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I have a disease with a funny name, do you? (290 views)


expert
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+3
(1 week ago)
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?


master
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+1
(1 week ago)
@WhiteTrashPanda Terrific post,thank you


member
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+3
(1 week ago)
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.


senior master
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+3
(1 week ago)
@laylaandpaz It is a good thing she didn't have what this girl had
vagastemporariabr.com/watch_movie/Teeth_2008....
lol


member
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+2
(1 week ago)
@Teeny💋☮ Ha ha .. My god yeah..lol


master
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+2
(1 week ago)
@Teeny💋☮ YIKES! smiley


senior guru
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+1
(1 week ago)
@laylaandpaz I lost a lot of adult teeth on one side(although it doesn't show)due to "infected and damaged root canals"which they could not even FIND EASILY. We thought it was my sinus.I went to a local"major bone-and-tooth surgeon," who took some bone out.it took years to get over.The BONE was infected.

Yeah, good old ROOT CANALS can go bad.Now I have a regular dentist,and it is worth the money.-Those couple of years were horrible.


senior master
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0
(1 week ago)
@clarachan1355 I've had a bad root canal, I know your pain, afterwards the dentist I went rubbed my gum above it and you could hear the bone crunch. I had to get a sizeable piece of bone removed after that root canal.


senior master
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+1
(1 week ago)
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 skinsmiley


God
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+2
(1 week ago)
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.


master
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+1
(1 week ago)
@bondojoe get ya some MegOx 400mg to go with Citracal+D3..Can find it in walmart. will help a great deal. Question about the headaches-do you have WiFi hooked up on your PC? Get rid of it. You will feel better and might be suprised about your headaches


God
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0
(1 week ago)
@1FRAC1 I take Magnesium, but I AM using a wireless headphone. I guess I could go with a wired one...but then I might die from tripping over it!


master
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+1
(1 week ago)
@bondojoe if ya ain't takin the cal you get no results,they NEED each other to work,
as for the wireless phone,,it's the wifi hook up that will hurt you most.have charter myself and 'had'wifi,,got rid of it with an adapter and now have no more vicious head aches..cell phone in moderation on stupid phone.


God
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+1
(1 week ago)
@1FRAC1 Also take calcium, 50,000 units vitamin D weekly...make my own bone broth.


senior master
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+1
(1 week ago)
@bondojoe Wow. I've never even heard of this before. No pituitary gland? That's the master gland, ie; it controls all aspects of the endocrine system. God love ya. Has your body done anything else amazing (since it destroyed the tumor you apparently had, which is huge kudos to your somehow having a very strong immune system that fought very hard... but besides that? Has your body done things that no one expected in learning to regulate itself differently? I am sorry for your headaches and any other of you aches and pains. Chronic pain really stinks, big time. I hope my question doesn't seem cavalier. I mean it with the utmost respect. smiley


God
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0
(1 week ago)
@RAVENOUSbird LOL!...I'll send you a PM later!


senior master
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+1
(1 week ago)
@bondojoe Ok, fair play.

I was funny?

I wasn't trying to be funny.

smiley smiley


God
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0
(1 week ago)
@RAVENOUSbird No...you weren't funny...but it's ok to be. I laugh a lot about all of my illnesses. They seem a bit excessive!


senior master
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+1
(1 week ago)
@bondojoe Ah, ok.

Well, I firmly believe in laughter. It's definitely gotten me through some very dark situations and days.

smiley


senior master
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0
(1 week ago)
@bondojoe I take the levothyroxine as well. It really is a difficult life when all your hormones are off balance. Since my graves disease affects than and then having to have a hysterectomy at 27 for endometriosis, my body doesn't produce estrogen, progesterone or testosterone. I have to take estrogen shots every 3 weeks just to feel somewhat normal. I couldn't keep taking the testosterone though bc it has its own set of side effects the reek havoc for a woman. I don't know what I will do one day when they decide I've been taking Hrt (Hormone Replacement Therapy) for too long. I would literally feel 3x my age if I didn't have them now.
I have literally never heard of a missing Pituitary though...that is crazy, probably makes you feel crazy as well


top expert
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+3
(1 week ago)
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. smiley


God
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+2
(1 week ago)
@Amiee Everyone gets a gift...right?


top expert
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+1
(1 week ago)
@bondojoe YES!!! It's like my birthday all year around lol.


God
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+1
(1 week ago)
@Amiee LOL! I'm glad you have a sense of humor!


senior master
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+1
(1 week ago)
@Amiee One of my childhood friends had AS, as well as Cystic Fibrosis.

I don't know you, but I feel safe saying you are a VERY brave person.


top expert
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+2
(1 week ago)
@RAVENOUSbird much love, thank you


member
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+2
(1 week ago)
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.


God
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0
(1 week ago)
@laylaandpaz What i've found that works better than anything is the right diet, good supplements, and as much exercise as you can tolerate. Stick to a schedule.


senior guru
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+2
(1 week ago)
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, smiley hindered walking much.-- smiley I'm an old wreck,haha.


master
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+1
(1 week ago)
@clarachan1355 Take the same thing I told bondo, Look it up! It's a world wide deficiency,especially in the USA. It's not in the food anymore and controls/balances everything... everything in your body needs mag and mag needs calcium to work..YOU'LL ALL FEEL BETTER smiley


God
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+1
(1 week ago)
@clarachan1355 EVERYONE has a vitamine D deficiency...they just don't know it.


expert
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+4
(1 week ago)
I give you all a hug! smiley That's the closet emoji I could find for a hug, but it has beer! smiley


senior master
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0
(1 week ago)
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 smiley smiley smiley smiley

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