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How Long Have You Been Diagnosed


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#1 Member

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Posted 14 November 2006 - 03:18 AM

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

#2 barefut

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Posted 14 November 2006 - 03:52 AM

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

#3 Patty

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Posted 14 November 2006 - 03:55 AM

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.

#4 JJ-Knitter

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Posted 14 November 2006 - 06:53 AM

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

#5 Sweet

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Posted 14 November 2006 - 07:43 AM

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)

#6 Sheryl

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Posted 14 November 2006 - 03:24 PM

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

#7 janey

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Posted 14 November 2006 - 06:03 PM

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

#8 LoriNC

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Posted 15 November 2006 - 02:36 AM

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.

#9 LisaBulman

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Posted 15 November 2006 - 02:58 AM

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
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#10 Claudia-DR

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Posted 15 November 2006 - 04:57 AM

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...

#11 peanut

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Posted 15 November 2006 - 10:48 AM

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...

#12 WestCoast1

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Posted 15 November 2006 - 01:25 PM

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*

********

#13 deeter

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Posted 08 December 2006 - 01:30 PM

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

#14 Heidi

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Posted 08 December 2006 - 03:14 PM

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

#15 LizzyC

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Posted 09 December 2006 - 12:35 AM

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.

#16 Heidi

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Posted 09 December 2006 - 05:55 AM

Hi Lizzie!

It is so good to see you here on the fourms! Welcome! I am glad you have found us and joined us. I hope you will come and post often.

Warm wishes,
Heidi

#17 jlf

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Posted 09 December 2006 - 06:45 AM

Hello All,

Let's see: How long diagnosed? 18 years

Feel better on meds? NO

Feel it's under control? Very out of control. This year have progressed from thyroid disease to thyroid distruction. Advanced gastropareses, Hypercoag problem with lupus anticoagulant antibody,2 TIA's.

Main problem now? I feel like I've given up on the idea that I'll be ok. Too many symptoms, too much pain, too nauseated, too many doctors, just plain old too much of it all. Now that sounds like a real pity party, and I don't mean to come across like that - but I'm just sick and tired of it. I've been sick my entire adult life. I have to add, I still feel life is worth living.

Main symptom at diagnosis: Here's the kicker - none. It was found quite by accident when I could not get better after surgery.

My added question: Greatest concern at this time? How much longer I'll be able to work & the problems attached with going out on disablity.

Good day to all,
JLF

#18 HeatherT

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Posted 10 December 2006 - 10:04 AM

Hi Everyone,

How long have you been diagnosed?
**I was diagnosed 3/2006 with a positive SCL70 test result.

Do you feel your disease is currently progressing?
**Yes, particularly fast since I switched from MTX to Cellcept.

Do you feel better now that you are on meds?
**Yes, reflux is under control but the joints, and skin are not better. I have only been on Cellcept for about 6 weeks.

Do you feel you have it under control?
**No

What is your main symptom now?
**Skin tightening on hands, wrists, face, neck, chest, legs and way worse joint pain everywere with tendon rubs.

What was your main symptoms at time of diagnosis?
**Swollen hands, carpal tunnel, sore knees, and acid reflux

#19 Heidi

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Posted 10 December 2006 - 02:52 PM

Hi Heather,

I just noticed that this was your first post, so I wanted to take the opportunity to welcome you to the forums. I am glad you found us but sorry it is because of having scleroderma. I do hope that the cellcept starts working for you. I also hope you will come here and post often and let us know how you are doing.

Warm wishes,
Heidi

#20 Elehos

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Posted 12 December 2006 - 02:31 AM

Hi Jennifer,

Guess I'll throw in my two cents as well...

1. How long have you been diagnosed?

A diagnosis of osteoarthritis came in back in 1985. In June 2006, one doctor gave a diagnosis of lupus and another gave a tentative diagnosis of sclero. The last few symptoms to give the full diagnosis on the sclero just came in last Friday, but at least now I know. It took long enough (lol). How many just nodded "yes" to that one?

2. Do you feel your disease is currently progressing?

Yes, sometimes day by day (minute by minute?), then it might slow a bit for a couple of months.

3. Do you feel better now that you are on meds?

I'll be heading to the doctor tomorrow to ask about prednisone. I can't take any NSAID's anymore, and an herbal anti-inflammatory that has worked for years isn't strong enough at this point. We'll see how it goes!

4. Do you feel you have it under control?

Uhhh...no. You know how junker cars are; as soon as one thing seems like it's fixed, something else breaks. It has been about 34 years now dealing with various CTD's and FSHD (a mild form of muscular dystrophy--seems like it's worsening again lately), so I joke around about heading to the junk yard for parts. Laughter truly helps when you really want to scream.

5.What is your main symptom now?

Main symptom? Pain from head to foot, tendons that are inflamed and tightening up more every day, medium to large masses (feel like cartilage or bone) in the groin, armpits, and shoulders that the doctors haven't really given a name, more areas of darkening and thickening skin, calcinosis on my upper to mid back, shoulders, and under the eyes, fatigue.

6. What was your main symptoms at time of diagnosis?

Gastric problems, often severe (oh, how many relate to that!), fevers, muscles tightening around the trunk of my body making breathing difficult, difficulty swallowing, hair loss...Wow, re-reading this makes me want a nap (lol). A nice hot shower can only help, then onto life and ignoring as many pesky symptoms as possible.

Thanks for asking us what's going on! It helps to know you're not alone, and there are some on this board that are suffering horribly, and maybe this can offer some encouragement that they're not alone.

Warmest wishes to you,
Elehos



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