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01/06/2011 04:02 PM

Primary diagnosis of an auto-immune disease?

Chenaya
 
Posts: 69
Member

Hi to all our DD community. Just wanted some feedback please on how many of you have a primary diagnosis of an auto-immune disease? My dermatologist told me Dercum's has no familial link. Really? I told him I thought it might be linked to lipomas and lipoedema, maybe lymphedema, from what I know of my family's health patterns. Then he said another surprising thing - that Dercum's is not related to any auto-immune disease. I have Hashimoto's Thyroiditis that predates this Dercum's by ten or so years. I'm sure I've read of other DD folks on this site having auto-immune disorders/diseases ??? Then again, my memory is unreliable oftentimes, lol.

Thank you all, in advance, for your kind response to this conundrum. Nicola

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01/06/2011 04:36 PM
jlou
jlou  
Posts: 1235
Member

Hi Nicola - I had Lyme's Disease and it brought out my DD more. I know that my father has lipomas and some pain and a lot of members in my family have autoimmune diseases. My sister has diebetes type 1 and my other sister and her daughter have hashimoto's thyroid (and that is just naming a few). So, I really am on the fence about the whole thing myself. I think it is a chicken/egg thing and I know that autoimmune diseases are on the rise. But is it that we have something like Dercum's sitting dorment in our bodies and things like stress or other diseases (especially autoimmune) kick starts it, or is it an autoimmune disease in the sense that medical research views them today? Ugh - I just could go round and round on this.

I did, however, have a phone consult with Dr. Herbst who went through simple tests to see if I had a connective tissue disorder (if your tongue can touch your nose, you bruise easily or if you can lift your skin off the back of your hand may all be signs of this) but besides bruising easily (I have that lovely Irish fair and freckely skin that always bruises easily)I did not fit this mold. She told me that my DD sounded as if it was more autoimmune related because of the Lyme's and the other stresses I have had in my life.

So, not sure if that helps or makes your head more squirrely. I tend to do that a lot to people Smile

Janet


01/06/2011 04:50 PM
keeter

I'm on the fence, too. I see what looks like a family relationship in my own family and we have many people report the same. Your dermatologist may be looking at it from just one point of view. Which is real common in our various doctors. But it IS wonderful that he is using you for a training session! What a great opportunity!

As far as auto-immune, I have hypothyroidism but I had DD symptoms way before that and the increase in DD seemed to be tied to menopause for me. We just don't know enough about any of this to do more than theorize at this point.

Welcome to the group!

Diane


01/06/2011 04:53 PM
Chenaya
 
Posts: 69
Member

Hi Janet, what a lovely, quick response, thank you. Hmmm, yes, am a bit squirrely now after your peripatetic answer. But hey, I have Dercum's - I'm easy to confuse.

Lyme Disease is auto-immune?

Would you say that your dad has Dercum's Janet?

I can lift up the skin on the back of my hand, but don't bruise easily and can't touch my nose with my tongue. Does having fair skin predispose one to easy bruising, you think? I'm a tad fair and freckly.

Ooh, fatigue is setting in. Nana nap is feeling like a good idea. Cheers, Nicola


01/06/2011 05:00 PM
Chenaya
 
Posts: 69
Member

Oh Diane, cheers for your quick response also. So you too have the auto-immune version of hypo-thyroidism? Hashimoto's? I had a hysterectomy 21mths ago, at nearly 53 and the onset of Dercum's was sudden, only 3 months back, so yes, it would seem to have emerged in the menopausal stage.

I just feel like we each have an opportunity to add to the sum of knowledge of any of our doctors who are interested in this disease picture.

Hmmm, raining again. These floods are spreading to the whole of Queensland now. No laundry today! Good weather for a spot of researching this weird disease. You're all gems. Thank you. Nicola x


01/06/2011 05:00 PM
jlou
jlou  
Posts: 1235
Member

Hello back at ya!

I do believe my dad has the dreaded DD but he does not have as much pain as I do. He has foot pain (gout) and the lipomas and has had bad allergies his whole life (histamines are usually overactive in DD people).

Have a wonderful nap and hope you find all the answers you need. Keep posting. We are always checking and love to respond to anything Smile


01/06/2011 05:05 PM
Chenaya
 
Posts: 69
Member

Ai yai yai, I've had a lifetime of allergies. Never before did I hear of that link to Dercums, but basically I'm a babe in the woods as far as knowledge of Dercum's. Everything I hear is frightening me more. I am very, very sorry to hear that you have a lot of pain. We are 18 hours apart - good grief! It's 11a.m. Friday here Smile Thanks Janet.

01/06/2011 05:22 PM
jlou
jlou  
Posts: 1235
Member

I know, you are ready for a nap and I am almost ready for bed Smile

01/06/2011 05:27 PM
grandmasylvia
grandmasylvia  
Posts: 3031
Group Leader
I'm an Advocate

Hi Nicola..I also have Hashimoto's. It may have a DD tie-in as so many of us have thyroid disorders. I would love to know what your doctor's thoughts are on DD. What he does think causes DD and has he seen a lot of cases where you live and how he plans to treat you. DD doesn't respect borders...we have members from Australia, Sweden and the UK..so it is not caused by our drinking water or regional food. Glad to have your help as we try to figure out the nature of this beast.

01/06/2011 06:27 PM
Margie
Margie  
Posts: 739
Member

Hey Sylvia...don't forget Canada!! I'm part of the gang too, LOL
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