Connective Tissue Dissorders?

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I'm going to my doctor today, hopefully he can give me a referral to a connective tissue dissorder specialist of some kind.
I've been doing research, and it seems like I almost sertainly have something along those lines. It would explain most of my health problems, and my father's as well
I won't type out the long list of my symptoms, too depressing, I 'm just posting to ask if anyone has any experience with this kind of thing. There seems to be a vague link between Autism, ADD and CTD's, but I don't really know much about it.
Wish me luck.
Thanking yous all in advance, Jo

good luck, Jo.

good luck... for what it's worth...

Do you mean CTD as in things like fibromyalgia? I am just curious because I have FMS and have been struggling with it for 6 years. Let us know what you find out.

Tallgirl

From what I have learned, immune disorders of various types tend to run in families. And supposedly there are noticeably higher incidences of autism in those families. Fibro and CTD, as well as diabetes, are immune disorders. My oldest daughter is hypoglycemic (pre-diabetic) and has either fibromyalgia or connective tissue disorder (two different doctors, two different diagnoses). We prefer to call it fibro because more people know what that means.
My daughter does NOT have autism/AS. I do have AS, and I suspect my 10yo son does as well, but my son and I do not have CTD/fibro or diabetes, though diabetes also runs in our family.

I have lupus (SLE) which I have seen described as an auto-immune disease which affects connective tissue and any organ surrounded by it. In effect this means that if you have lupus practically any organ or system can be infected, including brain, liver, kidneys and blood etc but most commonly it effects skin and joints and muscles. Luckily I have it relatively mildly; some people are severely disabled by it.
I also have diabetes (not insulin dependent; I take Metformin and am careful with my diet) and I have AS (diagnosed).
I have never heard that there is any connection between AS and these other disorders. but I would be interested to know if there i is such a connection, even if it is only suspected and not proved.
AS far as I know. nobody else in my family suffers from these conditions, although my mother suspects that my father - who died when I was a baby - might have had AS.

I have been diagnosed with AS, and I'm pretty sure my grandmother has it or something similiar. She has lupus. Myself, I've had much pain in my joints for as long as I can remember.

Thanks for all your replies, people, this is interesting stuff.
What I suspect at the moment is that I have mild Marfan Syndrome, or something similar. My doctor didn't know much about it, so I'm going back to him in a couple of days, and if he hasn't done his research by then, I'll bloody slap him.
In the meantime I've been worrying my father about every health problem he's ever had and to tell the truth, I've been too caught up in the detective work to start feeling anxious myself, but it does seem like I have a real problem.

Oh well, merry Christmas all.

I hope for your case that you don't have Marfan Syndrome and it is something that is less complicated and easier on life. I have talked to a few families online with individuals with Marfan Syndrome a few years ago and it's not something that is easy to live with.

Have you looked into Ehlers-Danlos Syndrome? I was diagnosed with the Hypermobility type six years ago and had it confirmed by a Geneticist a year later. Some of the symptoms can be similar to Marfan Syndrome so you may want to look into it.

Thanks Rogue, you're spot on. My doctor has now given me a referral to a genetics department for suspected Marfans OR Ehlers Danlos. No slapping was necessary. I have no idea what it's more likely to be, but I hope it's something relatively benign.

i have rheumatoid arthritis, so does everyone else in my family. i'm lucky, no symptoms till my mid thirties, rapid decline now. but my sister had JRA since she was 2 and has already had major reconstructive surgery on her knee.

try not to stress too much. whatever it is, it is what it is. you've probably had it forever and probably so have family members.

everyone has something, some bad deal in their hand. it's just another thing, one day at a time, enjoy the good days, rest up and do what makes you feel good on the bad ones.

personally, i had a much harded struggle with the mental stuff before i gave up struggling and decided to just take what comes and be happy i'm still here.

i don't get too hung up on diagnoses, either. naming my demons just makes them stronger in my mind.

and this may either be comforting to you or make you really mad, but personally, i feel like we're all alive to learn something, and that without barriers and problems, we would learn nothing. so i really do feel that suffering can teach us a lot - sympathy, empathy, patience, charity, just to be more like god, whatever your concept of god may be. i think these kinds of problems help us to understand other people and to be more thoughtful.

or maybe it's just a crappy deal and we just have to deal with it.

i like the god thing better tho - if you're going to suffer, there may as well be a point.

good luck to you, whatever happens.

Wow, I was reading about this stuff just the other day in the context of those "Rubber Men" who stretch their skin and do all sorts of crazy stunts...

Synchronicity... *shiver!*

I have also heard that many Autistics are known for a higher occurance rate of hypermobility (extremely flexible joints). I, for one, have this in both my elbows and at the knuckles of my thumbs, and every slightly at my knees. Everywhere else I am fairly stiff, lol.

Here is a good site I found on hypermobility and some of its related disorders (not psychiatric-- medical).

http://www.reumatologia-dr-bravo.cl/par ... RITJHS.htm

It has many pictures for illustration as well. I recommend you all look.

Hmmm....

This is funny, because I have been having serious hip joint pain. The doctor took Xrays and said the bony joints looked fine. My hips sometimes dislocate. Standing on my feet for 8 hours a day has been painful, and for whatever reason, the meds I wa sgiven hardly touch it.

The only thing that did help was to put an insole in the shoe of my shorter leg (about 1/4" shorter). Since then I don't notice teh pain much. It is there if I listen to it, but I don't....

Can't say that it makes me look forward to old age!

I have stenosing tenosynovitis, a disorder of the tendons and surrounding sheaths. It's genetic. I got it from mum. Mostly affects females.