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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Hi all
Been to see the GP, my leg (particularly the left one) is swelling up a lot and my foot is puffy and covered in this mottled rash. The right one is also bad but not as grim as the left.
it has been like this and then suddenly I get this red and hot patch (not that I can feel it- neuropathy to thank there).
Plus I seem to have even more lumps appearing.
GP has had a good look, called in her colleague who went through my notes and asked about symptoms like fast heart, plus the addisons etc.
I have scarcoidosis. I have developed autonomic neuropathy and I have a lot of odema all over my body. It looks like I have some amyloidosis in my pancreas and adrenal glands possibly other places as well
The only thing to do is gentle exercise and rest. Lots of rest. Legs up bed rest type thing.
They have talked me through the very risky options ahead and that the alternative is some very strong changes to my home, my life and how things are around here.
Obviously the RA is awful- joints dreadful etc. CRP still in the 90s.
In their opinion the risks of the drug treatment for me (because of the multiple other issues going on) is too high but it is my decision.
they are going to write to the hospital to inform them.
I asked about the appt to see the surgeon and they have said to take on what he says with a pinch of salt because I have so many co-morbidities and none are currently controlled.
I will have to speak to my family, the gp is so lovely she says actually the thing you need to do is make a plan so the children are well supported.
I think I am going to have to ring social services and do the really serious care package thing rather than the 24hrs a wk I have at the moment.
Feeling like I need a hug and a cuppa tea!
Jenni xxhow to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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 Oh Jenni! Hope the hug helps. Wish I could do more. Lots of love, Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 331 Location: South London
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Dear Jenni
sorry to hear things have got so bad. I wish I could send you an animated hug like doreen but I sent you a psychic one instead with lots of kisses. Hope it helps.
Mari
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Rank: Advanced Member  Groups: Registered
Joined: 1/29/2010 Posts: 264
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Jenni,
So sorry to hear things are so aawful for you at the moment. I'll put the kettle on and send you a hug. Really hoping you can sort out some additional care hours so that you can rest and that things will improve.
Love and soothing tea drinking.
Sheila
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Dear Jenni Big hug much lv thinking of you sending you cup brew nice big mug,feet up some nice relaxing music. so sorry hear way things ebcoming more complex for you. lv melly cuddly cats make my world seem so much more fun
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Rank: Advanced Member  Groups: Registered
Joined: 12/5/2009 Posts: 216 Location: Leicester, UK
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Sending you a BIG BIG HUG and also Trudy Scrumptious sends a sniff, woof, lick  Ann x "I cannot do everything. I accept that. Not being able to do everything is no excuse for doing nothing." ~ Helen Keller
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 690
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Dearest Jenni, Oh NO not this, you've certainly had more than your fair share of bad luck, and wish I was there to give you a big hug. With my thinking cap on, I was wondering whether it would be possible if all of the medics involved in your care could get together and hold a multi-disciplinary meeting to discuss away forward, and agree upon, a treatment plan to help manage the complexity of the illnesses? I don't think that "to many cooks would spoil the broth" as the presentation of your illnesses seems to be very complex and is having a terrible impact on your physical health and social well-being. I totally agree with contacting SS and suggest that you should ask your GP to refer you for a comprehensive needs assessment, as SS tend to take more notice of a referral from a a professional than when one self referrers (I know it shouldn't be like this, but it is true). Anything that can help to improve the quality of your life and well-being is worth going for  much love, Barbara XXXXXX
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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It was lovely to talk. God bless, love and many prayers xxxxxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Cyber hugs on their way from me to you, Jenni. Sorry things are so very tough for you. Take care, Kathleen x
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
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Just for you Jenni  YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Thank you so much for your kind messages.
I dont know how to get these medics to talk to one another- the GP certainly was keen to try and set up a sort of meeting.
Will email and ask them I think, and about referring for extra care services.
Thanks again
Jenni xxhow to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Dear Jenni,
I am sorry to hear this shocking news, and I send you many prayers and hugs.
Barbara's suggestion is excellent- all the medics do need to communicate very carefully and properly over this and perhaps a meeting with you present (of course!) would be the best and most fruitful way to move forward?
Much love,
Amanda
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 872
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Smart thinking, Barbara - Social Services and primary care need to work together to arrange this well,
Do you have an advocate Jenni? This meeting needs to be well co-ordinated with YOU in the centre of things always - but perfectly possible - sounds a really good idea xx
I'm just putting the kettle on so we can share a cuppa via cyberspace xx
& Take care honey, you are not on your own - sounds like there are kettles going on up and down the country! xxxxx
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Rank: Member
Groups: Registered
Joined: 3/23/2010
Posts: 26
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Hi jenni, im sorry to hear ur so unwell big hug from me hope u get well soon lots of love tke cre Zakia xxxx oh im just having a cuppa on ur behalf lol 
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 561
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Big hug from me too Sophie x
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Rank: Advanced Member
Groups: Registered
Joined: 2/26/2010
Posts: 271
Location: hampshire
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Dear Jenni, sending you lots of love and hope things improve soon!
Heatherxxxxxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 259
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Lots of love,
Jan xxxxxxxxxxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Jenni, multi discipliniary meeting is an excellent idea. As for care package, that shouldnt be a problem. Its just getting it set up straight way, social services move slowly unfortunately!! so sorry you have all this Jenni, all of us are here for you, and sending loads of hugs and prayers, and endless cups of tea x BARBARA
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Rank: Advanced Member  Groups: Registered
Joined: 11/28/2009 Posts: 238 Location: North London
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Oh I do hope you get the help, and get the rest. xfx
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Jenni So sorry to learn that things are getting progressively worse for you. Certainly seems like it's time for a multi -disciplinary meeting. Without this how on earth are they ever going to get their acts together? They need to come up with some sort of effective treatment plan for these overlapping illnesses and unless they put their heads together it just won't happen. They will continue dealing with their own little patch causing repercussions for someone else's little patch on the way. If they carry on like this how can you be confident that you are getting a suitable treatment for anything? This is totally aside from the additional care you and your family now need. Is there anything NRAS might be able to do or suggest? I appreciate your perhaps unusual circumstances, but surely help from somewhere isn't a lot to ask, is it? Take care Jenni, wish there was something I could do to help. Lyn x
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