Jump to content


Do you want up to date information about Scleroderma? Check out our Medical pages at www.sclero.org for all your Scleroderma questions!


Photo

New With Questions


  • Please log in to reply
18 replies to this topic

#1 Cher

Cher

    Senior Bronze Member

  • Members
  • PipPipPip
  • 31 posts
  • Location: Illinois US

Posted 03 February 2009 - 08:31 AM

Hi,

I'm Cher I have had health problems for six years. There is a lot of autoimmune diseases in my family. My mother died in 1981 from her autoimmune at the ripe old age of 53. They never found out what was wrong with her she had rheumatoid arthritis (RA) and something else. I came down with a severe case of hives in May of '03, I was hospitalized for a week with them. The doctors ran every test that you could think of, they called in an allergist, she put me on Doxipin, Atarax and Prednizone. She took me off of the IVs and they sent me home.

In nearly six years I have been on Doxipin, I was on the Prednizone for three weeks and then taken off. I have been told by several doctors that I have several diseases but they don't know which one as my tests are always fine. The antibodies that I do have are high anti smooth muscle, anticardolipin lupus ptt I think? The top of my hands started swelling when I got the hives, this past November my eyelids started swelling pretty bad.

My hands don't look anything like they used to, swollen and shiny. I went for a CT scan and now I have scar tissue on my lungs and diverticulitis. I had a CT scan done four years ago and didn't have these things. I also have diabetes and fatty liver.

About three years ago I started having problems with my throat. It always feels like something is stuck or a lump in it. I started having sleep problems so they sent me for a sleep study and found that I have obstructive sleep apnea.

I feel all of these things a related but to date the doctors can not come up with a diagnosis. I was tested for Raynaud's and I have a mild case of it.

Anyone have any ideas?

Thank you,

Cher

#2 janey

janey

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,118 posts
  • Location:New Mexico

Posted 03 February 2009 - 09:21 AM

Darlin' Cher,

You certainly have had your share of problems over the past few years! I'm sorry you have had to deal with all of this and have yet to receive a definitive diagnosis. Hopefully you can get some information here that will help you form some questions to take back to your doctors. So Welcome to the ISN forums!

Have any of your doctors mentioned connective tissue disease or scleroderma (also called systemic sclerosis)? I'm certainly no doctor and only know from experience and what I read on the Internet, but the gi problems, scarring of lung tissue, swollen shiny hands and Raynaud's all sound familiar. Each of these problems can be caused by a variety of diseases and issues, but I think what you are asking is why do you have them all at once and are they all cause by one thing? I asked my primary care physician that question prior to diagnosis. She attributed all my many symptoms to age. I was only 49!

My suggestion would be to make a written list of all your symptoms and test results and take it in to your next appointment. When information is scattered throughout a patient's medical file, sometimes it's hard to see a picture. But when it's all on 1 to 2 pages, a picture of what's going on my be easier to form.

I hope you get some answers. We all know how frustrating it is to ask "What's going on?" and not get an answer. Hang in there Darlin'. Please keep us informed as to how you are doing.

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#3 Cher

Cher

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 31 posts
  • Location: Illinois US

Posted 03 February 2009 - 09:27 AM

Thank you Janey, I have done that. The last rheumatologist I saw in December looked at all of my test results and said that I probably had Mastocytosis or Carcinoid. Needless to say they put me through the ringer and said that I have neither. I have no faith that a doctor can figure this out so I am trying to figure it out myself.

Thanks,
Cher

#4 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,706 posts
  • Location:in the Rocky Mountains of the USA

Posted 03 February 2009 - 09:35 AM

Hi Cher,

Welcome to the Forum! I'm sorry too that you needed to find us, but glad that you did.

We've got a lot of information that might be of help to you. I'm with Janey, a lot of your symptoms sound very familiar. :rolleyes: Only your doctors can make a diagnosis, but we have a section in the scleroderma page called Difficult Diagnosis, that might be interesting to you. You can also check out Systemic Scleroderma Symptoms. Often under a sub-section there will be tips to make dealing with that particular symptom easier (like swallowing, for instance).

I think some things we all have in common are: it took forever to get a diagnosis; we ended up knowing more about our own autoimmune disease than most medical practitioners (oh yeah!), and it seems like the first doctors we saw didn't make the ultimate diagnosis.

Best wishes and warm hugs,
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network

#5 Stef

Stef

    Bronze Member

  • Members
  • PipPip
  • 20 posts

Posted 03 February 2009 - 10:32 AM

Cher,

Welcome! I'm sorry to hear of your experience. If it helps, there are several of us here going through the same thing. It seems to take many doctor appointments, tests, and much frustration before we even start to get close to a diagnosis!

Regarding hives, I didn't have an episode in which I was hospitalized for hives, but I do get them frequently. It's usually the first sign I have when I'm reacting to something, or if I'm really nervous. I've had this type of reaction all my life. I just attributed this to allergies and sensitive skin, and a lack of good immunity.

Post often and let us know how you're doing, and know we're here for you!

Hugs,
Stef

#6 Cher

Cher

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 31 posts
  • Location: Illinois US

Posted 03 February 2009 - 12:07 PM

Stef,

Thank you, it is nice to know that I am not alone in this.

Cher

#7 Margaret

Margaret

    Senior Gold Member

  • Members
  • PipPipPipPipPipPipPipPip
  • 996 posts
  • Location:Pennsylvania

Posted 03 February 2009 - 01:55 PM

Hi Everyone ~

Cher, welcome to the forums. I have a son who was diagnosed with undifferentiated connective tissue disease (UCTD) 2 years ago. His symptoms started with the weight loss and food getting stuck in his throat...esophageal dysmotility.

Speaking of hives, has anyone heard from Truman in awhile. How is she doing?

Take care, Everyone.
Margaret

#8 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,890 posts

Posted 03 February 2009 - 02:15 PM

Hi Cher and welcome to the forums!!!

I'm really sorry to hear about all the awful health issues you have going on, but I'm sure glad you found us! I'm with Janey on this one. You do have a lot of symptoms that point to Scleroderma. Have you thought about taking all of your info to "fresh eyes" and dump it in the hands of a new rheumatologist?

Do keep us posted and I look forward to knowing you better.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#9 Cher

Cher

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 31 posts
  • Location: Illinois US

Posted 03 February 2009 - 03:00 PM

Thank you Sweet,

I saw a new rheumatoligist in December he told me that he felt that I didn't have autoimmune at all, and said that he felt that I had carcinoid. I went for two CT scans that were normal. One of them was a nuclear. I have been to four rheumatologists in four years.

I thought that I would listen and learn from this site for a while. My labs are always pretty good.

Cher

#10 ozzy69

ozzy69

    Silver Member

  • Members
  • PipPipPipPip
  • 169 posts
  • Location:Taylorsville, KY

Posted 03 February 2009 - 03:18 PM

Hi Cher,

Welcome! I do not know if it is Sclero realated but hives was the first problem I had. I had them for over a year. I went to four different doctors (allergist, dermatologist) at the time and no could tell me anything about the hives. Prednizone would clear them up, but a week later I would get them back.

They started in 2000 and when they finally left, I then got Raynaud's. Couple years later I had problems with ovaries. I had them removed in 2006. Six months later they had to go back in and remove a mass where my ovaries where. Then I had my gallbladder removed from not working. I still had pelvic pain and was sent to a urologist. Then I was diagnosed with interstitial cystitis (IC( of the bladder. That was in 2006. I then was diagnosed with fibromyalgia. In 2008 I was diagnosed with Sclero.

I have always thought that the hives were the beginning of my problems.

I am sorry you have had so much trouble. If you feel like your doctor is missing something then please do find another doctor.

Much Hugs,

#11 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,890 posts

Posted 03 February 2009 - 03:53 PM

Oh goodness Cher, sounds like you've tried a lot of things. I do hope you will find help from this site. I'm most positive you will!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#12 canon

canon

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 312 posts

Posted 03 February 2009 - 04:22 PM

Hi Cher,

Welcome to the forum. Sorry to hear you are going through so much and not getting any answers. It is not a nice place to be.

I have had hives since I was a child. I get them with hot or warm showers, water moisture, the sun and when I sweat. I do not have them at present and since they gave me a medication called Plaquenil. When I stop taking the Plaquenil I get the hives back. It is just one of the many skin problems the medication helps me out with. My doctors never give the hives a second thought and could care less the plaquenil keeps them at bay. They probably don't remember me ever mentioning them. My raynauds and esophageal problems started when I was 35. The red spots on my face have been there a few years along with skin thickening on my hands. There is a long list of symptoms and a story that would take up a page and 1/2. I was justed diagnosed about a year ago with scystemic sclerosis (scleroderma). Before that it was undifferentiated connective tissue disease and a lupus like disease before that and was able to find someone almost always to treat the symptoms. If there are symptoms a good rheumatologist or doctor will treat them and watch you a long time if necessary. It is imperative to find a good one. My labs are almost always within normal limits especially being on immunosupressants. Keep looking.

Wish you the best and again welcome.

With gentle thoughts,

Judy
A happy heart is good medicine.

#13 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,638 posts
  • Location:(United States)

Posted 04 February 2009 - 11:25 AM

Hi Cher,

It took over 4 years before I got a diagnosis of Scleroderma, to which more have since been added.

I wish we could walk into a booth and find out what ails us, without being put through all that we are.

When the bloodwork is good, it really makes us wonder, doesn't it?!
I will say that we know our bodies and we know when something is wrong. So, being attuned to our symptoms can be very helpful when attempting to hone in on the specific illness.

You are doing the right thing, by being your own health advocate. You have gotten great information from several folks, so sorting through it all is the next thing!

Many of us can relate to the frustration of "doctor hopping"...I can sure empathize. However, I've been to a couple of doctors with whom I didn't hit it off, the first couple of times. Yet, I opted to go back to each of them and found that it was a matter of their unfolding my health issues. (After all, I do have several chronic illnesses and I realize it is a challenge for most doctors). By returning to them I didn't regret it, I must tell you.

Please keep us posted while you make headway, Cher?
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#14 dawnie

dawnie

    Newbie

  • Members
  • Pip
  • 2 posts

Posted 06 February 2009 - 08:24 PM

Hi, Cher:
I am new, too. Ii don't have hives; but I have seborrheic dermatitis at my hairline and on my forehead and on the sides of my nose (that's what the after hours clinic doctor called it 3 years ago). The medicine he gave me for it works, though (triamcinalone spray).
I have been researching on line to see if there's any connection--both can be autoimmune problems (hives/dermatitis and scleroderma).

#15 truman

truman

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 625 posts
  • Location:NJ

Posted 25 February 2009 - 07:08 PM

Hi Margaret:

Thank you so much for asking. I'm quite alive and kicking. Still nursing the amputated area with quite a remarkable recovery in just the last three weeks. I attribute it to my last operation in October and finally getting of Prednisone (pat on back) last month.

I hope all is well with your son and that you're starting to enjoy the intermittent warm days between these summer months.
Tru

It is what it is...........

#16 jefa

jefa

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,325 posts
  • Location:Scotland

Posted 25 February 2009 - 11:43 PM

Hi, Tru. Glad to hear of your success getting off the prednisone and also that you are recovering well. It's good to see you again.
Warm wishes,
Jefa

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#17 Sarah A

Sarah A

    Newbie

  • Members
  • Pip
  • 3 posts

Posted 20 March 2009 - 05:54 PM

I have not been diagnosed but hives are what first brought me to the doctor which led positive ANA and scl-70, since then I have had a negative ANA and scl-70 (from a different lab), and now a postive ANA. I just don't know anymore.

#18 truman

truman

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 625 posts
  • Location:NJ

Posted 08 June 2009 - 04:31 PM

Hi Margaret:

Alive and well and the foot finally healed a month ago due to tremendous efforts of the wound care center. Still have my problems, steps a real difficulty but I'm getting there. Thanks for asking.

Tru
Tru

It is what it is...........

#19 jefa

jefa

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,325 posts
  • Location:Scotland

Posted 08 June 2009 - 10:05 PM

I'm glad you finally won that battle, Tru. Getting connected with that wound care center was a great move for you.

I do hope you have similar good fortune with your rehabilitation. I will keep you in my thoughts for continued strength and peace.
Warm wishes,
Jefa

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)