Jump to content

Hang onto your hat: Sclero Forums Upgrade May 14-21, 2017!! The Forums will be offline for up to 4 days, and then will return with an entirely new look and feel.



  • Please log in to reply
9 replies to this topic

#1 nolaboo



  • Members
  • Pip
  • 1 posts

Posted 10 June 2010 - 10:39 AM

Hi All......

I am new to this website. I was diagnosed with scleroderma in 2003. I went through a few years of unknown issues, but a observant dermatologist is the reason I found that I was suffering from an autoimmune disease. Imagine I brought my daughter in for a skin condition, and I walked out a new patient with orders for some blood tests. The blood tests only confirmed something was going on but did not pinpoint what. He thought it was lupus so he ordered a skin biopsy....the results came back....SCLERODERMA.

I was then referred to a rheumatologist who was an angel. She really helped me to deal with the initial shock, and confusion. She advised me that I should be prepared for a fight, and that scleroderma operates in an undercover manner. She treated me, and prepared me for what may come & she never sugar-coated anything. I respected her for it. I had a great team of doctors in place until August 28, 2005 Katrina hit and things went left. I lost all of my doctors except for my primary care doctor,who I am still with to this day.

I have spent the last 4 years in a fog. Medical care here is still horrible. I have been to 2 rheumatologists who made me feel so inferior and ignorant that I made a decision to forget seeing another......big mistake.

A little over a month ago I had been feeling bad for a few days. I thought it was a UTI, then the flu, then a cold, then ?. I went to services on a Sunday morning and was in the ER by Sunday night. An overworked ER doctor said I had bronchitis, and gave me an IV bag of medications, and sent me home. I stayed in bed for 3 days, and got worse. Finally my family had the good sense to bring me to my primary care. I had pneumonia, and a very low O2 saturation level. I stayed in the hospital for 7 days when I was discharged I had pneumonia, fungal infection of the lungs, a hiatal hernia, pulmonary fibrosis, and first signs of emphysema. Really~ I was placed on prednisone for 30 days, and Nexium. My pulmonologist refused to give me a nebulizer, but my primary ordered me one.and with orders to make follow-ups with a rheumatologist, pulmonologist, and GI. The rheumatologist made the diagnosis, the pulmonologist said nothing was wrong and I should lose weight. I lost 15 pounds in the hospital and was not overweight before that.I think he was just mad he had to come off vacation and deal with me.

Tomorrow is my appointment with a NEW rheumatologist, a NEW pulmonologist, and NEW GI next week. I am glad to hopefully get an answer to the unending fatigue (I do not want to get out of bed most days), phantom fevers, night sweats, shortness of breath, dry hacking cough, and horrible heartburn, and the inability to get food down and this is just a short list.

I have spent the day reading through old forum posts and I finally found a place where I feel as though I am not alone. My family does not understand, and I was at a point where I was beginning to question myself I am glad to have found a supportive arena. Good wishes to all of you.

#2 Lynnie


    Silver Member

  • Members
  • PipPipPipPip
  • 172 posts

Posted 10 June 2010 - 01:58 PM

Hi and a very warm welcome to you!

I read your post and its awful that through no fault of your own you've landed in a very lonely scary place, a lot of us ladies/men (though few) have faced difficulties in finding a "safe place" both with the medical profession and of a personal nature too,and coming to terms with things. It isn't easy.

Unfortunately, we often find ourselves in a world that is fine and dandy, and we are thrown into a world where we don't fit, because Joe Public don't/can't understand how our world changes and shifts beyond what they can understand. Our families mean well,they are scared alot of the time too, it's a not a case that they don't care, it's a case of, if they block it out and don't have to face it, it isn't happening even though it is. Please dont think they don't love and care about you and scleroderma,they do, I am sure.

Never feel alone with your troubles; the people here on this forum are the nicest people I know and will listen and and encourage you along the way. We aren't doctors, but we know first hand how you feel and can share our experiences with you because like you we live with scleroderma and it's "oddities" just like you.

Keep posting; someone will always reply.
Warm hugs to you.
Lynn :emoticon-hug:

#3 judyt


    Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPip
  • 653 posts
  • Location:Auckland, New Zealand

Posted 10 June 2010 - 04:41 PM

Hi Nolaboo,

Just a quick note to say that I am sorry you are so sick, but also welcome to the club!! It would seem that your experiences are pretty much the same as we have all had over the years.

It is so frustrating to be told all sorts of rubbish about losing weight, and handling stress properly, improving your diet, standing on your head in the corner daily and other such useless things. Keep in touch here on the Forum and you will find loads of supportive people, and almost always at least one person who had similar experiences to yours - no matter what it is you are asking about.

Hope your new doctors do better for you than the others.

Warm hugs from the other side of the world.

Judy T

#4 Sheryl


    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,023 posts
  • Location:Brooklyn, Michigan

Posted 10 June 2010 - 11:50 PM

I hope your you can talk freely with these three new doctors and they help you in the best of ways to manage this illness. Hopefully, things will be brighter soon and you will be feeling better. It is hard when you are constantly having to use new doctors that don't understand your case. I hope you are still seeing the Dermatologist that diagnosed you. He can help you with some of the skin issues that many of us deal with.
Strength and Warmth,

Sheryl Doom
ISN Support Specialist
(Retired) ISN Chat Moderator
International Scleroderma Network (ISN)

#5 Joelf


    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,909 posts
  • Location:West Sussex

Posted 11 June 2010 - 08:55 AM

Hi Nolaboo

A warm welcome to this helpful and informative forum. I'm so sorry to read that you've been having such a rough time. :emoticon-hug:

It sounds as if from 2005 to the present day things seem to have gone from bad to worse for you; no wonder you feel as if you're permanently in a fog!! :( It also sounds like a lot of your problems are related to your lungs and pulmonary function.

My lungs have also been affected with Systemic Sclero and thankfully I was diagnosed very quickly and received excellent treatment, so fortunately my lungs have shown a great improvement. I think my worst problem now is Raynaud's which has been very bad this year and joint pains, which with the help of Prednisolone are at least bearable.

I do hope that your 3 new doctors are able to offer you much more support and help than you were getting before and that you soon feel a lot better.

I look forward to getting to know you and reading your posts.
Jo Frowde
ISN Assistant Webmaster
SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager
ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#6 Snowbird


    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,007 posts
  • Location:Canada

Posted 11 June 2010 - 10:20 AM

Hi Nolaboo,

Try to remember to take a list of all your questions to these doctors with you. And if you can, it's always nice to have someone else go with you to write all the answers down. We always seem to come away saying, oh I wish I could remember what he/she said. Just a tip you may find helpful.

Keep posting. This is a great place to ask questions. Hopefully, you'll fill us in on your doctor's visits.

Wishing you better luck with those than you've had in the past. Sometimes you just have to go through a few bad ones before you really find a great one. Don't despair or ever give up, it will happen and just maybe it will be this time!
Sending good wishes your way!

#7 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,925 posts
  • Location:U.K.

Posted 11 June 2010 - 11:00 AM

Hello Nolaboo

Welcome to the forums! Scleroderma is such a multi faceted disease that there's not much in the body it can't effect!

I hope your new medical team takes good care of you and that you get some relief soon.

Take care and keep posting.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#8 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,283 posts
  • Location:Minnesota

Posted 12 June 2010 - 02:17 AM

Nolaboo, welcome to Sclero Forums! How have your new doctor visits gone?

Here's some flowers just for you. :flowers:
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#9 susieq40


    Silver Member

  • Members
  • PipPipPipPip
  • 129 posts
  • Location:Montana, USA

Posted 15 June 2010 - 10:57 AM


I sure hope you get some answers with the new doctor's sometimes it takes a while to find one that will listen and be like a detective and figure stuff out for you. I finally had a doctor that did that, and now know that all the pain and stuff isn't just in my head, and and the doctor's that told me Just eat better and you'll feel better had no clue. My regular primary doctor, missed the diagnoses for over 8 years. I'm finally glad to be on the road to some sort of med's that seem to help some. Right now I'm not too great, but found there are some really ups and downs with this disease. I sure hope you find some reslove. Keep us posted...HUGS to you!

#10 warmheart


    Silver Member

  • Members
  • PipPipPipPip
  • 109 posts

Posted 18 June 2010 - 03:55 AM

Hi Nolaboo,

Welcome to the Forums! I hope things go well for you with your new doctors.

Sometimes it's not easy to find good doctors, but once you have and they've gotten to know you, it makes such a big difference, doesn't it? No doctor should ever make you feel inferior or stupid, and to me a sign of a really good doctor (and good person) is that he or she never would. It's good that you've been able to stay with your primary care doctor.

Please let us know how things go for you!


warmheart :)