[1leggedfreak]

Hey I have been newly diagnosed with Lupus unfortunately I have not spoken to my doctor yet, I missed an appointment with a dermatologist after he done a biopsy on a recurring area about the size of a 1/2 dollar on face next to left eye that clearly looked like an allergic reaction, I started seeing the dermatologist about 2 years ago about that spot and mainly about weired breakouts on my back and sometimes upper chest that looked sorta like zit's he done a biopsy on them and came back basically as folliculitis, so it was treated with a benzo-peroxide wash and clindamycin cream,

But in December the spot on my face came back, same exact area, he performed a biopsy on it and I was supposed to go back last Friday to get the stitches removed, I called the day before and cancelled due to the stitches coming out by themselves, Nurse called me Yesterday and informed me I had Lupus I asked skin or systematic and she said needed some more blood test but the skin lupus was for sure and I would have to say with my other symptoms it probably is systematic, I twitch at night and sometimes during the day and have been on gabitril and helped but still happens, Joint pain, stomach pain and various nerve problems,

But I was in an accident on 8-07-03 at a grain facility and lost my left leg except 6", Rectum muscles and a few inches of intestine, scrotum was degloved and ripped my prostate lucky to be alive, After initial surgery and 21 pints of Blood I contracted mucormycosis which is basically flesh eating virus contracted from the grain in a natural occurring fungus, treated with aids cocktail of antibiotics and 20 hyperbaric chamber sessions 2 1/2 long it cleared up

I left the hospital 39 days later with Pseudomonas which I got from the hospital itself so the doctors wanted me out of there my wife was taught wound care and treated me for the next 3 months packing and picking cleaning all is well.
First rash appeared 2 weeks after accident and comes back periodically, I was wanting to know if anybody else has none of Lupus coming on or being caused by major infections reason being is if it Related wich I feel is Workers comp is responsible for all bill's, which would be unusual but by whole injury and living through it has been,
They also had to pay for a penile implant wich is highly unusual for workers comp, That is my first concern would be paying for treatment Sorry for the long post and any misspelling. I promise any more post will be shorter .

Jessie (1leggedfreak)

 

[rwb200]

Sorry to hear about the terrible ordeal you have been through.
Right now they have yet to find a cause for Lupus.
They have looked at alot of stuff for cause but have not found any yet .

 

[1leggedfreak]

Renal failure

Hey also for the last 3 weeks I have been not urinating the normal amount for me, and now when I do it is very noxious as far as odor, sweating sort of like cold sweats, strange I feel cold but sweating at the same time, and instead of normal this sweat seems sticky is this common with lupus or would you have any idea, I am going to get more test done tommorow I just am curious as of now and wondering how fast it can damage kidney's? Any idea Thank you Jessie

 

[Lily]

Hi jessie and welcome :welcome:

Sorry for all you are and have been through. If you are having more tests tomorrow make sure they include a urinalysis which can easily detect a possible problem with kidneys.

love
Lily

 

[halfpintfl]

Hi Jessie, and a warm welcome to this site. I am so sorry for all the pain that you have been thru, but you seem to have a good attitude and that is very important. The cause of lupus is unknown, but there might be others that read your post that can help. If not, try to post again and say something like: "Kidney Troubles ?" I wish you the best.

 

[SoCalEric]

Man, Jessie, sorry to hear of your troubles. So you haven't seen a Rumy yet? Hard to say on the pee thing, but make sure your Doc. runs a test. I've been through Nephritis a couple of times and it can get bad very quickly. Do you have a lot of foam in your urine? That could be a sign your passing protien. Also if you're retaining water you're feet....er, foot, would tend to swell up as gravity pulls the water down. How's blood pressure? If ya got Kidney involvement it'll go up. Sounds like you still need some work to do on a real diagnosis, took me years to get one. As for me I've never had any rashes, lots of other troubles. Blood clots, joint pain, fatigue, headaches, ITP, and of course Nephritis are a few of my troubles (the Nephritis is how I got a dianosis). Good luck with things, hope it goes well for you!

Eric

 

[macfamily53]

Oh my Jessie

I am so sorry to hear of so much health issues and sure hope things get figured out for you real soon and get you on the way of feeling much better.I just want to welcome you to the sight and let you know there are a lot of wonderful caring knowledgable people in here.They will help and support you with whatever you are going through.I sure hope you do find a good rhuemu real soon as that is a big part of getting things under control.Take care and please let us know what you do find out.

Tammy

 

[Maia]

The cause is not known - the best thinking currently is that it is a likely mix of environmental (infection, virus, bacteria, toxin, etc.) and genetic vulnerability. So it's likely you'll never know what caused it, a doctor will not be able to say with any degree of confidence it was caused by any of the infections you've suffered from as a result of the accident/hospitalization.

There is such a thing called "molecular mimicry" which is already known to cause the damage to the heart after scarlet fever/rheumatic fever. It is possible (in my opinion) that something similar sets off other cases of autoimmune disease including SLE. But proving that is impossible at this time.

Best wishes for a smooth recovery from here on out. A urinalysis and some simple blood tests should be able to identify any problems with the kidneys. Hopefully you'll be spared that lot of trouble after all you've been through.

Take care, and I hope you post back with updates as to how you're doing on the lupus meds. They can make a world of difference for a lot of people!

 

[Leora]

Hi there....

It was nice chatting w/you and others on Tuesday evening and into the early hours of Wednesday morning...

I've been doing a bit of research for the past couple of hours.... (for myself)... I came across several things that seem to fit me to an absolute T.... Lupus (SLE) of course... but two new things that fit me like a glove in terms of every single symptoms are:
1) Hodgkin's Lymphoma... LF check this out because one of the symptoms is Excessive sweating, etc...
2) Polymyositis... I do not know for sure if I have this or not... I truly believe it's more osteoarthritis & osteoporosis for me rather than polymyositis. I do have all the symptoms that's associated with poly... but will need to present all of this information to my physicians.
3) Achalsia ... in this case for me, it has got to be hereditary because I have suffered with this for as long as I can remember. My grandmother had this for as long as I have known her.

LF.... Have you gone online to Medline? (I cannot remember the exact website.... but it's something like that).... It's truly a fantastic website. Highly informative as well. I personally found that there are 3 blood tests that I could use to make things more concrete for me. I have already had the RF test numerous times but it's been quite a long time since I've had that. The other one that piqued my interest was the Complement C3 test... It measures the activity of a certain protein... I learned there are nine major complement protein. They are labeled C1 - C9. This test measures C4...

LF.... I cannot possibly fathom what you have had to go through when you had your accident at the plant. I truly cannot. I'm so sorry to hear you had such a freak accident. I always worry about my husband getting hit again... a couple years ago at the plant he works at... the button that is supposed to stop dead in its tracks didn't stop and of course my husband didn't know this... friends of ours jumped and pushed him out of the way. Had the vehicles hit him, he wouldn't be here today.

In light of everything you have been through, it appears to me that you are truly a very positive person. Your wife is truly wonderful! You both had your entire lives changed overnight and yet you both persevered and came out on top of it all! Just keep thinking positive!!! Life goes on and so do we all! Smile

~Heidi Leora

 

[1leggedfreak]

Leora

Hey it is me again I just wanted to say hi I feel crappy so hopefully I will talk to you later, take care Jessie

 

[Clare.T]

Welcome to the forum Jessie
I am really sorry about all you have suffered and are going through now.
The information part of the site

www.thelupussite.com

has articles about the sort of tests that are done for systemic lupus. I hope you'll get them done soon and be able to see a specialist - usually a rheumatologist.
It seems that all sorts of life events can trigger lupus in addition to suspected environmental triggers in susceptible people. Anything that makes great demands on the immune system including physical trauma either accidental or unavoidable such as surgery and even prolonged severe stress

Many drugs can trigger lupus either drug induced symptoms which go when the drug is withdrawn, or chronic clinical lupus. Certain infections are also implicated, mostly the Epstein Barr virus sort like mononucleosis. Then there are known or strongly suspected life style triggers such as UV exposure or smoking.
I can't recall ever reading a single instance when it has been possible to prove a single cause, unfortunately. The best known instance is the investigation, maybe it was even a class action, into whether silicone breast implants could cause lupus like autoimmune illness. Another possible instance is investigations into Gulf War syndrome.
The 'defendants' in such cases, those who would have to fork out in damages and so on, usually have limitless resources funds and expertise.
The problem is that it is impossible to prove that lupus wouldn't have developed anyway. You would have to get top experts prepared to state a almost certain opinion that the severe trauma of the accident and infections and maybe also drugs used to treat them triggered lupus

Please let us know how you get on at the doctor's. Make a list of all your symptoms and a life health history including chronic health problems of near blood relatives. A urine test can very easily be done by a GP. Maybe when the blood tests have been done they could start you on some Prednisone to quickly bring down inflammation.
I'll be keeping you in my thoughts
Wishing you the very best of luck and my regards to your wife

Bye for now
Clare

 

[halfpintfl]

Hi again Jessie, it's me again. I forgot, but I read in a Lupus research
paper, or somewhere,and then I asked My Rheumy just for confirmation, but it seems that Lupus can be triggered by a one-time, very tramuatic
experience. I had to read your post twice to see the accident at the grain place. I do hope this helps you.

 

[1leggedfreak]

Thank you everyone

I just wanted to thank everyone for their kind comments and all the info I have received in a very short amount of time and I trully wish everyone to live life to the fullest and enjoy every moment and also remember family is most important at least to me. Thanks again Jessie

 

[LolaLola]

Dear Jessie,
What a time you and your wife have had.
I also believe Lupus can come on after trauma,but proving it may be hard.
Let us know what we can do.
In my early days with Lupus I used to get dreadful sour smelling sweats.
x Lola