I've been experiencing swollen ankles, my left one more swollen than my right one, even if I don't stand for a long time. They're even swollen after being in bed all night. I'm athletic, fit and not overweight.
I have two questions: 1) is the edema a sign that HCV is progressing? and 2) can liver ultrasounds reveal mild fibrosis?
53, female, geno 1
VL 11 million
infected 25 years/blood transf & frequently symptomatic (fever, swollen glands, fatigue, weak, etc.)
No biopsy yet but 2005 FibroSpect blood test said slight fibrosis F0-F1
2007 liver ultrasound revealed nothing alarming
tx one week in NM283 trial and quit
BTW, speaking of blood transfusions, research indicates that as early as 1981 the blood banks and FDA called a meeting addressing the 10% of transfused patients who were contracting some sort of hepatitis. They debated implementing a donor screen which would drastically reduce the number of cases but the test would cost $2.77 and reduce the amount of product. They all agreed the test was urgently needed so eleven years and 400,000 cases of HCV later they decided to do something about it. At the time the FDA, our protector, didn't require them to implement the test to protect the public but interestingly the federal medical agency, the National Institute of Health started requiring the screen for federal blood.
A similar situation occurred in Canada and an uproar ensued. The HCV patients successfully sued the blood banks and the Canadian equivalent of the FDA and won apologies and millions of dollars.
Just wanted to give you an example of your government at work. . .
I had told several doctors I had noticed a puffiness by my ankles. I also felt like my legs felt weighty and I too like you are in shape so its not a weight issue as in 'fat'. The first doctor I showed looked at my ankles and said, "oh pleeeez that's nothing," (as if she was saying, "you should see some peoples swollen ankles.' - I think she thought I was being vain. Then I told her I am dead serious that there is something wrong,,,I know my body - and this is not normal. So then she tightly held my one leg with both hands and went all the way up to my knee and told me that yes there was swelling. Another doc told me I DIDN'T have swelling. That got me mad becasue I know that I do.
Unfortunately when you are going thru menopause most doctors think everything is in your head and yes sometimes it is, but with me, this was a no brainer - it was obvious that my ankles looked different and my legs felt weird and still do btw - not as bad, but I have my days.(and I finished tx already - I was hoping my legs/ankles were totally back to normal.)
I went to a hep doc and she said it was menopause, hormones and all that and yes it "may" be I agree. I wound up having a Cryo test and from what I learned ON FORUM (not from any MD) the Cryo test has to be done very carefully and by a tech that knows what they are doing.......Yeah, Rotsa Ruck!!
I'll cut to the chase,,,,had it done twice and it was never done correctly. I still now and then get "puffy" (hate that word -but best describes it) ankles and at times my legs feel like there is something wrong- "spongy" (try to follow me - I know the Medical terms I use can be difficult to understand.) My thumb on my right hand gets numb whenever I go where the airconditioning is too high such as the supermarket. Now, my most recent and NEW symptom/sx/whatever is my tongue is weird. The tip of it is tingly-numbish-annoying....and now today it is more than just the tip.. I went thru tx with no problem except that it may have made me nuttier than I all ready am, and now tx is over and I have this tongue thing going on.
I'm hoping it is not Cryo. I did have a brain MRI and it showed a change in the white matter which may be "reflective of small vessel disease." From what I have read it seems that Cryo can cause vasculitus which would explain the blood vessel problem in my brain IMO.
Kitty I'm telling you all of this because MAKE SURE you get a cryo test and that it is done PROPERLY. Cryo is not always gone after tx. It seems that the doctors use Prednisone or something of that sort for tx of Cryo and NO WAY am I going on that stuff. The unfortunate thing is that the percentage is pretty high as far as those who have Cryo amongst heppers and I really wonder how many on forum have had the test. Alot of times people don't have any symptoms at all.
I'm hoping my problem is just a hormone problem that will balance out eventually. I hope the same for you.
Wish you the best.
Thanks for the insight. I think you're right on about the cryo because 15 years ago I started developing severe hives whenever my skin is exposed to something cold, including the air. For example, if I carry a gallon of milk to the checkout counter my palms become red and itchy. On one occasion I was submerged in cold water during a canoe trip and I went into anaphylactic shock --huge hives broke out all over my body and my windpipe closed up leaving me gasping for breath. It was very scary because I was laying on the banks of river with nobody in sight except my boyfriend and we didn't know what was happening. I was on the verge of asphyxiation when all of a sudden my airways opened up.
Sounds like you have cold sensitivity too, with the air conditioning/thumb reaction. And I just bet your numb tongue is related. I, too, have been waking up with numb fingers even when I don't sleep on them.
I thought tx cured cryo, which stats say afflict more than 1/3 of heppers. I haven't done tx yet but am seriously considering it as I'm feverish and weak more days than not.
I have had the same issue with swollen ankles / feet for a couple years now. I take Aldactone (Spirolactone) when I remember to.
One thing I do which seems to have helped is lay in bath tub of HOT water and place feet up above the faucet against the wall (ie. out of the water). My logic being: blood will flow to the legs in an effort to cool off your body.
I then stand in the water as it drains and run some cold water on me through the shower head.
Sounds pretty nutty but it seems to have helped ( I dont take the Aldactone daily anymore)
Seems like I read an article some time ago about hot/cold treatment applications, maybe others have and could share. That or call me a whacko LOL
That had to be SCARY having your throat close up like that! I've gone swimming in cold water this year and haven't had a problem with numbness, with the exception of my one thumb and only if it gets real cold. I will be beyond ticked off if I have Cryo after all the time I spent saying I think I might have it and wasn't taken seriously by everyone. From what I have noticed, unless you have 24 hr bone pain most doctors don't think you have Cryo,,or if you don't have a rash they think you don't. For several years when the weather would change to "warm" I would get a slight rash in between my breasts. If I put moisturizer on it before I went to bed the next morning it would be gone., but whenever I didn't moisturize the rash would come back. This year I didn't get the rash when the weather got warmer. I don't know what that was all about, but it's gone now. I don't understand why it appeared only in the warm months and now disappeared, but I do think it may be hep related. I guess the interferon chased it...who knows..
My 'spongy' legs ,,it's by my shins - I can press down and instead of the skin being tight to the bone, my legs seems to have slight fluid- so slight that its not noticeable except to me,,,but a trained eye such as a doctor....SHOULD be able to notice.
I have ziltch confidence in medical people at this point. I got the best advice from the members on forum.
Take care. I hope you feel better soon and hope you have a smooth ride (and SVR) when and if you decide to tx.
ya know? it's hard when you have multiples going on, like us kittys with the menopause (which can last for years, even before and after menses has stopped, in terms of wild hormonal fluctuations, yuk!)
I think there is a danger that we go into denial about the hepatitis (few of us anyway) and attribute everything to something else, but the opposite is true too, and we can attribute everything to the hep...when the docs can't exactly parse out what is what, it's sometimes is hard for us...but I know that what youre talking about is a hormonal symptom as well as well as a symptom of some other things...maybe a good internist along with the hepatologist can see what's going on?
just take care and be well, you might think I'm nuts, but some of this is gravity with everything in our bodies always going down from the head to feet, as Rosy so wildly exhibited on "The View" one morning, she got a lot of relief from "ankles edema" etc...by putting her feet up in the air, and turning the body around, I have a slat board and I do this from time to time...they also do this in Yoga, just to get things going in a different direction sometimes, see if it works (but like the commercial says, first, ask your doctor:) be well....
Always like seeing you here, but here's hoping that you don't have cryo, I've read that it effects women much more then men, please let us know, there's a few women on Janis that have it....hope Kittyface doesn't have it either!
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