Hsp

[Betsy87]

I'm 27 and was first diagnosed with hsp in 1994 and again in 2005 , In September 2014 I noticed I had large bruising on top of my leg an also on my left side of butt then I had marks on top of my feet I thought it was hsp bk . So I went to doctors he referred me to hemotoligist my bloods were fine and there's been no protein or blood in urine have sum spots not alot my joints are swelled as are my hands and feet I was wondering if any one else has experienced this I'm seein a rheumatologist this month I no it's hsp but can't understand how my bloods are normal an water samples clear I'm not in best of health my foot so swollen I walk on my tip toes .. Last episode in 2005 was vasculitus an I'm scarred my ankles were coverd in blisters which kept bursting an my kidneys are slightly scarred

[loobylou55]

I had HSP this time last year - ankles are terribly scarred - my inflammation markers didn't come down til a couple of months ago tho xx

[Betsy87 in reply to loobylou55]

It's awful isn't it hope your feeling well in your self

[amms43]

My bloods are always normal and my urine tests also but I too have the swellings and rash and sometimes feel very unwell and it is from the vasculitis. I would suggest a visit to the specialist who treated your vasculitis before in case you are having a flare and need treatment.

[Betsy87 in reply to amms43]

I remember bk in 2005 when I was we'll enough to go home I had to see specialist as out patient evry3 month until hsp cleared up but can't remember specialist I am goin to request my medical records bk from 2005 can I just ask did you finally get diagnosed with hsp as I'm finding it so frustrating nothin showin up In my blood water samples clear which is great but finding it hard ATM I'm going for X-ray on 10 th jan an then rhemutoligist 21 jan still coming out in bruising an joints an stomach pains hurt just need too get to the bottom of it thanks for your reply

[loobylou55]

My diagnosis came from the biopsy of one of the spots and the consultant believes it began when I had a sore throat. At the moment I'm really lucky as I'm feeling fine but I do check my legs daily for any new spots so we can catch any future flare up quickly.

[Betsy87 in reply to loobylou55]

I to keep checking for the spots have a few here and there my skin on my knees an surrounding. The knee are like purple motley lookin an just noticed 2 spots on my hand not on skin under

[AndrewT]

Dear Betsy87,

First of all Happy New Year 2015. First the good news, obvious really, you are still alive as am I! Your 'history' sound rather like mine- the age you became ill, your skin rash, your kidney problems. I was given hours to live, eighteen years ago, how about you? I have had a lot of 'kidney troubles'; dialysis for four years, a kidney transplant eighteen months ago. I have also had heart problems, brain damage.....I won't bore you, with all the details. I have only replied here so that you know there ARE 'others', a 'bit', like yourself frequenting these pages.

It only remains for me to offer you an enormous WELCOME, to our group.

Very best wishes AndrewT

[Betsy87 in reply to AndrewT]

Thanks Andrew you to have been through alot the episode in 2005 as it was vasculitus i was sick all time lost weight it took them 3 month to finally diagnose me again .. I think they found rash on my kidneys thts how I was diagnosed unsure so need to request my medical records from 2005 av slight scarring to one of my lungs to . Had ultrasound yesterday they couldn't see anythink but dr just wanted measurements from my kidneys I struggle alot tired all time my elbows are now starting to hurt an my legs are still bruised not much tho but around my ankles an knees they swollen alot an again they like a purple bruises but when I was seen at hemotoligist the consultant noticed my skin was so puffed up whn takin blood even my hands are unusual colour to rest of my arms I'm at a loss as nothing showing up in everythink I have had done I'm beginning to think its in my head but all my family see how dreadful I look I just don't feel right hope u are well tho thanks for reply

[AndrewT]

Dear Betsy,

I am also 'borderline', for Rheumatoid Arthritis-sometimes there IS a 'marker' present and sometimes there isn't. I wonder if you might be in this category yourself-it could well explain your symptoms-with nothing 'showing up', in blood tests. It may simply be that vasculitis is notoriously difficult to 'track down'. There are 'markers' which are far from always present, along with 'general symptoms' which may not always appear, dare I say 'and so on'?

Do you live anywhere near Cambridge, or can you get there? If so Dr David Jane, the leading authority, on vasculitis, is based there-incidentally he is also an advisor to our sister organisation 'Vasculitis UK'. Dr Jane, and his team, really are the people to see-they can recognise/diagnose a whole range of 'auto-immune' conditions. How well do you know/get on with your GP? Can you ask him/her for a referral or, failing this, ask your current hospital doctors/consultants? I have stayed under his team, even when I had the option not to- after all he is the leading expert in the country, if not the world.

Lastly, and importantly, Happy new year Betsy.

Very best wishes AndrewT

[Betsy87 in reply to AndrewT]

Happy new year to u Andrew thanks very much I have read other story's to I think it could b arthritis linked with hsp I have blotches on both feet an spots they odd ones here an there sum have faded but left marks I am from north east so wouldn't b able to see dr David Jane my doctor is aware of my situation but don't think he knows anythink about what I'm experiencing that's why I've been referred to hemotoligist bloods were fine so don't need to go there any more ,, my next referral was rheumotologist who I'm seeing on 21st jan .. And I'm at my gp tomorrow to talk about my ultrasound on kydneys ATM I'm on painkillers for pain I do have slipped disc but my other symptoms have nothing to do with tht problem even writing this now my hands have pins an needles an my eyes shake lasts seconds but I'm aware of my eyes doin that I have that many symptoms my doctor wanted me admitted but as you no there's problems with beds an hospital only looking at my records from 2010 thanks again Andrew

[AndrewT]

Dear Betsy,

Sorry that you are still having problems-and that you can't get to Addenbrooke's. One word of warning mind, and please don't take this the wrong way, be very carful what you 'read somewhere'. You would be surprised how many 'things' people 'have'- that they have 'read somewhere'. If you really do think that you have a 'new' condition then please speak to your doctors/consultants.

Once again, very best wishes for 2015.

AndrewT

[Betsy87 in reply to AndrewT]

Thanks Andrew an I haven't took it wrong way I understand wot your sayin ,,, I no I have hsp I'm not self diagnosing I have all signs an systems of hsp the bruises spots not lots of spots tho I went bk to my gp an he told me my kidneys were fine in relieved its worse on my left either my doctor needs glasses or it's in my head he sed my legs look normal as do my hands my left knee is twice size as normal and I struggle with getting my shoe on , 21 I see rhemutoligist but ATM am geting no where so I've asked for my medical notes frm 1994 to 2005 Iv got dr thinking its in my head I don't want to b like this I've 2 little girls who need me a hate been like This ,,, I'm glad I've got my family and partner who av seen me poorly seen the bruised swelling in my hands every time I txt I get pins n needles in one hand ,, I've took photos of my bruises my legs n hands etc feel like am geting no where my gp must think am making it up this made me really upset Andrew I'm at a loss as wot to do I told my mother yesterday did she think it's in my head she sed no absolutely sick now thanks for listening Andrew

[Betsy87 in reply to Betsy87]

I just hope I get somewhere with rhemutoligist ,, reason I've requested my medical records bk in 2005 it took them 3 month to diagnose me I'm unsure of how they finally diagnosed me now am not getting anywhere with my gp I have a large bruise across the side of my foot it was size of 10p piece now it's spread ...

[mitzymoo]

Hi My Special Jade Angel

I hope you get some help and relief from all your pain and suffering very soon, you've all suffered for far too long!!

I'm always thinking of you all.

Lots off gentle hugs and loads of angel blessings to you all and i'm sending some of my angels to take as much of your pain and suffering as possible from you to give you a rest.

Take care and angel blessings always

Deb XXX000XXX000XXX000XXX