Sticky Blood-Hughes Syndrome Support


Bliemy well to update i am now taking 3 doses of 1200mg of gabapentin a day, on top of max co-odamol, and my other meds. Went to see consultant but saw a useless locum who couldnt understand why i was in a wheelchair at 27 i very curtly updated him on my lumber spine, & hip problems which affect my right knee, ankle,foot and toes, he had me crying in frustration by this point and my husband was like a very tightly coiled snake the nurse quickly rushed off to get the consultant before he left, unfourtently he didnt know my case history even though he has been my consultant for 5 yrs, he took me off warfarin onto clexane injections and a referal to manchester.

On the plus side i have got my blue badge (awaiting it to arrive) social services came round today to do an assessment (i was petrified) but it went well enough, my husband did most of the talking ( i have problems with strangers) they decided that i am not allowed to attempt to go upstairs any longer due to pain and balance issues and husband should not be lifting me or supporting me on stairs incase he has an epileptic fit as we would both fall, i have been given a perching stool for the kitchen, a commode and a raised loo seat as they are hoping the landlord will agree to rails, she has spoken to her manager as she doesnt think our house is suitable for our needs and as a result the manager wants to come and see us and a housing officer is coming on friday to see us, so now trying to have a rest and hubby is too after scrubbing the house top to bottom.

Haha goodness i carnt half ramble on..take care everyone x

6 Replies

Hi Becky

Sorry to hear about the rubbish locum, I do wish some of these very intelligent docs would learn to read notes and think about the effect there cavalier treatment has on us. Really not good to end up in tears and leave stressed and frustrated!

Glad your news is more positive with social services etc.

Hopefully the clexane and referral to Manchester will help!!

hope you feeling wel today.

Take care gentle hugs love Sheena xxxxxx :-) :-) :-)


Hi Beckyt, so sorry what you had to go through :(

What is it that docs' dont understand about actually treating us as human beings that actually have feelings & ARE individuals not a no. !!!!!!!!!!!!!!!!

Hope you now get what you go after & get the help needed.

Hope the referral goes well to.

Hope your hubby has recovered from all that cleaning! me & mine have been doing ours too today.....well he hoovered!!!!

Hope you are both now chilled out & forgetting how that unfortunate appointment went.

Hugs, Sue xx


Hi there, hope things brighten up a bit, this sort of medical behaviour makes me want to scream, it is JUST NOT good enough! Mary F x


Hello Becky,

I've always said being ill is just half the battle; the other half is dealing with difficult doctors. So hope the referral to Manchester is much better. Sending lots of good wishes to you from across the ocean.....

:-) ;-) ;-)


I totally understand your description of your husband coiled up like a snake, That sounds like mine. You would think it would be fun to watch your husband clean the house. But I know from experience it can be stressful watching and not being able to help. I'm also in a house with stairs and it makes life more challenging. My heart is with you and are hoping for the best for you.



Ok well housing officer came to see us, she agreed the stairs are a real risk to me and my husband, she feels we would need a level acess shower, she is passing our folder over to the medical officer to see what points we would be entitled to she said we can apply for adapted propertise but it might take awhile to find one suitable for us.


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