new here

[alex.mc]

:mad: Hiya, I'm new to this site, just been diagnosed with lupus. been back and forword to the docs for pain in my legs and arms the pain was so bad sometimes i just didnt want to get out of bed. then the rash came just a little patch went to the docs said well it was fungus. it was fungus for 20 years the pain in legs and arms well the docs didnt have a clue so off i went to hospital to have my cartiledge removed. things are just as bad the rash well it on both sides of my face now im told i have lupus
well the things im told what can happen. the part of the body it effects when i told my wife well she went on the net now she thinks i will have a haertattack or something can anyone help me to explain it to her well and to me any advice will be greatful i see it most common in woman im a male aged 38 can anyone help



p/s sorry if i sound a bit angry i have been told onething for 20,years now its something else i just dont have the strength left to fight a another 20,years so all the help u can give me will be most greatful

[Bullwinkle]

Hi Alex, and welcome to the best informative and supportive site on the web. Sorry to hear of your problems , but once you get on the right meds. and the proper care you should begin to pick up emotionally and strength wise. You will find a lot of people here who have been down the same or similar road as you and can offer some great advice, especially what questions to ask your Drs.
I myself have SLE and MCTD. Just google them and you will find out more. As for meds. I am on Warfarin (Coumadin) for blood clots that brought this to a head, Prednisone 25 mg which does wonders for the chest pains :( (inflammation), Plaquenil 400 mgs. also for the inflammation ( some people swear by this stuff, but it can take anywhere from 2 to 9 months before it works it's magic, Imuran, to help me taper off the pred., but it takes it's time too; then other meds for the migraines nad to get some sleep, plus a "happy" pill to make me not such a jerk to be around.:eek: And a few others just to have a well rounded diet of colours it seems.
My best advice for your wife is for her to become part of this site and read all the different correspondewnce to become more aware of what you are dealing with, and for her to become more knowledgeable on the topic. You get the first hand comments here, some good , some bad.
Good luck and if you need to "unload" this is the place. We all do it here, and get the support that is hard to find anywhere else.
Good luck buddy.;)

[Mikey]

hi i am new to this site, so i thought i would give it ago, two years ago I was going deaf, hearing teats showed my hearing was getting worse by the week and I was advised to learn to sign, I am pretty good at it now. Anyway, I had a boys weekend away playing golf and after the first day I was totally shattered, the guys went for a walk into town I was in a hot bath having a soak. Getting dressed for dinner I could not put my sock and shoe on my left foot it had swelled up. My pals suggested that was not a good thing and i should forget golf and go to A & E the following morning. Great I spent the weekend in hospital being pumped full of heparin, I had a DVT in my ankle!!. I thought you only got those from long distance flying. So on the Monday I went as usual for another hearing test when she asked me how was the weekend, i explained my woe missing out on the golf, she then said I think I know what your problem is. Happens one of her friends is Dr Graham Hughes at St Thomas in London. So off I go too see him. Over the course of the next three months I see him every friday and my health was getting worse and worse, tired you would not belive could not spin any more, playing 18 holes was impossible and to me life was passing me by. Just before Xmas everytime I sat down I fell asleep, i was at St Thomas and my eyes had been red for a couple of weeks but this day there was no white, all of a sudden I had UVitus and lesions in the eyes, could not bear bright lights, vasculitis, odaema in both legs. I make blood clots in my capillaries hense the hearing loss, that weekend my body went into shut down and I am lucky to be hear today. For once in my life I was in the right place at the right time. I am where I am now still fighting it my wife and two boys look at life differenty now i will not give in and manage to play golf if my hands are not too painful and my legs hold out. The up side boy do I get a good nights sleep. Chhers for now

[Douglas]

Howdy, Alex. Only 20 years for a dx? I hate to say it but it took the MDs even longer for me. I was crippled suddenly c1974 but who would think to check for Lupus in a male? And no one did until last year . I have found this site to be a tremendous help despite the fact that there are very few men - but the women are great!:) So I ma very sorry you are sick but glad you have an answer to the reason you have been sick. I like you "fungus" bit; they thought mine was psoriasis and the joint pain was allergic arthritis. Physicians are human too...... I think.;)
Douglas+

[SergeyVag]

Hello alex,

I am just 18 male, but got lost for probably 9 or 10 years so i am with it most of my life x_x i just realized that...
lol anyway i been diagnozed 3 and a half years ago and the doctors thought that the rashes were alergy reaction as Dougles said "the doctors are human too.... i think" so they can make mistakes too just .... their mistakes can cause deaths........ mm just as someone as soon u get the right medications you will feel better and this is realy great place no one can understand you better than people with the same problems and pains.

btw camel milk helping me i feel better with it, it got some imunnoglobulin
in it so thats why it helps and its natural not like the pills imuran and others

Best wishes.
Sergey

[JLmuir]

Mikey,

Congratulations for being on Dr. Hughes' service. You can't do better than that!

You're in good hands. I hope you feel much better very soon.


-- JLmuir

[helloos]

Hi and welcome to the site. Although I am sorry what has brought you here. It just goes to show us all, that yet another Lupus victim has gone so many years undiagnosed. It really is such a shame.

I think if you show your wife this site and let her read at the home page, she may feel a little better.

Also maybe visit with you to your doctor.

I think at first it is overwhelming but after you both educate yourself, you can see that many people live normal lives with Lupus and some even in remission.

With the right doctor who is up to date with Lupus, the right medication and support, you can be one of them.

This is a great place for support and many friendly people here.

http://i46.photobucket.com/albums/f107/LauraByWater/welcome/SmileyWelcomei.gif

[MILLMILL81]

:) Hello Alex
welcome to the site sorry for the Dx of lupus you will find very support here in the site I was Dx in 2004 with lupus and sjogren am mother of 4boys:) good luck

mill:)

[iris.phillips1]

:hug: hay alex,
welcome to the lupus site you will find good friends and advice on here, my name is genette i have sle lupus, lupus anticoagulant, raynaulds and thrombocytopenia.
please to meet you alex:flower2:

as for your wife i think it would be great if she came on here and read some of the imformation and make sure she goes to app with you so she can understand lupus and what your going through.

hope to chat soon
love genette xoxox:rotfl:

[georgee]

hi alex sorry to hear it took so long but at least you know whats wrong now it took over 30 yrs for me i heard every diagnosis from growing pains arthritis rhuematism vertigo overworking laziness eventually when my gp admitted he didnt know what was wrong with the help of this site i asked for an antibodie test it came back positive my first reaction was anger which would not have helped my next reaction was relief at least now i know life has to be better with treated sle than untreated i wish you well there is lots of lovely people who understand and are willing to help george