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Connective Tissue Disorders ?


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Ok some I was diagnosed with orthostatic problems one year ago.

Last week I was diagnosed with gum disease.

I found out these two things can be caused by connective tissue disorder.

This week I have been diagnosed with a Mucous cyct on my finger....

so just read up on it and it says this ........

Doctors also don't understand exactly how these cysts form. One theory suggests that mucous cysts are formed when connective tissue degenerates (wears away). Collagen is a protein found in connective tissue. The leftover collagen is thought to collect in pools, and the pools form cysts. Fluid seems to move from the joint into the cyst, but not the other way

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http://www.hypermobility.org/whatishms.php

http://www.ednf.org/index.php?option=com_content&task=view&id=1347&Itemid=88888968

The above links might help as they are resource pages from the UK's Hypermobility Association and the other is from the Ehlers Danlos National Foundation.

Not that you have a diagnosis of an inherited connective tissue disorder - but the websites do talk about them so maybe this well give you more information.

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Guest tearose

This is frustrating for me because I have always been somewhat more over-flexible than the average person and yet the regular tests have never dx this.

I also suspect my total pelvic tearing and collapse had something to do with connective muscle breakdown.

We have family issues with tears in muscles and reactions to medicines on muscles so I wonder if there isn't adequate tests to capture the whole spectrum of connective tissue problems.

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http://www.hypermobility.org/whatishms.php

http://www.ednf.org/index.php?option=com_content&task=view&id=1347&Itemid=88888968

The above links might help as they are resource pages from the UK's Hypermobility Association and the other is from the Ehlers Danlos National Foundation.

Not that you have a diagnosis of an inherited connective tissue disorder - but the websites do talk about them so maybe this well give you more information.

Thanks for these links!!!! I've seen the US EDS site but not the UK one. It has some good info there too.

Issie

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Reen I am hypermobile and have scoliosis of the spine.

Another thing I read about the disease is it can be caused by hormones.

I am 42 years old and my bloods showed a year ago I was in the change.

So I wonder if hormones trigger the connective tissue to wear away in the gums ,

then why wouldnt it do the same thing to different places of the body?

So maybe get control of the hormones and everything will calm down ?

Thanks for the links Nowwhat.

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I often wonder about hormones too -- I'm 53 and my labs showed 3 years ago I was in that change too.... The connective tissue disorders like ehlers danlos syndrome are actually inherited and you have them your whole life. If you can touch your thumbs to your inner wrist, bend your pinky(s) back 90 deg. or more, have your elbows hyperextend greater than 10 deg., your knees the same and then touch your palms to the floor while bending at the waist - that's a Beighton score of 9. A score of 5 or more indicates generalized hypermobility (meaning large and small joints both). Another scoring system is the revised Brighton Criteria - this is a bit nicer because some folks get less bendy as they age - and this system accounts for other extra-articular manifestations such as varicose veins etc..to add up more points - for generalized hypermobility.

When you get the "syndrome" it's when you are having pain.....and other symptoms and issues that stem from your collagen matrix being different from the mainstream normal persons.... Often local anesthetics don't work too well - the medicine is absorbed at a very rapid rate - leaving none behind where it needs to be... such as in the gums for a dental procedure.

Sometimes a person doesn't even know they are hypermobile - they have aches and pains and lots of problems for many many years -- then a very sharp doctor just might pick up on their hypermobility and wha-la -- suddenly the diagnosis makes sense of their whole life story... like they could do party tricks with their hands and body as a kid, or do the splits and other such things -- & found them selves with unexplainable joint pain and a host of other issues that are related making them miserable - with docs telling them it's all in their head etc..

Anyway - I never realized I was hypermobile - but when I had a very slow and unusual post op course after joint replacement surgeries -- and a doctor saw so much osteoarthritis - she (a rheumatologist) asked me about it - and she found I had a Beighton score of 6 at my age. Then I've gotten so much 'sicker' I guess you could say - in the last couple of years from it -- that I do wonder if hormones are just really wreacking havoc with my whole constitution as regards this hypermobile body of mine. I'm going to see a specialist soon about this syndrome to get some more clarity. Everything bends too much everywhere...thankfully I don't dislocate like some folks... I sublux mainly and my new knee- is already needing revision - the kneecap shifted laterally.

The two books by Dr. Brad Tinkle are very good - You can get them on Amazon... The first one is blue and white and about 12 bucks, the second is blue with a flower on it - called The Joint Hypermobility Handbook - it's an amazing book - chapter by chapter it takes you through everything you wanted to know about this syndrome.... it's more in depth than the first book - but both are excellent.

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nowwhat,

Thanks for the explanation of the hypermobile and EDS. I was just told that I had it and wasn't given the scoring system or what mine is.

I too have gone through menopause - early in life complete hysterectomy. I do ocassionally use estriol compounded cream and red clover. I learned from a mayo doc that red clover will help the hot flashes and hormone balance and bone strength. I've been using it more than the estriol. I don't know if that's what has helped my bones to increase in density or the new calcium with stronium that I'm taking. I lean towards the clover because I haven't been on the calcium that long for it to make that much of a difference. But, I've gone from osteopenia to normal, a very slight decrease in density but within the normal range for my age.

I want to read that book. I think it would be good to have a better understanding of this since I do believe it plays such a part in the aches and pains that I have. Tell us what you learn when you go to the specialist.

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Have any of you hypermobile people had your copper levels tested?? If I remember correctly, low copper is connected to connective tissue problems. Yes, EDS is genetic, but what if it is only "active" because genetically you need more copper than the average nonEDS person? I am not telling anyone to start taking copper, but I wonder if their is a doctor somewhere that could test for copper levels and use in the body and see if there is a trend amongst EDS people? Then, possibly a trial of treatment, IF there was a trend to have low copper levels.

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Also, according to the literature I got from Dr. Francomano's office, there are over 200 known Hereditary Disorders of Connective Tissue - EDS is only one of them. I have an overlap of EDS and Stickler Syndrome, and am not particularly hypermobile. I suspect that many people have HDCTs underlying other health issues. Maybe people are only diagnosed when they have really obvious signs like hypermobility.

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Have any of you hypermobile people had your copper levels tested?? If I remember correctly, low copper is connected to connective tissue problems. Yes, EDS is genetic, but what if it is only "active" because genetically you need more copper than the average nonEDS person? I am not telling anyone to start taking copper, but I wonder if their is a doctor somewhere that could test for copper levels and use in the body and see if there is a trend amongst EDS people? Then, possibly a trial of treatment, IF there was a trend to have low copper levels.

I read that celiac disease should be considered in people with low copper levels...even without gi problems.... Copper deficiency myeloneuropathy can cause gait disturbances... Excess zinc ingestion can cause a low copper level as can malabsorption issues....It seems if you google this topic there's quite a bit you can learn - though I didn't yet find a link to connective tissue problems - it's probably there somewhere!

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Also, according to the literature I got from Dr. Francomano's office, there are over 200 known Hereditary Disorders of Connective Tissue - EDS is only one of them. I have an overlap of EDS and Stickler Syndrome, and am not particularly hypermobile. I suspect that many people have HDCTs underlying other health issues. Maybe people are only diagnosed when they have really obvious signs like hypermobility.

I get to meet with her in about ten days....I'm really looking forward to learning from her what I can for sure! I am just feeling overwhelmed with knowing "half" the story with my symptoms - hoping she can fill in at least a few gaps....

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