posted
I finally have an explanation for all of the edema I have been experiencing for so many years. All were correct when they said it didn't seem to fit in a tick bourne illness.
I have been diagnosed with hereditary angioedema. We are still doing some more tests to confirm the type I have, although we think we know already. Parents are getting tested too, since it seems I got it from one of them.
I have the edema that is worst in my legs but actually all over. I have the stomach swelling and attacks, and occosional breathing issues. It is fairly serious and a VERY RARE disease.
I am starting thyroid treatment since mine is chronic, but it will take some time for it to build up in my body. Working on getting to the specialist for this. Also, making some decisions on other treatments.
I do not want to take androgen steroids that are often used. There are other options, although the "Golden Drug" is very expensive. I heard $2,000. a shot. Will have to see about major discounts or getting in a study if that is what I end up needing.
This disease explains all of my problems. I am not believed to still have tick bourne diseases. We will continue to re-evaluate this as my treatment for HAE continues.
If you all want more info, please go to this website
They have a good FAQ and pictures. My legs are worse than what they show.
Just wanted to give everybody an update. If you have alot of unexplained edema that is non-pitting, please look into HAE. Hopefully you won't have it, but I wish somebody had been able to tell us about this years ago. My life would likely be alot different right now. We hope and pray I will not remain so disabled and will slowly improve.
Best, Blackbirdsings
Posts: 114 | From USA | Registered: Sep 2005
| IP: Logged |
lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Good luck. My college roommate developed this and it was very frightening..Her neck and face would turn red and her tongue would swell. It happened after every time she got overheated.. I do not remember any protocols except getting out of pe. lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
| IP: Logged |
posted
I just posted this is medical too, due to suggestion.
This is both good and bad news. It is a very rare, serious and nasty disease. BUT there is treatment, it's just finding doctors that know how to treat this, are willing to deal with it, and that will work with the patient to find what works for them.
There are different types of this, and some people just go into attacks when the C1 gets low, while others have different triggers.
There are androgen steroids available for treatment. There is C1 inhibitor that can be infused. It is considered the "Golden Drug."
I hope to get to take that one. There are a few other drugs available that aren't steroids. At this point in the states, patients must be in a study to get anything other than the androgens.
C1 inhibitor can be gotten through a study OR they can import it and do it themselves for a VERY BIG fee.
Hope this helps somebody!
Yes, I do agree that the attacks are very scary and alarming. I have been in a constant attack for six years! Despite being in a constant attack I go through stages of it not being as bad, and than getting mega bad and nasty.
Posts: 114 | From USA | Registered: Sep 2005
| IP: Logged |
bettyg
Unregistered
posted
Big WELCOME BACK BLACKBIRDSINGS! I've really missed your posts. You've been thru the mill again; glad the 1 MD was able to pinpoint this FINALLY and get you some help!
$2,000 PER SHOT! I can't believe how they rip us off one way or another for our illnesses.
BBS, I'm going to copy your link here to Treepatrol's NEWBIE links; I don't think he has anything about this illness there WHEN he feels better since he's been sick like 1 month now.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[group hug]](graemlins/grouphug.gif)
![[kiss]](graemlins/kissing.gif)
Printer-friendly view of this topic