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Tongue swelling/enlargement

Tongue

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#1 Knitterdi

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Posted 20 March 2013 - 07:02 AM

Has anyone experienced an enlarged tongue? I have been diagnosed with MCTD for many years. For the past several years my tongue has intermittently been enlarged. Now it is constant. A tongue biopsy showed collagen fibers entrapped in the muscle part of the tongue. They are now looking at scleroderma.
Your thoughts are appreciated.

#2 Joelf

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Posted 20 March 2013 - 12:51 PM

Hi Knitterdi,

 

Welcome to these forums!

 

I have to admit that I've never suffered that particular symptom myself, so can't advise you from my own experience. However, I've included a link to  Macroglossia (enlarged tongue) and also a link to our medical page on MCTD which I hope will give you some more information and help.

 

We may have other members who will be able to give you some first hand advice and now that you've found our forums, do please keep posting and let us know any further results you have from your biopsy or any other tests.

 

Kind regards,


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#3 Shelley Ensz

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Posted 20 March 2013 - 01:38 PM

Hi Knitter Di,

 

Welcome to Sclero Forums. I'm sorry you have MCTD and concerns about scleroderma.

 

Please keep in mind that I have no medical training at all, and verify everything I say with a reliable medical source.  As it happens, I don't recall having ever encountered this question before.  So I'd just have to presume that your doctors have a lot more experience in this particular area than I do.

 

For newbies who are reading this thread, I'd like to explain that scleroderma is diagnosed, and categorized, according to symptoms, and especially symptoms such as the presence of tight skin and/or pulmonary fibrosis, calcinosis, Raynaud's, certain esophageal problems, and telangiectasia. A swollen tongue is not a listed symptom of scleroderma so all by itself, it would not be an item that would commonly be associated with scleroderma and it would not be a symptom that would help diagnose systemic scleroderma.  (But, just to be comprehensive, a tongue biopsy could help differentiate between linear scleroderma and Parry Rombergs Syndrome.)

 

Technically speaking, Mixed Connective Tissue Disease means that a person has symptoms of several connective tissue diseases, such as lupus, scleroderma, and polymyositis. Therefore, I would have to assume that you have other symptoms of scleroderma (or connective tissue disease) and the presence of additional findings wouldn't really change your primary diagnosis of MCTD.

 

However, an awful lot of people confuse MCTD with UCTD, which is Undifferentiated Connective Tissue Disease.  People with UCTD are often waiting eagerly for the other shoe to drop, to figure out which connective tissue disease they might have, in which case biopsy results can often be helpful in pinning things down, and if they do, then your overall diagnosis could/would/should change, in which case this would be a potentially much bigger concern for both you and your doctors.

 

I haven't heard of a tongue biopsy being used to confirm scleroderma before, but that probably only means that I am very uneducated in this regard.  Unfortunately, the vast extent of my lack of knowledge in these areas amazes me on most days, and downright astounds me on others. So we will have to alert our amazing sclero researchers with an APB for abstracts or articles on this topic.

 

Meanwhile, the only info we have posted on our main site about scleroderma and the tongue -- so far, at least -- relates to the increased prevalence of tongue cancer in systemic sclerosis, see Tongue and Oral Cancers in Systemic Sclerosis. Yes, unhappy thought.  But I am going to assume that so far that has been ruled out for you, and I am only including the link here for others who are interested in the overall topic of tongue involvement with scleroderma, since it is not a very common topic.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

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

#4 Sweet

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Posted 20 March 2013 - 04:14 PM

Hi Knitterdi,

Welcome to these forums! Jo and Shelley gave you terrific info, I hope you find it helpful. I've never had a problem with this 'yet', so I don't have any great words of wisdom, but wanted to give you a warm welcome.
Warm and gentle hugs,

Pamela
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#5 Shelley Ensz

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Posted 21 March 2013 - 06:42 PM

Macroglossia (enlarged tongue)?! 

 

Cool, it's my new word for the day.  (Thanks, Jo!)


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 Knitterdi

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Posted 22 March 2013 - 07:09 AM

Shelley, thanks for your info. A tongue biopsy was done to rule out Amyloidosis. This is when they found the collagen entrapped in the muscle part of tongue. Having Raynaud's for years as well as motility issues has made them look at scleroderma. Seeing a Rheumatologist who is sending me to another Rheumatologist who is more familiar. After that, he suggests UCLA.



#7 Shelley Ensz

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Posted 22 March 2013 - 12:44 PM

Hi Knitter Di,

Well, I'm really glad to hear you don't have amyloidosis, especially since I have a terrible time trying to spell or pronounce it. :emoticon-dont-know:

The whole situation sounds interesting. Frankly, you're probably best trying to go straight to UCLA because they are a major scleroderma center, and it is absolutely astounding how often non-experts can't identify scleroderma, even when it is staring them in the face. This is a rare disease with rare and hard-to-find experts. See our Guide to Scleroderma Experts for more info.

You can always try that other doctor, but you will probably end up at UCLA no matter what way that appointment goes. Because if they diagnose scleroderma, you'll certainly want to be under the care of a scleroderma expert, and if they don't diagnose scleroderma, you'll more than likely want to have a second opinion. But, you do what you can and roll the dice from there.

:hug-group:
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.