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10-26-2011, 11:24 AM
Hia my name is Karen, I haven't officially been diagnosed as yet but am going to see a rhumatologist next Tuesday. I have been feeling really exhausted for the last 2 years, have been back and too to the doctors with a low ferritin level,infections after insect bites, not being able to breath and put on inhalers,and more recently I have had boils!! Very painful in my privates, due to all the times going the G.P. she decided to do auto immune blood tests,as my mother has liver scelorsis, she found out in the 7 years, my eldest sister developed rheumatoid athritis at 18 and my younger sister developed diabetes type 1 at 18, all auto immune and stemming from my mum, anyway my blood test came back and was 100,my G.P. has refered me to hosp as she thinks its Lupus. I'm terrified, my Great Aunty Pat died from Lupus!! 24 years ago. In a way I need to know as not knowing is worse I'm sure.
10-26-2011, 05:47 PM
Welcome! This is a great group of knowledgable, supportive people. I hope you find lots of good information here.
I understand your fear. Losing an Aunt to lupus would be scary for you but remember medicine has come a long way in the last 24 year. Hang in there. Seeing a rheumatologist is a great start.
10-26-2011, 06:43 PM
Welcome to WHL.
Brenda is right, today people live much longer with Lupus, it is not a death sentence anymore.
The rheumatologist will put you on the meds you need and you will be fine.
Rob, one of our moderators, his mom has Lupus, she has had it for a long time, she is in her mid 70s now and still going strong.
So don't be to scared, we are here for you, whenever you have a question.
10-26-2011, 08:19 PM
as the others have said.........
medicine has come a long way.
i was diagnosed about 3 years ago.....after having it for about 35 years.
when i was diagnosed,i had 4 major organs involved.
today, thanks to medication, my lupus is in check.
not everybody has the same results..... but it is possible.
i also know of someone, through this site, who died only a couple of moths ago, from lupus related complications.
please, take the time to write down your questions, before you go to the rhuemy.
whe you are in there, you will get information overload, and probably forget to ask something.
please keep us posted, as to how things develop.
10-26-2011, 09:09 PM
Welcome to WHL. As everyone else has told you, with today's meds, you'll do just fine. AI issues certainly seem to run in your family. In a way, that was in your favor, since your docs were on top of it and are figuring yours out right away.
We're glad you're here, and you are welcome to join into any thread or ask any questions that we might be able to help with.
10-28-2011, 02:55 AM
hi karen welcome to whl it is true that it can run in families my mother has it she is64 i have it was diagnosed 4years ago but have had it for most of my life and my 23 year old daughter has recently been diagnosed but medicine has come a long way. i agree with others write down any questions and symptoms you have to show to rhuemi and remember we are here to listen whenever you need someto talk to.
10-28-2011, 06:35 AM
Hi Karen and Welcome.
I too have been recently diagnosed with Lupus. As others have said, Lupus isn't normally a death sentence anymore. It is my hope that you will have a wonderful rheumi who will listen and get you on the right treatment.
This is a wonderful place to ask questions, vent, etc.
We look forward to getting to know you.
10-30-2011, 12:34 PM
I would just like to say to you all a big thankyou for your messages, I will let you all know how I get on, on Tuesday,still really anxious, but am hoping they will sort out my boil problem as I'm still suffering even after 4 weeks of penycillin!!! Thanks again all x
10-31-2011, 07:01 PM
It's scary. There's no doubt about it, but your doctors are a big part of your support team. They are on your side and want the best for you. Be assertive with questions. Make sure you understand what's being talked about. For me, being ignorant was the scariest part.
Best of luck!
10-31-2011, 09:33 PM
hi alina, welcome.
glad you have found us.
11-01-2011, 12:04 PM
Well I have been to the hospital today to be diagnosed as having chronic fatigue syndrome!!! Consultant told me to try alternative therapies and to take an antidepreesent at night. Then she sent me off for lots of other blood tests. I have not got chronic fatigue!! Been to my G.p. who also says I haven't, gonna ask for a second opinion, totally gutted by today, I just want to feel better.
11-01-2011, 06:54 PM
11-03-2011, 04:55 PM
Hello, and welcome. You are on the right track with asking for a second opinion, it's always a good idea when things aren't clear. You might also want to ask for a referral to a dermatologist, if your boils haven't gotten better.