PDA

View Full Version : Hey! my story..long post sorry!



Bench
01-30-2011, 02:49 PM
Hi guys,
I found this site last night while I was looking for people with similar cases as mine related to finding a diagnosis.
I've had problems with Asthma and Pleurisy since before I can remember, but the reason I went to the doctors a year ago was because my body, mostly my legs, were swelling so much that I couldn't wear my jeans anymore and I was finding myself short of breath (im almost 22 yrs old and exercise sometimes over an hr a day).
I have also had this incredible itch in my legs and no matter how much cream I apply it still itches...also hair loss, I was diagnosed with Raynaud's, and a high fasting blood sugar (normal GTT). I have not had an ANA or C-react. for almost a year but they came back normal when they were first done. I have had liver and kidney blood tests, thyroid tests- all come back normal! The doctor I went to about my legs said after I told her about how my legs are sensitive to the touch and swollen right from my feet through my knees to my thighs that I was "painting her a picture of Lupus"
Since that day she has stuck to that probability and with all my symptoms gathered she is trying to get me into a Rheumatologist. I have seen an Internist and 2 Endocrinologists who all said this is something for the Rheumy.
Here's what gives me hope: my mom's 2 half sisters have Lupus and their symptoms started EXACTLY like mine- her one sister says she still has the itch and that's the only thing the doc's cant get rid of, the swelling is managed with meds. of course.. and now this site. I am so grateful to have found this forum where everyone can relate and I can offer some comfort to others too :)

tgal
01-30-2011, 03:51 PM
Hi Bench! Welcome to WHL. Your story sounds so familiar and I know so many of us understand exactly where you are right now. We are really glad that you found us. Please make yourself at home and look through the old posts because there is TONS of good information here. If you have something you want to ask or talk about feel free to start your own thread as well.

I look forward to getting to know you and welcome to our WHL family!

Angel Oliver
01-30-2011, 04:18 PM
Welcome Bench,

Sounded like me talking there.No dx yet,asthma and just getting over pleurisy,itch....funny you should mention this as my legs ,arms,chest,uder my chin itch like i could scratch my skin off.Just thought i was reacting to my meds,wow.You'll find a great bunch of people here.Catch up with you soon.

love
Amanda.xxxx

Saysusie
01-30-2011, 10:12 PM
Hi Bench;
I am so happy that you found us and that our site has been helpful to you. You are not alone, as you've seen, there are quite a few members here who have dealt with the symptoms that you've described and many of us who truly understand what you are going through.
I am glad that you have found a doctor who believes your symptoms and who is willing to make the appropriate referrals for you. Please let us know if you do get to see a rheumatologist and what he/she says.
In the meantime, we are here to answer any of your questions and to help you as much as we can. I am glad that you are here.

Peace and Blessings
Namaste
Saysusie

Bench
01-30-2011, 10:21 PM
thank you for the warm welcome! I truly appreciate it... just finding others who feel this way makes me realize it's not in my head and it gives me the courage to keep on keepin' on until a Dx can be reached

Bench
01-30-2011, 10:22 PM
Saysusie, I will be sure to keep everyone posted as far as my appt. with a rheumy is concerned thank you for the friendly reply- i appreciate it!

Bench
01-30-2011, 10:24 PM
Amanda
that is so crazy! I love that someone else understands what I'm saying.. whenever my symptoms get really bad I think okay is this in my head... am I being a hypocondriach (excuse the horrible spelling)

And a sorry to anyone here if I am replying incorrectly I have NEVER used a forum or anything like this before haha I'm truly a Newbie

Saysusie
01-30-2011, 10:28 PM
Bench;
No worries, you are doing just fine :-)

kim,l
01-31-2011, 04:34 AM
hi bench welcome whl we are here to help anyway we can even its just to vent sometimes hugs kim l

~LUVMYFLOWERS~
01-31-2011, 05:17 AM
Hi Bench, And welcome to WHL! Im so glad you found us too. I also have asthma, but thank goodness it only flairs up maby once or twice a year now, lot's of broncitus on and off.
And can surley relate to the itchy skin thingy that just will drive you nut's.
There are lot's of wonderful people here, and youre surley not alone!
Hope you have a great day! Diane,

Peridot_Gem
01-31-2011, 10:24 AM
Hi guys,
I found this site last night while I was looking for people with similar cases as mine related to finding a diagnosis.
I've had problems with Asthma and Pleurisy since before I can remember, but the reason I went to the doctors a year ago was because my body, mostly my legs, were swelling so much that I couldn't wear my jeans anymore and I was finding myself short of breath (im almost 22 yrs old and exercise sometimes over an hr a day).
I have also had this incredible itch in my legs and no matter how much cream I apply it still itches...also hair loss, I was diagnosed with Raynaud's, and a high fasting blood sugar (normal GTT). I have not had an ANA or C-react. for almost a year but they came back normal when they were first done. I have had liver and kidney blood tests, thyroid tests- all come back normal! The doctor I went to about my legs said after I told her about how my legs are sensitive to the touch and swollen right from my feet through my knees to my thighs that I was "painting her a picture of Lupus"
Since that day she has stuck to that probability and with all my symptoms gathered she is trying to get me into a Rheumatologist. I have seen an Internist and 2 Endocrinologists who all said this is something for the Rheumy.
Here's what gives me hope: my mom's 2 half sisters have Lupus and their symptoms started EXACTLY like mine- her one sister says she still has the itch and that's the only thing the doc's cant get rid of, the swelling is managed with meds. of course.. and now this site. I am so grateful to have found this forum where everyone can relate and I can offer some comfort to others too :)Hi Bench,
Welcome to the WHL and it's lovely to have you with us and share your problems besides ourselves, as we're all in the same boat one way or another.
The Pleurisy is a large give away to the condition as i've had that twice myself and how you have asthma, i have severe bronicle broncitis, so i do hope the Dr's have you on inhalers for your shortness of breath, as i have to take 3 different lots.
With the itching to your legs and hairloss that's a connection to the raynauds and refering the swelling of your legs, it can be swelling of the joints which i have daily but still see either your GP or specialist to have a blood test taken to see if your clear of Deep Vein thrombosis [DVT] as i had that and needed to be put on wulfrin and daily injection's and they've just re-tested me and i've come clear for the time being but i do suggest you ask.
Well if you see a Rheumo specialist and Lupus is confirmed, then it's come from your mom as Lupus is mainly inherited from a parent.

I've had symptoms from the age of 5yrs old onwards and diagnosed with things related to Lupus and it was'nt till last year when they did tests and told me i had it but was actually born with it.

I do wish you all the very best and it will be nice getting to know you.

((Hugs)) Terri xxx

Angel Oliver
01-31-2011, 11:33 AM
Nope non of it is ever in your head.You know your body.Just takes the doctors much longer to realise.Just try n keep fighting on, hopefully one day soon the doctors will hear us both.Other members here go through much the same,but its up to us not to be intimidated by the doctors and stick to your guns...you are sick.Keep posting!!

love
Amanda.xxxxx

Bench
02-05-2011, 02:37 AM
Hey Terri!
yeah I have been on 3 inhalers since I was 4 I think... maybe :S I dont really remember.
I did have a D-dimer done a yr ago to check for a DVT and it was negative. I'm so sorry to hear about everything you go through- that is really tough I'm sure. What an interesting journey you had. That must have been something to hear you were actually born with it.
I did have ANA, CRP, ESR and the works for liver and kidney done a year ago, but I just recently had the FANA, ESR and CRP done again so I am waiting for the results.

My doctor put me on Lasix and Voltaren for now to help because hydrochlorothiazide and naproxen didn't do a whole lot for me. I have found relief from this.. there's just a little bit of inflammation left but its only day 4.
The first day after taking a full days worth of my new meds my legs hurt sooo bad because of all the bruising from the swelling.. I didn't even realize it was doing that! I almost cried when I saw the definition of my muscles in my thighs!! how ridiculous I know, but Ive just been so miserable not fitting my clothes.

Did you always have positive blood work?
Thanks for sayin' hi, I look forward to chatting more with you! xox

Peridot_Gem
02-08-2011, 04:38 PM
Hello Bench,
They've got me on one steroid inhaler before i go to bed to keep the congestion with my lungs at ease, the 2nd one is to take through the day as needed and the 3rd is if my lungs struggle for oxygen just a couple of puffs and my god it's a brilliant feeling loads of cold air going down, which really helps but that's more for emergencey's.
I had an high D-dimer with my DVT and i've recentley seen the blood specialist who works with my rheumo and say's my blood as come back negative at the moment for not taking wulfrin but they've got me on 75mg tablet of asprin daily, they're only covering themselves constantley.
Well it was'nt a shock when they said i was born with it because from a small kid i had congestion of the lungs and had to have rapped pulltish around my lungs and when i was 5yrs old i remember never being able to keep warm and my eyes looked like panda's my mom had me checked and nothing showed and i carried on for years until 14yrs old and i was having signs of autissume and at 18 that's when the blow really hit me manic depression, seizures up to 18 and over a day, it's only been the last few years they've been controlled abit better but i've gone through alot and all those symtoms was the lupus and what i have below.

Well my ANA & ENA are showing high and when he see's me again he wants to do a DNA test on me, the amount of blood they've had no wonder i'm an anemic.lol

I was offered presidone and refused because it's a steroid but it would have counter reacted with my tegretol anyway, so at the mo i'm waiting one way or another to start plaquenil, they did offer a small amount of steriod to start taking today and a tablet also as the steriod causes brickle bones and i've told them no again, so it's a waiting game till friday arrives.
I have swelling in my knees, muscles spasms in my carves bad, my hands and fingers swollen daily and blood shot red, rashes but the only blood tests they done have been in the last 2yrs where they've come in with what i have below.
I've always been a very thin person, some meds have mad me go up to 18stone with steriods included but not no more i don't stand for nonesense.

I will ask you something with you having DVT have you got dark purple scarring around your ankles and up your legs as i have and more have developed and it's all been down to the DVT as it causes your blood vessels to burst open.

I really hope your able to pick up abit and i've been there with the clothes lark and it makes you feel like giving neck but you have to carry on.
I really wish you all the best and let me know how your going besides us all.