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Had Quarterly Apt - Confusing but Good Too

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#1 Peggy


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Posted 24 June 2008 - 06:26 AM

Well I had my quarterly appointment with my sclero doctor and my neuro doctor too. The first was with the neuro and he did his physical assessment. He found that my left side is weaker than the right. He ordered an ultrasound of my legs for blood clots, which there were none; he then did a skin biopsy; and an EMG. The EMG showed pretty much the same results as the last one. The muscle damage is a little worse and the neuropathy hasn't changed. He feels that all of these symptoms fall in the sclero and sjogren's and would defer to the rheumatologist. The I saw her and she is so confusing. She then ordered another lung function test that was the same as when done in March, which is some lung involvement.

The confusing part is she said I coming to the 2 year mark from when I was first diagnosed and "maybe" should be going into remission soon. That's where I am so confused as I told her that what happens then, the pain and fatigue magically just quit. She didn't really know. She also put me on Lyrica to try and see if that will help with the pain.

So I really didn't find out anything new only that I'm not worse off which is good. I just wish I felt better and I find it hard to believe that come September I will be "all better". That's what I don't get. When people go into remission are they back to normal and then the sclero symptoms hit again in the future; or whatever you are at when the remission comes is the way you will continue to be in the future. And when remission hits does the fear of heart and lung involvement disappear too and you don't have to worry about all of that?

Sorry this is so long but I would love to hear what you guys think.

Warm hugs,


#2 Shelley Ensz

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Posted 24 June 2008 - 07:11 AM

Hi Peggy,

There is no real way to predict how scleroderma will progress (or not) in any individual patient. Remission might be a rather strong or misleading term to use. But many of us report that the first 18 to 24 months were the worst, and then things began calming down a bit.

Usually that may mean that new symptoms, which sometimes pop up at an alarming rate the first year or so, have begun to quell. We may have started treatments that helped with some of the symptoms, and thus feel better. The skin issues may have stopped worsening, or even started to improve.

Most of us have to make significant long term lifestyle changes to adjust to living with the remaining fatigue and pain and various symptoms. It would be rather rare for it to all just evaporate into thin air...more normal to still have issues, still need monitoring, still be susceptible to complications...but still be able to say that in general, things are not as rapidly progressing or unsettling as the first year or two.
Warm Hugs,

Shelley Ensz
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#3 janey


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Posted 24 June 2008 - 07:47 AM

Ditto to everything Shelley said. Scleroderma is impossible to predict. Comments like what your rheumatologist said and things we read like "the first 36 months are the worst" - these are all based on the average. So there is going to be a lot of people with continuing worsening symptoms and others with improved symptoms.

Do you go back to normal? I'm only one person but I really don't think I'll ever be "normal" again, but then was I really normal to begin with? :lol: My doctors all tell me I'm in remission so now we are working to make the most out of a body with permanent damage. No - my lungs will never be perfectly clear and without fibrosis, and my heart's conduction system will certainly not repair itself. But it does look like the worst is over "for now" or maybe forever. Who knows? I can tell you that I getting stronger physically, so the polymyositis is under control.

Be thankful for being stable and not seeing things get worse. That should be an indicator that things are possiblly under control. Did your rheumatologist attribute anything to your IVIg treatments? What was the outcome with that?

It's all so confusing! I wish there was a simple answer to your question; however...

Big Hugs,
Janey Willis
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#4 truman


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Posted 24 June 2008 - 07:59 AM

Hi Peggy:

That seems a rather broad statement for the doctor to make, let alone with a time stamp. I do hope that for you, and maybe she's planting a little "seed" for you to emotionally count on. Not that it's bad, sometimes the mind needs a little "look forward to" jolt and the body reacts accordingly.

With remission, I doubt pre existing conditions such as damage would disappear. I would think more Raynauds, skin tightening, itching, etc.

All in all, I'd love to jump on that band wagon. Can't really guess when that threshold would come for me. Basically it's been about a year and a half since it all hit the fan.

Definitely keep me posted.


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

#5 Sweet


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Posted 24 June 2008 - 08:03 AM

Hi Peggy,

I am in the same thought pattern as Shelley. I don't believe there is way to predict a certain outcome, or put a time line on it. I think it's always good to think positively though, but not to ignore symptoms you are having.

Keep up the faith!
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#6 jefa


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Posted 24 June 2008 - 09:51 PM

Hi, Peggy. I'll join in with the others in keeping a positive outlook for all of us. If this helps turn things in any way, it is worth the effort. :D
Warm wishes,

Carrie Maddoux
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