I became a double below knee amputee after a late diagnosis of Hughes Syndrome. If the diagnosis had been made sooner, I would have been put on Warfarin and would not have to live with this nightmare.
I was a very successful Driving Instructer and loved every minute of it.
I started having pain in my feet and calves in February 2004, at the age of 46.I was finally diagnosed with Hughes in March 2007, by which time it was too late to save my legs. I had blood clots in both leg arteries and they could not be saved.
After nearly 4 years of the worst pain you can imagine, and every test known to man, I made the decision in October 2007 to have my left leg amputated because I could not take the pain any longer. 6 months later, in April 2008 I had to do the same with my right leg.
Not only do I have to live with being a double amputee but also have many other of the symptoms related to Hughes. The constant headaches, tinnitus, memory loss, heart palpatations, etc etc etc. You probably all know these symptoms only too well.
It is said that everything happens for a reason but I am still struggling to find the reason. Maybe in time it will occur to me.
Written by
Carol-Barnsley
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I`m so sorry to hear of the horrific time you`ve had and the terrible damage done to your life by Hughes Syndrome. I cannot even begin to imagine the hell you`ve been through and are still going through. I`m so angry for you, that this can be allowed to happen.
Ooooh it makes me so cross!!
So much heartache and pain that doesn`t need to happen.
Sending you hugs and welcome to this site, I hope we can help, if you want to rant, unload, chat, we are here.
Do you get all the help and support from medical teams, etc now? I hope so,
I don`t know how you make sense of this, what the reason could be defeats me too.
I do know though that there are some truely lovely, brave, strong, compassionate people on here, who will help each other in times of need!!!
Take care, big but gentle hugs love Jessielou xxxxxx
Some days are better than others so maybe I will take up the offer to have a rant and rave some day soon.
I dont get any help at all with it to be honest. I am fighting at the moment to get an electric wheelchair for getting around my bungalow. I had to buy my own manual one as they only supply really heavy, useless wheelchairs.
At this moment in time, I am spraining my wrists frequently when transfering hence my urgency for an electric one. My first application got lost somehow. My second form was returned to my GP as they had not filled it all in, then that one got lost too. Third time I organised it by Fax, no excuses then. Now I'm told that I may not get one because I have my arms, albeit with badly sprained wrists.
This constant fighting with Nhs has nearly finished me off a few times.
Believe it or not I could not get a council bungalow for over 18mths. I was in hospital just having my second amputation when the council rang me to say they had a bungalow for me.
Glad to hear you not too far away, i live in leicestershire and meet up with suzypawz from staffs. Its lovely having someone who knows how you feel to chat too. Also glad you got dla sorted.
I think Hughes patients idea of hiring one, or borrowing one from disability charity is good one.
I was lucky and managed to get mobility scooter from ebay for 139 pounds, its only small and a bit tatty but it lets me keep up with kids, hubby and dogs, i used to be stuck at home or slowing them all down.
Sorry not been about today. Appointment at st thomas's. Hughes consultant, brilliant!! Take care gentle hugs xxx love Sheena xxx (jessielou xxx love
You welcome hon, Beeep!!!, they are so flipping useless. I hope they get a heart between them and get a decent wheelchair sorted for you soon. It bugs the hell out of me that you have to fight for everything.
I know you probably tried all this but Welfare Rights, Cab, Local council should all offer some support, help with benefits etc.Also voluntary organisations, will have a nosy round if you like, see what I can find.
I have an 11 year old son with autism and have had to fight since he was 2 to get help, moved counties 2 years ago and totally different. Not used to them saying yes, it`s scary.
Hang in there, you obviously a fighter, feel free to rant anytime, will listen.
Pm me if you like.
Take care hon, gentle hugs Jessielou xx (Sheena) xxx xxx
Carol - Hi! Really sorry to hear how things are affecting you. Just wondering, do you claim DLA? If so you can use the mobility part to get an electric chair. Most people think that it is just for getting a car but the Mobility scheme is also for wheelchairs. I know the downside is that you have to give up part of your DLA but in your case it just might be worth it, you would get the chair of your choice and everything will be paid for including insurance and repairs for three years. If you are not claiming DLA you should be.
Hi, Yes I do get DLA but I have a mobility car with hand controls fitted so at least I can still drive. it's just getting around the bungalow when I don't have my false legs on that's the problem. Thanks though for taking the time to listen.
Carol, I am so sorry to hear about the very traumatic and difficult time you have had to date, I do hope that we can all be of some help and support to you. Also I wonder if you now have the correct GP support in place to help you with any avenues which need to be accessed in terms of your care and future well being. There is a wealth of information, idea swapping and downright common sense on this site, peppered with good humour. Wishing you some solidarity and all the best. Mx
Hiya Mary,I cant say too much at the moment but my future care is with my solicitors and is due to go to court in the next few months. I just have to hold out untill then. Thx Carol
I am hoping to have a meeting next week with a group of people who work in and out of the NHS to find out how to do 'a national call to action' so that perhaps we can all do something about this sort of awful situation.
Carol If you only need this wheelchair for indoors could you not have a light weight second hand manual push chair. Mine works quite well with the manual wheels inside. Some of the newer light weight chairs are really light. There are a number of sites that advertise second hand chairs that could carry you over until you get something and then could keep as a spare. let me know if you need the sites but they come up in Google.
Also try your local red cross they will sometimes have a chair you can have for awhile and also this is just an idea. Local shop-mobility schemes will have to renew their stock - what do they do with their old wheelchairs (they dont just have scooters)? Perhaps contact them to see if you could do a deal with them.
There are a number of charities that recondition wheelchairs and give to deserving people, again you can do some research on that. Contact your local Lions Club - they are very helpful charity for helping people get info too.
Thank you so much for all the information. I do have a very light manual wheelchair that I had to buy myself. This has served me very well up till now, but just recently I have been spraining both wrists with transfering from the wheelchair onto the sofa, bed, loo etc. An electric one is what I need. I've been on the phone again today chasing it up, and (oh dear where have I heard this before), the guy thats dealing with it has just come back off holiday and has a backlog of forms to go through. It always seems as though things are against me. I must have killed a robin. I'll give them a couple more days then chase them again. If I have no joy, I will do so digging around to see if any of our local mobility shops can help.
oh hunny, I'm so sorry for what you have been through .
I too am very cross with the neglect of finding out what was wrong with you sooner & the constant battle you are still having for any help!! S***y N*S!!!!!
I wish you all the best to get what you deserve to make anything easier for you.
This is one of the reasons I am going to try for my area's group leader, as I see/hear of too many people that need support & just someone to listen to them I have already been trying to raise awareness around me so it gives people the knowledge of the first signs of this horrid disorder so people have the chance to try to catch it before it developes too bad........ooohhhhh it does infuriate me what ypou have gone through!!
I even go to the odd meeting for people with Fibromyalgia & letting them know about it, they too have never heard of APS, & that a lot of us get that too!
I hope you are ok & battling on......I understand it must be difficult but we are here for you to talk to or scream at! whichever...we don't mind xx
Thank you for your kind words. It does bring some comfort to know that I'm not alone here. Thanks for the offer of letting me scream, I do that quite regularly, I'm suprised you haven't heard me..
Hi Carol - I have been looking at this and given the fact that you will be getting your chair soonish....hopefully, your best bet would be to hire. In my area you can hire for around £35 a week and I would think if you took it for a month you could do a deal for cheaper, especially out of London. As I said before try the red cross, if they cant help have a real go at your GP and get them to call the wheelchair service to hurry them up, and all else failing consider the hire route or see if someone can lend you one. Even a local disability charity.
Carol my thoughts are with you and wow what a horrible time you have had. i hope you get the wheel chair sorted. let us know if there is a meet i will drive anywhere and have a catch up x
Thanks Hanna, I will get there with the wheelchair in the end even if I have to go through to the wheelchair centre and sit there without my false legs on and demand it. That would be a good laugh x
I am sorry to hear what has been going on and wanted to say that you have a wealth of support on this group and i can understand your issues on why me i have been in a wheelchair since 97 due to a stroke and beleive me it does get better. I would suggest you speak to your local disability information group for local advice and info isouthyorkshire.com/profile...
hope this helps you may regarding your wheelcahir speak to your occupational thearpist or social worker. We are having the same issue as yet again the wheelchair services down here have closed the list again for elec wheelchairs . The british red cross is a really good idea.
Hi there, thankyou so much for the advice. I rang again today about the wheelchair and have been promised they will ring me tomorrow. If I dont get any joy from them I will try the places you have suggested.
Yes they did ring, but only to say they had sent another letter to my GP to get more information. How much more do they need ? They know I've lost both legs and I've sprained both wrists. It gets me so angry that genuine people like us have to fight for the smallest things, yet if I was an alchoholic or drug user, the help would be thrown at me.
Hi, Guess what ? I'm still chasing the NHS for the wheelchair. It sucks!!!
They said they have had to send my refferral back to my GP AGAIN for more info. So on and on it goes.
I will let you know when I eventually get it sorted. I will probably end up doing what I've done for the past 4yrs, and buy my own. I keep looking on ebay at them to see what sort of prices they are going for. I may have to forfiet next years holiday to buy one.Thanks for caring.
You have had a tough time. Its not an easy condition, as it affects all of the body in many ways. I felt i had to reply , to let you know you are not on your own. I know the pain you are going through, it is not nice. I had a total knee replacement in 2010, and told my husband , that i wished they had amputated my leg. There is no easy solution with this condition. I hope this site helps you to be in touch, with people who are going through the same condition.
I still have'nt got the wheelchair yet, but had great news on Tuesday.
I have finally succeeded in winning my case. Can't say too much yet but will do as soon as I can. The main thing is I can go and buy a wheelchair now instead of begging to loan one from NHS.
Thank you, yes I will talk more about things later. I've booked myself a holiday to Gran Canaria in a week's time. As usual I worry about the flight, but not allowing myself to worry too much or I wouldn't go.
A week away will help me take everything in now that the fight is finally over.
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I have already been trying to raise awareness around me so it gives people the knowledge of the first signs of this horrid disorder so people have the chance to try to catch it before it developes too bad........ooohhhhh it does infuriate me what ypou have gone through!! 
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