Just seen yet another heamo, oh lord!!!! - Hughes Syndrome -...

Hughes Syndrome - APS Support
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Just seen yet another heamo, oh lord!!!!


I have been diagnosed with aps after going round and round on the merry go round. I have now been told by her that she thinks I have vasculitus do you think this means that I havent got APS, the want to make their mind up! Really fed up and worried.

9 Replies

Hi there, sorry about this..from what I remember you already have a diagnosis of APS, so maybe this is just in addition, another labelled diagnosis, do you feel they are trying to help you, sometimes it takes a while, but you are over half way there with this..as diagnosis in full is often tricky, I know mine was. Mary F x

The problem here is that I cannot come to terms with APS until I am fully supported and things are outlined in a medical report to my GP I have already suffered from multiple small strokes TIAS culminating into a bigger stroke, I am overwhelmed with seeing different specialists even in London where I am now seeing neuro more tests, Lumbar, echo, nerve conduction tests and now only after 7 months of being placed in the support group ESA I am under review again! I shall lose my house if I have to go to a tribunal as I will just give up and walk away, I cannot do this being on my own. Mary is there any report that explains the symptoms of APS in a nutshell that I could send with my form? It would be very helpful as a supported document, I would just like it to be breif and to the point, many many thanks and regards for your input Traceylouxx

How come they are reviewing you again.I sent the symptoms information from the hughes syndrome foudation website.' What is it - symptoms'

Dont give up I know its hard when your by yourself but thats what the government wants - you todo it saves them money, but your entitled to it. Have you been in touch with the stroke association after my last stroke(jan2012) they contacted me and offered support wether its just someone to talk to or going to local support group meeting, they even arange transport for me to attend.

sharon x

traceylou in reply to sharonap

Discovering I was getting really poorly I eventually found out that I had been having multiple small stokes then a stroke I appealed against there decision this was in May 2011, I had already been given sick notes for stress related illness and eventually was placed in the wrag, then last november I filled in the horrendous form in sent loads of info and support letters and was moved to the support group, reveiw date nov 2012 just received another form to be in for August 17th, I do not know what more they could need, rang them they said this is normal, definitely not fit for work, specially with the volume of appts, particulary warferin checks. Should I just repeat what was said on the other form? Put it in different words? Do they want blood or should I say sticky blood??

Hi Tracey

As Sharon says, don't give up hon, it's what they want us to do! Not need the stress I know.

Hope you feeling ok today

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

vasculitus is a different medical issue

last year I attended 73 hospital appointments once every 4.3 days :( know what you mean !

They know what APS (hughes) is ! I have been told that they do nnot read supporting information I dont know how true this is - but all docs are read at tribunal review.

The forms are repeditive deliberately so - read and re read x

You can have vasculitus and aps, the symptoms are very similar so hard to tell which is which. If you are no different from last time write the same but if you have got worse included this.

when you where first ill was you on incapacity benefit, if you where and if they put you on wrag they have to pay the same amount until they catch up. I know the problem with wrag is its means tested.

Did not realise they kept reviewing you.

sharon x

traceylou in reply to sharonap

I have never been on incapacity benefit, when all this esculated I applied for ESA i asked them to look at my claim again after being told I had just suffered a cva in Feb 11(and placed in the wrag group) and my scans like yours showed multiple small strokes over a long period of time, I also had the livedo rash present and still have mostly on my hands and arms and it flairs below the knees. I was then reviewed for my claim in November 11 and and horray was placed in the support group, now as others am being reveiwed again I thout this would be in a few months time but received it a few weeks ago and I have to return it by 17th August, waiting for a report off my GP.

At age 49, after a 10-day hospital stay, I was diagnosed with Central Nervus System (brain) Vasculitis in 1998, presenting via stroke, which left me with an acute right hand tremmor, acute stuttering, (thankfully controllable with meds) slight right side face sag, weak left side of the whole body and minor symptoms. I was given 2 years to live. The cure of the time was 80 mg. Predisone/day. In six months time I went from 5'1" and 130 lbs. to 200 lbs of upper body weight including an unsitely hump on my back, standard "moon face" and a cherry red complexion. Honestly, I scared little children! Soon, I was prescribed over 20 meds which gave me diabetes. Followed by chemo (Cytoxan) which gave me bladder cancer that I am still battling. During that time I was also diagnosed with fibromyalgia and other automimmune diseases. I finally found the right rheumatologist who put together a LIFETIME medical history and tested for APS. Sure enough I came back with antibodies for cardioantiphospholipids. That combined with a sickly history from birth, many morphed rheumatic diseases, miscarriages, thromboplebitis during 7th month of successful pregnancy. When the scale hit 200 lbs. I called a mutidisciplinary meeting of all my doctors. I demanded to be weaned off all medications except for pain and comfort. No one had any objections and so we did. I got better and better, The diabetis disappeared. Bone and muscle pain depreciated some what. I was no longer confused ALL of the time and had coherent time to really make an educated decision. I still believe it was my best decision. Exercise seems to be the best remedy mentally and physically. I am on a Fentanyl patch; 100 micrograms over 72 hours. I take One 325 mg. aspirin/day. Vicodin and medical marijuana as needed for pain all under MD supervision. (I do not know Brittish politics on medical marijuana) I choose the marijuana as it eliminates an opiate (Vicodin) which, over long term, presents nasty constipation problems and medical marijuana also helps me eat and sleep easier. My doctors encourage me to take much more opiates than I do. I don't mind a little pain if I have complete, clear control. I have always been a control freak so to speak. And here I am, faced with all sorts of things I can't control!

APS was added in 2011. It explained so very much that I had never connected. An inability to carry a child was one I really beat myself up for. If I had known that APS was responsible it may have made it a bit easier psychologically.

The diseases have similar symptoms. I believe vasculitis is an autoimmune disease too. So, although different diseases, they run concurrently for me. They have now deemed CNS vasculitis (get this) quiessent. Means "quiet". Not gone, just laying in wait.The remedy is the same had they discovered the APS first.

For example common symptoms in APS and vasculitis are severe headaches, body aches, nausea or inability to eat, bone pain, word finding problems, general forgetfulness. Organizational problems. Other people get seizures and an array of symptoms each individual to one's case and other diagnoses. Overlapping diagnoses is still what is most difficult for me. It is hard for me to separate the pain to surmise which pain is coming from what. Another confuser to the two diseases is that all people may not portray all symptoms. Each is individual and usually complicated by additional disease. So if I forget something was it attributable to CNS, APS, my everlingering stroke, or turning 60 this year?

People also get it to different degrees. I'm a light weight compared to some of the people on this site! These women forewarn me that I might just be standing in their shoes next year or the year after? It reminds me to set an example for my kids because it's not all about ME. It sets an example of how to just go on. Education is a wicked weapon and I learn something new or read something that I just have to look up to learn more about every day I read this site.

Don't cross any bridges till you come to them concerning your diagnosis. It depends on how you need to be managed. You will adapt because the alternative is unacceptable. This is a wonderful support group. Use it and every other source you can find. If you understand something it is easier to accept it. Best of luck to you. I hope you end up being managed with as little meds as possible. I hope this confusing time passes quickly and you have better control once you have some answers on your case. I hope my story helped you understand a bit . If not, I am sorry for the length!

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