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Sclero doctors


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#1 Margaret

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Posted 17 February 2013 - 03:49 PM

Hi Everyone,

 

I think it's time to take Gareth to visit Dr Metzger, in Pittsburgh.  He hasn't been in 6 yrs and is having numerous medical issues.  When I went to the Sclero list for specialists, to get the phone number, etc,  he's not listed. Does anyone know if he's still taking sclero patients?  Has anyone been to see him lately?

 

Thanks,

Margaret



#2 Margaret

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Posted 18 February 2013 - 06:42 AM

Oh, it would help if I Googled the right name!!     :emoticon-dont-know:      Medsger....not Metzger.  Found him. :emoticons-yes:

 

Margaret



#3 Shelley Ensz

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Posted 19 February 2013 - 12:10 PM

Hi Margaret,

 

My guess is that Medsger has one of the most popularly misspelled names.  For others who are looking for scleroderma experts, we have various lists available here: Scleroderma Experts.

 

:emoticons-group-hug:


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.

#4 Margaret

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Posted 19 February 2013 - 02:03 PM

Hi Shelley,

 

He's not listed under your expert panel anymore for PA, just a Dr. Sergio A. Jimenez, Jr., in Philly.  I may have to use him, though, because when I called Dr. Medsger's office, he's not taking new patients and Gareth would be considered a new patient since he hasn't seen him in five years.

 

Gareth has had a couple of REALLY bad days, pain wise.  I Googled *does Sjogren's cause pain* this morning.  Oh,  my.....the articles that came up!!    :(  What I don't understand is the lack of empathy by his current rheumatologist and internist.  He was diagnosed with SICCA several years ago and I read where the med of choice for Sjogren's Syndrome is Plaquenil.  Well, he's been on Plaquenil for almost 6 years now and still developed SICCA/SS.  By the way, are they the same SICCA and Sjogren's?  :emoticon-dont-know:   It's not just the fatigue, but the physical and neurological aspects of this that concern me.  So,  he had a  + ANA (speckled pattern) and + anti-RNA Polymerase 1/111  six yrs ago.  Now, he has a - ANA, but a + SSA, +SSB, and +Jo-1.  I don't understand all this!! :emoticon-dont-know:

 

Thanks for your help the other day....it's so much appreciated!!   :emoticons-thankyou:

Take care, Everyone.

Margaret



#5 Shelley Ensz

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Posted 21 February 2013 - 11:12 AM

Hi Margaret,

 

I am so sorry that Gareth has had so much pain lately. Unfortunately that is very common in connective tissue diseases, and probably very under-treated as well.

 

I asked my doctor about SICCA and Sjogren's once, because the terms seemed to be used interchangeably in my medical records.  He explained that the terms are basically the same, but doctors often use SICCA to mean that the Sjogren's is secondary to another illness, and they use Sjogren's if it is the primary illness.

 

Antibodies are so confusing because they can appear and disappear, often without making any sense at all. That's probably why they try to keep the focus on symptoms when it comes to autoimmune diseases.  The antibodies can be interesting, but people can have very severe autoimmune disease without any antibodies at all.

 

I hope Gareth is feeling a bit better today.  I'm sending warm hugs for both of you.

 

:emoticons-group-hug:


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.

#6 Margaret

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Posted 21 February 2013 - 06:14 PM

<<He explained that the terms are basically the same, but doctors often use SICCA to mean that the Sjogren's is secondary to another illness, and they use Sjogren's if it is the primary illness.>>

 

So, the Sjogren's is caused by the UCTD (thus secondary) or the Sjogren's is the second(ary) autoimmune issue? :emoticon-dont-know:  :emoticon-dont-know:

 

 Either way, he was diagnosed with SICCA a couple of yrs ago, by his Rheum doc.  She never told me that the two were interchangable and that there were other issues with SS that I never knew about.  I just (wrongly) assumed it was only the dry eyes and dry mouth.

 

I'm sloooowwwlllyyy learning............ :emoticons-yes:

 

Hugs back to ya, Lady......... and   :thank-you: !!

Margaret



#7 Shelley Ensz

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Posted 25 February 2013 - 12:14 PM

Hi Margaret,

 

I am not on entirely solid ground here, so please correct me if I am wrong about any of this.

 

I should have been more explicit in my reply. When I was talking to my doctor, it was in regard to specific references in my own medical file, where SICCA and Sjogren's appeared to be used interchangeably.  I have Sjogren's along with a collection of other autoimmune and connective tissue diseases, so my umbrella diagnosis is Multiple Autoimmune Syndrome (MAS).

 

It is my understanding that sicca can refer generically to simply dryness of the eyes and mouth, or it can be used as Sicca Syndrome in which case I believe it is the same as Sjogren's; they both have the same ICD diagnosis code.

 

Because doctors can use the term referring to just dryness or as another term for Sjogren's, it is very important to understand the context in which it is used.  Are they referring only to the symptoms or are they referring to it as a disease?

 

UCTD stands for "undifferentiated connective tissue disease".  I believe Sjogren's is classified as a connective tissue disease, so if someone has Sjogren's they would then have "connective tissue disease" ( technically, the "Undifferentiated" would be dropped).

 

Since it sounds like Gareth has symptoms of Sjogren's plus Sjogren's antibodies, it would be interesting to find out whether or not they have officially diagnosed him with Sjogren's.  And if not, why not?  For example, he may have obviously dry eyes but maybe they haven't bothered to prove they are dry with a Schirmer's test.

 

Never assume that what doctors say and what you hear them say are the same thing. If medical records are not online, where you can verify the diagnosis quite readily, then you may need to request the records and study them carefully.  Look closely at the numeric diagnosis codes, which is what they use to bill your insurance.

 

I was totally shocked when I had finally collected all my medical records, both by what I found and what I didn't find.  A surgical biopsy had proven that I had interstitial cystitis over 30 years before I was officially diagnosed with it again; the hospital biopsy report had somehow just been overlooked or misfiled. My doctors reported "suspected connective tissue disease" many decades before it was finally confirmed.  I could go on and on, but you get the drift.

 

What matters most of all is what Gareth's doctor intends "sicca" to mean.

 

:emoticons-group-hug:


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.

#8 Margaret

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Posted 25 February 2013 - 03:44 PM

<<maybe they haven't bothered to prove they are dry with a Schirmer's test.>>

 

Hi Shelley,

 

Gareth flunked the Schirmer's test a couple of years ago.  He goes in tomorrow, to the eye doctor, for his yearly exam.  Under Gareth's medical health history page, they have listed Hypothyroidism, CREST syndrome, Diffuse diseases of Connective tissue (??),  RNA-Polymerase 1/111 +,  ANA +, Restrictive lung disease, Dysphagia, GERD, and high IgA level.  This would be information put in by his rheumatologist, primary care physician, and cardiologist since they are all with the same medical group.  Another medical group handles all his immune deficiencies....Ig G 2/4 and MBL deficiency.

 

Thanks, Lady     :thank-you:

 

Take care, Everyone,

Margaret



#9 Shelley Ensz

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Posted 25 February 2013 - 07:46 PM

Hi Margaret,

 

It is my understanding that CREST Syndrome most often refers to Limited Systemic Sclerosis, which is limited scleroderma, which is, to put it simply, scleroderma. 

 

The only thing "limited" about it is that if there is any skin involvement, it is limited to the hands and/or face.  It can affect the entire body.  In general it tends to be milder than diffuse scleroderma, with some caveats. 

 

Sjogren's/sicca is very common in systemic scleroderma, a fair number of us are also diagnosed with Sjogren's, or sicca (dryness) symptoms.  I have both scleroderma and Sjogren's, and I can tell you that the Sjogren's is pretty much entirely ignored by my medical team, I think because it pales in comparison to scleroderma.  So you may not be getting very much attention on the subject from his doctors on that score, because they are more focused on other aspects of his care.

 

For more info, read Types of Scleroderma and CREST Syndrome. As I understand it, the diffuse connective tissue diseases are lupus, scleroderma, polymyositis, dermatomyositis, Sjogren's, and rheumatoid arthritis.


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.

#10 miocean

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Posted 26 February 2013 - 07:16 PM

Margaret,

I think you need a scleroderma specialist for Gareth. Problem is my specialist won't take a patient unless they have a diagnosis of scleroderma. (For some reason I cannot get the emoticons but this would be the thumping the head against the wall one.)

Please tell Gareth HI!

miocean
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