suffer long spells of being away with the fairies and having to rely on family and friends to finish my sentences and tell people what I am trying to say - over Christmas this was particulary (spelt wrong ?) bad.
I could not pronounce my words at all what didn't help was I have a smart arse niece who finds great pleasure in taking the mic out of me as my former self I would have whipped her down with my tounge lol - but it was so bad I sounded like a bumbling idiot!
SO much so I have planned in my lucid hours exactly what I am going to say to her next time - I find writing notes to myself for doctors or important meetings good to keep myself ontrack and then If I am having a bad day then I can rely on passing the piece of paper over to speak for me - What day of the week is it ? I never know - the date is beyond me always
At my consultants appointment on Wednesday I have been told that there are some advances on treatment long way off but advances never the less - without pumping us full of ritoximab - My hospital have invested substatially in research and hey maybe not in my life time but my daughters there may be a way to manage this disease more efficantly - or with Gods help maybe a cure but that may be asking too much -
I even laughingly commented that I would be prepared to be one of those mice that are being used for stem cell purposes which rejenerates healthy cells
Plaquenil did work for me but after long term use I am not seeing as much benefit anymore - best thing for me is SUNSHINE but fat chance of getting that here
Hi there I can't have Plaquenil due to other things I have, psoriatic arthropathy, sjgroens, lupus and also hypothyroidism which also causes cognitive problems, I too feel clinically 'thick' and constantly forget things, leave words out, put the wrong one in.... or at times when very ill say whole sentences backwards... I try to keep my humour intact! instead of bad tempers... as it uses less energy! Mary F
Lol Im glad to know Im not in the ''thick'' club alone although I wish you all did not have the problem. Im not stupid by any means but my brain makes me feel like I am. I wrote won the other day instead of one .... oh dear.
I have a wonderful husband - but could do without my airs and graces niece but then again you can't have everything lol
On one of my psychological tests I was asked the definition of sentence I didn't have a clue !!!!!!!!!!!!! Burst into tears - also have problems with not being assertive - break down /lose my temper or just let people walk all over me -
Wondering I have major problems with paperwork letters come don't want to open them because I cannot comprehend contents or mis read or just don't want to deal with contents i.e got an appointment from camoflague clinic that I had been waiting for for years (illness taken its toll on my face) Read it 3 times read again before I left for St Thomas's took letter with me arrived for appointment 1 year and 1 hour early another time where I broke down into tears-
Started making complaint to British Gas over incorrect statement 6 months ago got a response in writing but haven't got a clue what it said still haven't opened the letter
Wish I had someone to handle these things for me !!! My husband if fantastic but this is the only thing in life he's not able to deal with
I started forgetting things and words a few years back and worried I was getting Alzheimers like my mother and grandmother. Then 2 years ago, APS was diagnosed and I was actually grateful to hear about "brain fog." Unfortunately, the warfarin hasn't helped my brain fog as it has for many APS sufferers. My sister has MS, my aunt and mother RA and thyroid disease, so APS and UCTD was a natural for me. This past year the forgetting of simple words for objects has me freaking out, and the image of Judi Dench's face in "Iris" when portraying novelist Iris Murdock when she realizes she can't remember the word during a broadcast haunts me. (Dench is too good an actress!) I'm pretty sure there's some connection between these autoimmune diseases and Alzheimers. At least money and research is being poured into that terrible disease-- too late for my mom who just died from it, but hope for me 5 to 10 years from now.
Hi TJ, great to hear you are still out and about. I'm pretty much house bound at the moment. I too am going for the neuropsych stuff. My hubby thinks I make myself worse by getting in a state about my mind and how it's working sometimes but I know the things I can't do anymore. Had a small hiccup with Bromley Primary Health Trust having to give permission for the funding to go to St Thomas' for Neurology which I thought was going to delay it even further (I've been waiting a year for this since the memory probs first diagnosed) but they agreed really quickly. My appointment is March.
Not worked now since October, Department doctors have put me up for medical retirement, bit sad about it but accepting that I can't do my job now.
Hi sharon thanks for the message I'm soo down today.Got turned down for DLA again which means tribunal here i come its so stressful and timewasting as I've won everyone I've been to its so ironic turning me down as I'm laying on my bed in agony and fit to do nothing
Hi sharon thanks for the message I'm soo down today.Got turned down for DLA again which means tribunal here i come its so stressful and timewasting as I've won everyone I've been to its so ironic turning me down as I'm laying on my bed in agony and fit to do nothing
Hi sharon thanks for the message I'm soo down today.Got turned down for DLA again which means tribunal here i come its so stressful and timewasting as I've won everyone I've been to its so ironic turning me down as I'm laying on my bed in agony and fit to do nothing
Hi sharon thanks for the message I'm soo down today.Got turned down for DLA again which means tribunal here i come its so stressful and timewasting as I've won everyone I've been to its so ironic turning me down as I'm laying on my bed in agony and fit to do nothing
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long way off but advances never the less - without pumping us full of ritoximab 
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I SUFFER WITH HUGHS SYNDROME
