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First Visit With The Specialist!


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#1 ErinF

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Posted 10 April 2007 - 03:41 AM

Well, I saw the sclero expert yesterday! First I saw the resident, who was great, and then I saw the "boss" (as the resident called him) and he was very nice and thorough as well. He recommends that we "wait and see" how things progress. So he said I'm "sclero free" right now (but have Sjogren's and Hashimoto's and possibly Dermatomyositis--he was running a full myositis panel) but that we have to be vigilant, especially over the next year. They drew more blood and did a few more x-rays, so I'll know more in the next week or so, but he felt that the best thing to do right now is assume that I don't have sclero and won't get it (YAY!) but that I have to be very watchful for any other consistent symptoms and changes and get into see him as quickly as possible if that happens. He said that given my family history of autoimmune connective tissue disorders, it's not at all unusual for me to have Scl 70 antibodies and they may mean nothing. I have perfectly normal nailfold capillaries and he said that's a sign I'm sclero free. The rheumatologist said he was going to dictate a letter with specific instructions to my general practitioner (whom he commended for being so thorough in her referral letter and blood tests) about the types of things we need to look for and how to treat the dermatomyositis if that is indeed what he concludes I have. He said that going to an endocrinologist for my thyroid is my choice--he said most won't treat Hashimoto's and that essentially I just have to wait until the thyroid dies...that's a pleasant thought. So my husband and I did a happy dance last night and my friends are throwing a "NOT Scleroderma Party." So let's just keep positive, happy thoughts and assume that these silly Scl 70 antibodies are just the other stuff and will never lead to scleroderma!!!

Warm hugs,
ErinF

#2 jefa

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Posted 10 April 2007 - 04:05 AM

This is a wonderfully positive outlook. It looks like you have a great team at your disposal, including your family and friends. I am very happy for you and hope all continues to go well.

#3 WestCoast1

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Posted 10 April 2007 - 04:08 AM

Hello ErinF~
May I be the first to congradulate you on your success with the doctor. and for your "non" scleroderma diagnosis! This is GREAT news. I really appreciate your post and it is so helpful to read about the things you learned at your apt.

Hugs~ :D
*WestCoast*

********

#4 Heidi

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Posted 10 April 2007 - 04:15 AM

Hi Erin,

That is great news!!! I am so glad that you were pleased with both the resident and the boss. It sounds like they were very thorough and that your general practitioner is right on top of things! Awesome! That is half the battle. Please do let us know how all the blood work turns out.

Warm wishes,
Heidi

#5 Claudia-DR

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Posted 10 April 2007 - 04:36 AM

Hi Erin!

I'm jumping in to wish you congratulations on your appointment. I'm so glad that the doctors. who are treating you, apart from their proffesional expertise, are also compassionate, caring beings. That means a lot.

By the way, I have a positive SCL-70 too. Supposedly it's a marker for diffuse sclero and lung fibrosis. And guess what? I have limted sclero and healthy lungs (knock on wood). Just because the lab says it's there it doesn't have to mean anything.

Keep healthy!

Claudia

#6 nan

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Posted 10 April 2007 - 10:14 AM

Erin,
I am so happy for you!!!! :D Take care of yourself.
Nan

#7 janey

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Posted 10 April 2007 - 10:41 AM

Erin,
I'll definitely attend your NOT scleroderma party if not in person, in spirit! What a relief for you AND your husband. Any illness takes a true partnership to make it through so I'm thrilled that you did your happy dance together.

Thanks for sharing such great news. We're all happy for you. :D

Big Hugs,
Janey

#8 summer

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Posted 10 April 2007 - 06:46 PM

Hi Erin,
This is such great news, you and your husband must be so relieved.
I've been wondering how your visit would go and am pleased that all went well.
If you don't mind me asking besides the positive SCL70 blood test was there any other symptoms (like swollen fingers) etc that would make your doctor think that you has Scleroderma?
Anyway I'm glad that something positive came out of the visit.

Kind regards
Celia B)

#9 ErinF

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Posted 11 April 2007 - 03:31 AM

Hi ced,
When I first went to the doctor, it was because I had awakened a few times in the night with hands that felt like they were on fire and they felt really, really swollen (but weren't). I still sometimes wake up with hands that feel swollen but they aren't. My rings fit exactly the same, but my hands are sore enough that it feels weird to make a fist. Also, for about 15 years I have been experiencing really cold hands, and then with no warning they would start to burn (no color changes, however). The day I went to see my general practitioner (and this was a new patient visit) I also had this weird rash that I get (I had been diagnosed several years prior with rosacea) and my eyelids were purple. She had read through my records and saw that I had visited several eye doctors about severe dry eye. So she ran the autoimmune panels. What Dr. M up in Madison said is that because these symptoms aren't consistent--I've had them for years, I can go weeks without having any and they seem to go away on their own--he won't diagnose me with sclero, despite the blood tests. I have to admit this does scare me--I pressed him and asked him if I was early in the disease and that it would come out roaring at some point in the future and he said there was simply no way to know that. He then went on to talk about how diseases like this can't be treated until there are symptoms to treat. My lungs were fine (PFT was normal), I have no swallowing problems other than the pressure of a slight goiter I've had since I was 25, and my nailfold capillaries were normal and my sed rate is normal as well, so no inflammation going on. He thought I was an interesting patient, but felt my symptoms were more consistent with Sjogren's and Dermatomyositis (and he emphasized that Scl 70 does show up in other connective tissue diseases without it ever being sclero), but he also talked for a while about a disease called Myasthenia Gravis (I also have drooping eyelids) and had blood drawn for that. The Sjogren's and Dermato freak me a bit, because I know how much they correlate with scleroderma. At the end of the visit, Dr. M said the following: "Is there a chance that you will develop scleroderma? Yes. Is your chance greater than the "average" person? Yes. Is it a guarantee? No. You don't fit the criteria right now so we're just going to be vigilant in checking your skin, lungs, etc." Before my visit, I was really worried about this being the diagnosis, meaning no diagnosis. I know that there is a problem with getting sclero diagnosed properly and early. But this doctor is involved in the SCOT trials and other trials, and has worked extensively with sclero patients so I am going to take a leap of faith and trust his judgment. He's confident that my doctor here at home will monitor me closely (we're doing every 3 months for check ups) and he said that if I have ANYTHING like itching, skin thickening, shortness of breath, etc. I am to call and get in ASAP. If I get the weird purple eyelids again I am to call and get in immediately so he can see them (I did take pictures last time so he looked at those.) While commending my doctor for being thorough, he did sort of chastise her for relying too much on antibodies. He said that with a family history like mine (we have autoimmune diseases everywhere) wacky antibodies are to be expected. He did have more blood drawn, and in addition to the myositis panel, he was checking the Scl 70 again, and also testing for myasthenia gravis. I hope to hear back by the end of the week. As I said, there's a little voice inside me that says I'm not completely in the clear yet and may never be, but this news is probably the best I can get yet right so I'm clinging to it with rabid intensity. :lol:
Do you guys think it's a mistake? My sister was screaming at me to get a second opinion from a different sclero expert.

ErinF

#10 TJ903

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Posted 11 April 2007 - 05:15 AM

Erin

Just wanted to jump in also! I'm doing a happy dance for you right now!!

TJ903

#11 Heidi

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Posted 11 April 2007 - 05:31 AM

HI Erin,

It sounds to me like this doctor was very thorough and knows what he is talking about. I think he is so right in telling you that he can't do anything but treat symptoms if and when they appear. I really doubt another sclero expert would tell you anything differently. I have been in a wait and see pattern for almost 6 years now (and my first symptom that had my general practitioner test my ANA and send me to a rheumatologist was the burning, tingling hands at night). My rheumatologist is treating my symptoms, but I don't have a firm diagnosis of anything, as he says my disease has been all over the place....but I never have enough symptoms to fit any specific diagnosis. It may give you peace of mind to see someone else...but my guess is you will hear the same thing, have to give more blood, etc. etc. etc.

Warm wishes,
Heidi

#12 Shelley Ensz

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Posted 11 April 2007 - 06:43 AM

Hi Erin,

That's an interesting question. It sounds to me like he did right by you. He's not only looking at possible scleroderma but also at any/all other illnesses you may have. It's impossible to diagnose scleroderma until enough telling symptoms develop (like pulmonary fibrosis, tight skin, etc.), and it cannot be done on the basis of antibodies alone. The truly important thing is that he will be following you closely and looking at your entire health, and not exclusively at scleroderma issues.

I'd definitely encourage a second opinion if he had flatly said you don't have scleroderma and never would. Or if he had ignored all the symptoms outside of the strictly-scleroderma realm. Or if he had said he wouldn't need to see you again.

It sounds more like you are in the early stages of autoimmune disease(s), when the symptoms can be fickle and all over the road for some of us. You may also have multiple autoimmune illnesses, and I know from first-hand experience how confusing that can be, for both the patient and the doctor. In any event, Sjogren's and Dermatomyositis, plus possible Myasthenia Gravis, would be more than enough for anyone to deal with. Although you are surely entitled to a not-scleroderma-for-this-moment happy dance you'd also need some quiet time for reflection on how to adjust to all of your symptoms/illnesses.

We cover scleroderma "and related illnesses" which encompass Sjogren's, Dermatomyositis, and Myastenia Gravis, too. See our Autoimmune Diseases page at:
http://www.sclero.or...ted/a-to-z.html
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#13 Gi Gi

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Posted 11 April 2007 - 01:35 PM

Hi Erin,

Great news! I'm glad you were happy with your visit and I adore your positive attitude. We'll all hope for the best.
Your Friend,

Gi Gi

#14 summer

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Posted 12 April 2007 - 12:16 AM

Hi Erin,
I also agree with Heidi and Shelley. I don't think you need a second opinion, but I would keep my eyes open and watch for any other signs that Sclero might be lurking about. Take care and relax a little now you have been given good advice from a lot of people.

Kind regards
Celia :)

#15 Jessica

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Posted 12 April 2007 - 09:31 AM

That is great news! It gives me hope as well. Hopefully, I will have the same out come when I go to the doctor on Monday! So, I just need to be on the outlook for changes in skin, throat problems, and breathing?

#16 relicmom1

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Posted 15 April 2007 - 01:29 AM

I too, am very happy for you to have beenpleased with your first visint. But as it ws said, please get a second opinion!!! I am 49 years old and my ride on this rollercoaster came ablut15 or so years ago. The Raynaud's of the hand and feet (mu husband use to tell me that our local funeral home was looking or their missing body!! They were so cold, it actually hurt him for me to touch him with my cold hands and feet. I've been thru 3 rheummys and hav finally found one who will actually LISTEN to what I have to say and make the adjustments that are necessary. The firts diagnosis I was given was Rh arthritis , then it changed to lupus and when I finally hit the third doctor she said honey you have someting called CREST and she explained it all to me I have heart and lung involvment, esophagus, stomach and intestine involvement,kidny function and liver function lab work are now showing some involvement. I had to stop working back in 2004 and that Social Security nightmare was horrible!!!!I was finally awarded benefits for me and I have one minor child, but in the time of waiting, our credit was totally destroyed. Fortunately we didn't loose the house.Through all of this I have the most amazing husband!! we were just teenagers when we met I was 14 and he was 17, and we've been together ever since. Married in 1978, had our first boy in1984 and our dau ghter in 1990, Had the nice house we wanted for our kids to
Peace :)
Barbara aka relicmom1