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How Long Have You Been Diagnosed

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Here's a few questions...

How long have you been diagnosed?

Do you feel your disease is currently progressing?

Do you feel better now that you are on meds?

Do you feel you have it under control?

What is your main symptom now?

What was your main symptoms at time of diagnosis?

 

I've been diagnosed since May 05 but I've had symptoms beginnning around 1996. It began with Raynaud's, the heartburn, high ANA,then finally what sent me to the dr. was bloated stomach and shortness of breath.

 

According to my tests, my lungs may be progressing but I actually feel better than I did one year ago. I feel like I have it managed well if I go by the way I feel, but when I see tests results, they discourage me.

 

My main symptom even with the meds taken, is shortness of breath and needing oxygen, stomach dismotility and the random Raynaud's flare up. Oh, and being exhausted all the time.

 

 

Overall, I do feel much better than I did one year ago, but I am unsure how I"m doing internally.

Jennifer

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Hi Jennifer,

 

I was diagnosed in January this year. My first symptoms, hairloss, muscle pain, fatigue, positive ANA, came in mid 1998. What FINALLY sent me to a rheumatologist was a new doctor! :D and puffy hands and knees.

 

I've been on Cellcept since Feb. I do feel better - less fatigue, less muscle pain than before.

 

BUT I also feel like it is progressing. Maybe slower than it would without Cellcept but how would ya know?

 

The reasons I feel like it is progressing is because right now I have more gastro/esophageal problems, SOB, and skin tightening in my face. I do not feel like it is under control.

 

My main symptoms at diagnosis were stiff, puffy hands, muscle pain and fatigue.

 

According to my tests my lungs may be progressing too. I've started some breathing exercises and I'm hoping to improve my next PFT in Jan.

 

Overall I too, do FEEL better than one year ago but am still worried about progression on the inside. I think since fatigue and muscle pain were my most debilitating symptoms and those have subsided, I can deal with the other stuff because even though its serious, its not as physically debilitating on a daily basis as fatigue and muscle pain is.

 

Hope I answered all your questions.

 

Take Care,

Barefut


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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Great questions Jennifer!

 

Here's a few questions...

 

How long have you been diagnosed? I found out that I had sclero and dermatomyositis about 5 months ago.

 

Do you feel your disease is currently progressing Yes!! It seems every week I find out I have someting else wrong.

 

Do you feel better now that you are on meds? To a point I feel better. I take meds for my reflux so thats helping some. other then that I am still playing with meds to see that is going to work for me.also I am still going through testing so I am not on some meds I should be on.

 

Do you feel you have it under control? not yet :(

 

What is your main symptom now? PAIN!! :angry:

 

What was your main symptoms at time of diagnosis? Myt skin had tirned ot leather on my chest and my face had changed color. I went to a dermatoligest( sp ) and he did a skin biopsy.. that was the start to all this.( I am about to post about everything going on with me)

 

I can't wiat to see what others reply to this.

 

Hugs,

Patty


Hugs,

Patty

 

If Life hands you lemons, make lemonade.

 

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

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Hi Jennifer,

 

I've only been diagnosed for 3 weeks with systemic scleroderma sine scleroderma. I think my first symptom was muscle pain/weakness back in the late 90's. What finally got me the diagnosis was a pulmonary consult due to shortness of breath and dry cough. That led to a referral to a great rheumatologist and eh, voila! Do I think I am progressing? Yes. More shortness of breath, more GI stuff. Have the medications helped. Some. The prednisone helps with the pain, the GI meds with the GI symptoms. The doctors will monitor with PFTS on a 3 mo. basis and if we get clear signs of progression, then on to CellCept or Imuran. Do I think I have it under control. No, not yet. Main symptom now? Shortness of breath and some more hand problems.

 

Good questions for a self-check! Ta!! Stay warm since it is nearly winter every where but in the land of the Southern Cross.

 

JJ-Knitter

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Hey Jen!

 

Here goes:

 

How long have you been diagnosed? - Jan. 2000

 

Do you feel your disease is currently progressing? Yes- more fatigue and pain

 

Do you feel better now that you are on meds? Better than I was yes, if I miss a day or two of plaquenil, I can't move.

 

Do you feel you have it under control? Ummm my doctor thinks so, so yes *fingers crossed*

 

What is your main symptom now? Fatigue, joint and muscle pain, GERD, very slow moving bowels.

 

What was your main symptoms at time of diagnosis? SEVERE PAIN in shoulders/neck, tired.

 

Love ya! Sweet


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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I was diagnosed January 2005 after years of different medical problems. I don't seem to be progressing much this past several months. Things seem to flare up and stick around for several months or weeks then disappear for a few weeks then come back. I feel much better on some of the medicines I'm taking at the moment. I don't know if we are ever in control of what is happening. Seems like we think we have something taken care of and something else pops up or things settle down and then come right back. My main symptom at the moment is my lungs. Inhalers aren't doing the trick anymore. I will know more after seeing my doctor on the 30 of November. My pft's weren't very good. Main symptom at diagnosis was severe bowel problems with gastro paresis, esophogeal (gerd), and carpal tunnel which required surgery. I am fighting severe itch and fight fatigue. If I take meds for the itch I am even more sleepy and fatigued. Yin and Yang. Mostly dental issues the past 6 months with the TMJ and trigeminal neuralgia, 2 root canals and 2 caps on what looked like perfectly good teeth, gone bezerk. Things are starting to settle down hopefully. We are getting some interesting comments and posts. We will all learn a lot through each other. Sheryl


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Hey All,

How long have you been diagnosed? Diagnosed with diffuse sclero and polymyositis August 2003, symptoms started Oct 2002

 

Do you feel your disease is currently progressing? Yes - recent lung problems, SOB

 

Do you feel better now that you are on meds? overall yes, but when I switched meds recently I had 3 horrible weeks and went back to the old meds

 

Do you feel you have it under control? I thought I did until the recent lung problems, so NO, it's not under control

 

What is your main symptom now?shortness of breath and inability to move faster than a mosey

 

What was your main symptoms at time of diagnosis? Oh goodness - LOTS - pneumonia, increasing weakness, rapid weight loss, couldn't swallow, hard time breathing, hands curling, Raynaud's

 

Big Hugs,

Janey


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Jennifer,

 

I was diagnose Sept 05, with diffuse scleroderma. My first symptoms were swollen and very painful hands beginning in April 05. My symptoms have pogressed so fast that I had to quit work in march 06, my Do cor wanted me to quit in December....but I am stubborn. Currently all 10 finges are contracted at the first knuckle with one digital ulcer. My forearrms and upper arms are so tight that it is nearly impossible to draw blood - I hate doing that so I put it off...

My thighs, calves and ankles are moderatley involved. My lungs have spome fibrosis and I have no signs of PAH.

 

I have been on cellcept skince March 05 and feel that finally in the last month or so the disease may be slowing. Most days I have about 5 good hours - I save my energy for when my teenager gets home from school and dinner time. I am on a med for pain, which has improved the quality of my life tenfold. The other source of releif from pain comes from playing classical music while I read.

 

I do have mild to ,severe lung involvement and am not comfident that is under control. Recentl I had a procedure where the flush your lungs with slaine and look at the cells under the micrscope. This procedure should tell the DR's if the sclero cells in my lungs are active or if the cllcept has helped. Waitng for results....

 

Boy that got a little long winded sorry!

 

Lori

 

Currently, my hands are my biggest problem typing is painful and slow due to my contractures. I miss being able to wear pretty clothes - for ease of use I have to wear all stretch waistband clothes YUK! I dress like an old lady.

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Hi Everyone,

 

How long have you been diagnosed? About 14 years

Do you feel your disease is currently progressing? Yes, somewhat. I was diagnosed with AIH this year and I notice little changes all the time.

Do you feel better now that you are on meds? Not really, but if I wasn't on them I would feel ten times worse! I am hoping to go on Cellcept or something like that at the end of the month but it depends on my liver.

Do you feel you have it under control? To the best of my ability. You can only do so much.

What is your main symptom now? Raynaud's, bowel issues, pain and shortness of breath.

What was your main symptoms at time of diagnosis? Raynaud's and swollen fingers!

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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Hi Jennifer:

 

Here's a few answers...

 

How long have you been diagnosed? About 3 years. but Raynaud's started about 10 yers. ago....

 

Do you feel your disease is currently progressing? I don't think so...

 

Do you feel better now that you are on meds? Yes, the Raynaud's is better with the Norvasc and my skin did improve after a 6 month treatment with CellCept.

 

Do you feel you have it under control? This disease is so sneaky I feel it's always one step ahead of me...

 

What is your main symptom now? Raynauds.

 

What was your main symptoms at time of diagnosis? Exhaustion, skin tightening, hair falling out, muscle pain...

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How long have you been diagnosed? Interstitial Lung Disease caused by Systemic Scleroderma, Aug 2006. I've had blue fingers probably Raynaud's since I was 1995.

 

Do you feel your disease is currently progressing? Yes, but my doctor is taking active measures (Cytoxan) to halt its progression.

 

Do you feel better now that you are on meds? Yes. I better I take too many meds not to feel better.

 

Do you feel you have it under control? Getting there. One day at a time.

 

What is your main symptom now? Fatigue, Chills - Raynaud's, My lungs – coughing and the inability to walk long distances without being winded.

 

What was your main symptoms at time of diagnosis? Dry cough for 1.5 years and severe fatigue. Thought it was asthma, but after testing was passed on to a pulmonologist who instantly saw that I had puffy tight skin and inconsistencies in my lung x-ray.


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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hi Jen,

answers to questions...

 

How long have you been diagnosed?

*2005

Do you feel your disease is currently progressing?

*a little, symptoms change, old ones come back, new ones show up!

Do you feel better now that you are on meds?

*yes, for sure.

Do you feel you have it under control?

*sometimes. But as I said before, when new symptoms show up, it is a new pain to endure.

What is your main symptom now?

*poor liver function, fatigue, swelling and stiffness in the AM, migraines, Major heartburn and reflux

What was your main symptoms at time of diagnosis?

*PAIN all over but mainly in my shoulder blades, chest and neck. Major and constant migraines, nausea almost every day, heartburn, bowl and bladder issues, muscle weekness in arms, and legs, sharp pain in knees and hips....just feeling flu-like and run over almost every day! That made my Dr. run tests to find a high speckled pattern ANA and positive SCL70 antibodies that didn't change...then we started on the meds.....finally!


*WestCoast*

 

********

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I was diagnosed in May of 2004, after going to my doctor for the Raynauds. I had a positive ANA and a elvelated Scl70 and was diagnosed with diffuse scleroderma. I have not noticed any progression at this time.

I am not on medication at this time. My main symptom was and still is raynauds.

In the fall of 2003 I had carpal tunnel like pain and developed shingles. I think that I developed scleroderma sometime tin the fall o 2003.

 

Enjoy this site and wish everyone the best, deeter

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Hi Deeter,

 

I see that this is your first post here, so welcome! It is good to have you join us, but sorry it is because of your diagnosis of scleroderma. I am happy to hear that it hasn't progressed since diagnosis.....that is great news! I am sure you will find everyone here is very encouraging and supportive and willing to provide advice and information when we can. I hope you will come here and post often.

 

Warm wishes,

Heidi

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Hi Jennifer,

 

I will try to answer your questions...

 

How long have you been diagnosed? I was officially diagnosed in 1994, with CREST, diagnosis broadened to Limited Systemic Sclerosis in 2002, at that time I was also diagnosed with Pulmonary Arterial Hypertension.

Do you feel your disease is currently progressing? The Scleroderma itself (the basic symptoms) is not, the lung disease is.

Do you feel better now that you are on meds? I do feel much better on the medications that I am on, although none of them is directly for Scleroderma.

Do you feel you have it under control? Yes, most days it is well controlled.

What is your main symptom now? Shortness of breath with exertion, fatigue, Raynaud's, muscle and joint pain.

What was your main symptoms at time of diagnosis? The symptom that started the quest was fingers that would not warm.

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