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Margaret

Gareth Update

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Hi Everyone,

 

Well, our long awaited visit to the Sclero specialist in Pittsburgh was Wed. and I am so disappointed. Basically, yes, Gareth has Esoph dismot., 18#weight loss, restrictive lung disease, and positve blood works. But.....he is not making any diagnosis because he doesn't have the Raynauds or skin involvement. He took 5-6 tubes of blood and wants to run his own tests and will get back to us. For this, we drove 5 hrs!!! No medications or nothing.

 

He sooooooooooo downplayed the whole Scleroderma disease itself. Sclero doesn't cause pain.....hear that you guys!!! I thought to myself, he should read this site someday!!! Sclero doesn't affect the voice or the brain/cognitive functions. Esoph dismotility is a nuicence but not life threatening. Obviously, he hasn't had a hard boiled egg stuck in his throat all day!!! I don't know.....very bummed when we left there.

 

So, now we will wait a little longer and see what his blood tests show. He did say that Gareth may be in pre-Sclero stages. His nurse was the nicest lady, though, and told me that sclero pts do have vocal issues.......go figure!!!

 

Take care, Everyone.

Margaret

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(((((Margaret))))) I am so sorry that this didn't go as you had hoped. I just had a bad visit with my dr so I really understand. I do not wish sclero on anyone but I do hope that you get the answeres that you so need. Living in limbo is so hard.

 

As for the sclero not causing pain, I beg to differ! Also I would love to meet this dr and let he tell me it won't effect my thinking because I lose my track of though all the time. I also lose words.I know I am not alone in this in the sclero world.

 

Please let us k now hwat the blood work showed.

 

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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Margaret,

I very sorry that you feel the trip to Pittsburgh was disappointing. It is possible that the specialist didn't want to jump to a definitive diagnosis until he was "sure" of what Garth is dealing with. Scleroderma and other autoimmune diseases are can be very difficult to diagnosis because these crazy diseases affect everyone differently.

 

I am no doctor, but I do however have to question a couple of comments he made -

You already know better about the "no pain" comment

On the voice thing, I had a real sexy voice for about a year - low and horse. Now I'm back to my high, squeaky voice.

 

Here at ISN we do have a page on Brain Involvement that you might check out before the next visit.

 

Raynaud's is not 100% guaranteed with sclero - 90- 95% which is close, but there are exceptions.

 

There is a type of sclero called Systemic Sclerosis sine Scleroderma (Diffuse Scleroderma Without Skin Involvement) that doesn't have skin involvement.

 

Sorry for all the links, but something in there might help prepare you for the next visit. At least he is continuing to test Garth to help narrow things down. Hang in there Darlin'. I think you'd rather have the right diagnosis that the wrong one.

 

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)

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Margaret,

I am so sorry you had such a bad experience. I had heard great things about that doctor. I am not an MD, but this is the worst pain I have ever experienced. Also, my brain has definitely been affected. I think that doctor needs some extra courses on scleroderma. I have esophagus problems also. Believe me it is not just a nuisance. Hang in there!

Nan

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Janey ,

 

Sine Sclero is what the local rheumatologist diagnosed him with in Dec after the blood work and espoh. dismotility. I guess since doctor said that diagnosis is 1/10,000 people, he's going to be sure. I think he mentioned that he has seen 2 in his years.

 

Take care, Everyone.

 

Margaret

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Margaret,

I just wanted to say that I have Sine Scleroderma and restrictive lung disease. I definitely have Raynauds...this is for sure. It probably took a long time for me to know I had sclero, and not just Gerd and Raynuads alone because of no skin problems.

It believe I had sclero (or pre sclero if there is such a thing) for at least 10 years and it was not diagnosed until it got into my lungs and caused problems for me.

I wish you and Gareth the best of luck. I am sure you are in good hands with the Dr. I kind of see it as a good thing that the Dr. is not quick to diagnose scleroderma becuase what if it's something else.

I am sorry he seemed a little "cold". Fortunately for me, I do not have joint problems.

Hope you both are feeling good today,

Jennifer

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Jennifer ,

 

That was another issue that he was surprised about....that Gareth has no joint pain/issues in his shoulders and hands. He had to be mistaken about the 'no pain' issue. Maybe he had other things on his mind. He checked G's arm/shoulder movements and kept asking him if it hurt!!! I don't know.....still waiting for his phone call. I know I heard him right, because I immediately thought of all of you and how much pain you guys are in.

 

I am keeping Gareth home tomorrow because the kid is acting schizo. He's swatting at bugs that aren't there and lashing out at 'things' behind his back. I am going to take him in to his primary care physician to check his ears and eyes. Anyone who has any suggestions as to what it can be, please feel free to chime in!!! Of course, there is no way for him to tell me what's going on!!!

 

Take care, Everyone.

Margaret

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Hello Margaret - I am so sorry for all that is going on right now. When you say he is slapping bugs, do you mean on his face & body? If so, I thought to myself that maybe it's the "itchies". I know that alot of us get it, there was a thread a while ago about walking through "cobwebs". You get these sensations, little spots that need to be scratched. I have a backscratcher available at all times, I have my kids scratch my back ALL the time.

 

Anywho, I thought maybe, just maybe, this could be what was happening? I hope things get better for ya. :)

 

kellyann

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Hi Margeret--

sorry about the appointment. it is so hard to travel, wait, and get 30 minutes of face time. Then to hear things you know are not true does shake confidence.

 

I'm no doctor for sure, but just because he's not making a diagnosis yet doesn't mean he's convinced the condition is not serious. This is just step one, it seems he has more things planned and wants more data.

 

Brain involvment is more common in Lupus or Mctd. Gareth may have that instead of "just" sclero. There's all kinds of autoimmune diseases with different patterns. Please try to see the brite spot... which is he wants to be sure and know what to do.

 

As far as meds... the plan of attack for autoimmune disease and treatments has been hastily decided in the past. And many so called meds turned out to be counterproductive or problematic in and of themselves (penecillimine, prednisone, cytoxan and infection)

 

This is a war which I'm sure you know. That appointment was just a battle, and more planning, visits, tests, and hopefully cutting edge strategy and treatment will ultimately make your son feel much better.

 

Hang in there

 

Michael in Florida

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