I have a disease with a funny name, do you? (885 views, 32 replies)

I have Ehlers-Danlos Syndrome (EDS) type H.M.(III) with traits of Vascular EDS....I am basically Gumbi with alot of pain and injuries. I have a genetic defect in Tenascin X, that makes all my collagen (the glue in the human body) stretchier, and more fragile. I have really awesome scars, I have dislocations and injuries,premature aging, vascualar issues. Ive learned with rare diseases, there are always weirder ones, anyone wanna share?

Hi, I find all this kinda stuff fascinating. when I was at Uni ( dental student) my favourite subject was oral med and how certain diseases manifested symptoms or signs in the oral cavity. My brother had something called Ameloblastomas over 30 of them when he was a young boy. Theses are quite rare especially at his age. In addition they are more likely to grow around the molar area but he had them throughout his mouth. when he grew up he then he married someone who had her own issues. She had hypodontia ( none of her permanent teeth at all just her baby ones) which normally comes with an underlying disease which she didnt have. so this was quite rare too considering she was a healthy person. Partial anadontia ( a few second teeth missing is common but not having any at all is not so much) this stuff all peaked my interest in dentistry and was one of the reasons i decided to study down this route.
Unfortunately thats about as weird as it gets with us.
I do not know much about Ehlers Danlos Syndrome as Have never met a patient with it. although I have heard of it.
... How does it affect your teeth or oral areas?? If you dont mind me asking? With collagen affected It must have impact orally.
I do hope this does not affect you too much in day to day life and that you are happy.
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I don't think mine is that strange of a name but does have strange symptoms for a disease. I have Grave's Disease, it came with my hyperthyroidism. It is an autoimmune disease in which the immune system attacks the body itself. I have had my thyroid killed. I had to take radiation pills that when the nurse brought to me, they were in this thick metal container and she backed of the room and told me to open the container and take the pills. Scary Huh? I then had to stay away from children and pets for 2 days bc I was radioactive. I had to flush the toilet 2x every time I used it and I had to wash my own plates and utensils. Talk about feeling like you have cooties...lol. I still have Grave's which can cause your eyes to bulge out (my great aunt had it and sneezed and one of her eyes popped out of the socket) Luckily I caught mine in time for my eyes to not bulge like that. The disease also makes you argumentative and irritable. So I guess anytime I am a b**ch I can just blame it on my Grave's Disease. ... I thank my mom for this one as she has it as well. Oh, and my hands shake badly bc of it too. I was in hair school when I was younger and I had to drop out bc people freaked out how badly my hand's would shake, of course that was before my treatment so it was a lot worse then. There are a few other symptoms thankfully that don't bother me but are horrible to have, excess sweating, loss of libido, menstrual problems (which I had prior to a hysterectomy along with Endometriosis)heart palpitations, frequent defecation, insomnia (which I do suffer from time to time), weight loss (I've always been on the small side hence the nickname Teeny) goiters, and thickening of skin
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I have empty Sella Syndrome...but mine is a little different. It's not cerebral fluid depressing my Pituitary.... my pituitary is simply gone. Doctors believe that a tumor destroyed it, then my body destroyed the tumor. All of my hormones are off. I take human growth hormone, Levothyroxine, hydrocortisone, testosterone, a high dose of vitamin D , which is a hormone. I have trouble with blood pressure, and I have bradycardia. Killer headaches. That's just for starters. There's a lot more symptoms, and medication involved. I've had this about twenty years.

Positive PL7 antisynthetase syndrome - Antisynthetase syndrome is a rare autoimmune disease characterized by interstitial lung disease and/or inflammatory myositis, with positive antisynthetase antibodies. Mine comes with the myositis.

Wow .. sh*t guys , I thought I was having it rough with a second blood clot just diagnosed. The endocrine disorders (teeny and bondojoe) i learnt quite a bit about those. Its crazy that if one of those hormones is not being produced /over produced it throws the whole system out. Its like a cascade /domino effect which I think starts at the pituitary and then downwards to all the other endocrine organs etc. well, you should know and will be the experts as you are living it, not me. ive heard of pituitary tumors etc and their effects but never of an absent one.
Ive never heard of what @Amiee has. I'm going to look it up.
I'm totally fascinated by anything to do with the body and physiology and pathology etc. Interesting stuff. Our bodies are amazing when they work that is. Ive realised as im getting older though how easy it is for them to screw up too. Wish I had looked after myself a bit more in my younger years. I feel like since ive got to my 40s its going right down bloody hill. lol.
... I hope all of you are well maintained with Meds etc and that life is good for you all.
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Yes,laylaandpz and bondojoe, that sounds terrible.I found out,hormonal problems are some of the very WORST PROBLEMS. --I have a good friend in another state,she has"Cushing's Disease."--also COPD,and diabetes.(also "lipodema"(not sure of spell.)The disease is a result of the pituitary gland is sick or damaged.She cannot control her BODY WEIGHT.

You folks with autoimmune diseases,and hormonal problems have my sympathy.Yeah,those seem to be some of the worst to treat.My friend with Cushings'has been 700 lbs.at one time.Dieting,meds,there's hardly any good treatment.

We have a lot in common,so we email & phone,talk.She's very intelligent,and talented,and really a strong person.-I really admire her.She had to diagnose it herself,and the doctors admit she's correct.

But those of you who have these type of complex medical problems,its very unfair.. It often makes me not believe in God.--(I got off somewhat easier,I get "bad headaches" and "physiological mood imbalance."My BRAIN doesn't work right.-Its a big pain in the butt.I have to take medicine for it.(I'm old,so I take small amt.of Levothyroxine, doses now too.- yes,I'm lucky I only have "brain-chemical-imbalance."
...
in Oregon,we get"Vitamin-D-deficiencies."NO SUN.I just bought a "sun-lamp"again.--for SAD.

ONE thing I know, helps bones keep from losing strength--weight-work.Weight-lifting.I used to do that--I have to go back & start again.--yes,"weight-work"helps the bone-density.It doesn't have to be MUCH WEIGHT. BUT since I got old,I stopped doing it!--so I have to start again.Nuts,I'm a "90-lb. weakling."hah hah!--My FEET got very bad arthritis, hindered walking much.-- I'm an old wreck,haha.
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I give you all a hug! That's the closet emoji I could find for a hug, but it has beer! ;)

Yes with the Synthroid for my grave's if it is off one way or the other it messes everything up, I can gain weight and be lethargic if I go into hypo and if it goes the other direction into hyper I can lose weight, have hair loss, heart palpitations. It really sucks bc my insurance doesn't cover to an Endocrinologist so I've had a regular GP watching it and they don't always know about adjusting the dose right.
I did want to say THANK YOU to everyone that shared their personal diseases, it makes me feel less alone about my own issues. So thank you