Author Topic: Diagnosed!  (Read 3689 times)

Jack

  • Guest
Diagnosed!
« on: January 27, 2010, 07:19:16 PM »
Well I finally have the diagnosis of SJS.  I found a wonderful Rheumy who TALKED with me and gave me information and options.  This has never happened before after yrs of searching for help.  I'm so pleased to have this help finally.  I'm glad I didn't give up (I was almost at that point) looking for an answer. 
Thanks to everyone's support.  I can't take the Plaquenil? because I have psoriasis but at least I know what I have now.  I had the same family doc for over 10 yrs. who never heard me or gave me any help.  I don't know why I ever stayed with him for so long and I'm thankful that I got the sense to fire him and move on.  Anyway I guess I just want to ask other's in a situation like mine to not give up and to keep pressing the Dr's.   

Joe S.

  • Hero Member
  • *****
  • Posts: 7691
  • Fibro, Sjs, RA, CNS, Diabetes, TIA's, ADHD, ptsd
    • Chakra Force
Re: Diagnosed!
« Reply #1 on: January 27, 2010, 07:41:39 PM »
Great comments, Jack!
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism

eyeamdry

  • Guest
Re: Diagnosed!
« Reply #2 on: January 27, 2010, 10:12:24 PM »
Jack, I have SJS and have been on Plaq for 3 years since my diagnosis. I also take methotrexate.  I had a sidetrack 6 month after diagnosis with a dx of b. cancer.  Surgery and radiation.  I'm still low on energy from that. I got sidetracked.

I also have been dx with psoraisis in this period of time, but no one said stop Plaquenil.  I have some cream for the psoraisis and seem to be able to keep it under control.  I also was dx with Fibromyalgia within the past year.  :-))   I just wanted to get in all "my dx" tonight.  Lucfy

Lesleybird

  • Guest
Re: Diagnosed!
« Reply #3 on: January 28, 2010, 02:10:07 AM »
  Don't be too happy that you have a diagnosis as there is very little that can be done to help this disease, and there is no cure.   Lesley

wen.uk

  • Guest
Re: Diagnosed!
« Reply #4 on: January 28, 2010, 07:26:46 AM »
Hi Jack
I'm glad that you have finally got some answers and found yourself a better doctor who seems to understand, at least you know what's the matter now.  I'm also pleased that you have found this site as it will give you lots of answers, info and support in the months to come.

Wen x

Jack

  • Guest
Re: Diagnosed!
« Reply #5 on: January 28, 2010, 04:43:25 PM »
I'm not HAPPY at all that I have this disease but I am happy that I finally have a diagnosis that will stop the "run around" and misunderstanding associated with the search for a physician willing to help me.  It's a huge relief to be able to be "validated".  Now I can release the stress associated with all of the uncertainty and focus now on managing the symptoms with a physician who is willing to help.  For that I am grateful.  As most of you probably have I've suffered for years, feeling alone with no place to turn.  I've suffered in silence for years but that is no more.  I won't be silent or complacent with this disease.  People and physician's need to hear from us.  So that's it in my humble opinion at this point.  I feel that I've been pushed around, dismissed, labeled, and generally treated badly while searching for help.  Now I have a Dr. who gives me the feeling of having a "safety net" that I've never had before.   

lynnmarie219

  • Guest
Re: Diagnosed!
« Reply #6 on: January 28, 2010, 05:40:10 PM »
Jack,

I certainly understand what you are talking about...no one is ever happy to be diagnosed with anything...but we are happy to get answers and like you said be validated. There were times when I started to question myself and it was good to know exactly what I was dealing with and could face it head on.

I'm also glad to hear that you have a good rheumy now who listens to you and talks to you and you can feel good about the fact that you didn't give up looking for answers...good for you!

Thanks for sharing your experience here with others to encourage them not to ever give up...and to know there is always hope no matter how hopeless you may feel!

inga

  • Guest
Re: Diagnosed!
« Reply #7 on: January 28, 2010, 06:34:08 PM »
Jack,

Did your docs ever mention that psoriasis IS an autoimmune disease that comes with sicca syndrome, arthritis, or arthropathy and all the miserable stuff that most autoimmune diseases?  Psoriasis is not just a skin disease....some people get psoriatic arthritis without the skin arthritis!  People with psoriasis have many eye issues.  Psoriasis can be a very serious autoimmune disease all on its own.

Bernice

  • Guest
Re: Diagnosed!
« Reply #8 on: January 28, 2010, 10:12:15 PM »
Jack, I too understand your relief in knowing now you can move forward in your treatments.

A good doctor that listens and treats is worth their weight in GOLD!

Patze

  • Hero Member
  • *****
  • Posts: 6705
Re: Diagnosed!
« Reply #9 on: January 29, 2010, 08:06:12 PM »
I so agree with Bernice, "a good doctor is worth their weight in GOLD"!  My thoughts exactly!!!

Congrats Jack, that is good news indeed!  Lucky you!


Patze
« Last Edit: January 29, 2010, 08:10:17 PM by Patze »
Our home page  http://www.sjogrensworld.org/index.html
Live chats  http://sjogrensworld.org/chats.htm

Everything has beauty, but not everyone sees it - Confucius

The important thing is not to stop questioning ~ Albert Einstein ~

Sero Negative Queen

Epson

  • Guest
Re: Diagnosed!
« Reply #10 on: January 29, 2010, 08:24:15 PM »
Jack,

I remember when I finally got dx with Sjogren's, it's funny, I was never so happy to be dx with a medical disorder in my life, but after years of being told there was nothing wrong with me I felt vindicated.  Knowing is half the battle!

Pisces24

  • Guest
Re: Diagnosed!
« Reply #11 on: January 30, 2010, 01:32:16 PM »
Jack: I totally sympathize with you and understand. Most of us had to go through a bunch of "drs" before we found the right one. Lots of us had to get rid of our "old notions" that drs are wonderful and know everything. Must be a notion ingrained from childhood like an authority figure??

With me, I felt fine but was getting sinus infections 5-7 times yearly and my bloodwork was way off. My gp, bless his heart, was like a dog after a rabbit in a woodpile - determined to get to the bottome of it.  :D I had a 6 year saga of bouncing specialist to specialist.  Feeling fairly fine and having doctors tell you no you are not is a big shocker. I heard everything from:  it is probably something you picked up from your cat  to  I am sure it is lymphomic cancer but you are not showing the right symptoms and are not sick enough.  ??? >:(  I went up an down emotionally more than the roller coaster at the theme park.

March 2009 I finally got a  firm SJS diagnosis. I don't like the term "progressive" but none of us have an accurate crystal ball on our futures.  I like the SJS label a lot better than some of the other labels the specialists were throwing at me as possibilities.  Least now 1)there is a little more light on the unknown 2) I got reasons drs can relate to for my symptoms and 3) know what to monitor and watch for.

It's a huge relief to be able to be "validated". --- is right.