Aa
Aa
A
A
A
Close
Avatar universal

Medicmommy and others: ankels/legs mild swelling, but biospy OK? What to think of it?

hi medicmommy,

in case you really went ahead with treatment, i hope it went well so far, without big issues, and that it will lead to complete restoring of your health further down the road.

I have a question about an interesting comment you made one week ago in a liver biopsy thread: "the swelling in my legs started a year ago, despite my biopsy being 1/1"

Can you perhaps elaborate more on this? what do your doctors think what might cause the swelling, and how noticable is it?

Now here is my problem, i have a 'mild' swelling, too, and i would really like to understand what it might mean.

My story is a bit twisted - the details are at http://www.medhelp.org/posts/show/321830 -  but here the quick summary:

- i stronly suspect that i was infected with some form of hepatitis virus in 2002 (had elevated ALT for several months after some incidence)

- this year, have been diagnosed with palmar erythema, have somewhat signs of little bit surpressed liver function (increases serum bile acids, Protom. time on lower side) but the liver enzymes (<20), plateletes (~200), and albumin (~47) are fairly normal.

- despite all the signs for liver issues: negative for all liver diseases and all known hepatitis viruses

- liver biopsy last year did not show ANY fibrosis or other damage. Neither did ultrasounds or FibroScan (normal range result).

- I have somewhat adjusted to live in this kind of semi-healthy body, but now i have this swelling problem in my feet. it's as follows:
  * it is not visible from outside.
  * but i feel it all the time when i sit, walk, run. Especially in the morning.
  * Dr did not yet confirm it's edema.
  * But i feel how there is pressure building up inside, and it itches.  
  * when i push a fingernail into the skin, the imprint stays for a minute. But with whole finger fortunately no such effect is there yet.
  * This tells me i am, if it's really water retention, at the early stage of it. Perhaps it's 0.5 - 1.0 mm of water/swelling below the skin.


Last week i had a second liver biospsy (purely on my request), and in addition to fibrosis/cirrhosis (which i hope they will fail to detect) they will also search for HCV/HBV in the liver tissue. So, i really try to get to the bottom of this. The results will be available in 3 weeks.

But in the meantime, so i want to gather a bit of information about the swelling issue, what's your opinion on it, and what your doctor(s) said, how this kind of swelling can be caused by liver "problems" in absence of structural liver damage (cirrhosis).

Thanks a lot for anyone's input on this!
Joachim
9 Responses
Sort by: Helpful Oldest Newest
140622 tn?1190098929
Check out massage for lymph nodes. They get VERY swollen and full of toxins in certain cases.
Helpful - 0
Avatar universal
Your feedback on the leg edema thing is great! I actuallt have varying degrees of pitting edema, just limited to my lower legs and ankles.. (Pitting edema  = can make a dent that stays in the tissue after pressing a finger gently over the effected area)...I was taking lasix and potassium replacements intermittently, but I found better long term effects with drinking more water and increasing my activity level...It never goes away completely, but it hasn't caused any real problems either..All my organ functions are normal (kidneys, heart lungs, liver) at present...
Helpful - 0
Avatar universal
Sorry, i just saw your post to me. Yes, definitely get checked out. I hope it all works out. Thats great that you are going to go see HR. At least you will know that you will have an accurate reading of your bx. Let me know how you make out. If you don't see me around, you can PM me. That notification in the private email seems to be working again. Take care.


Jochaim,,,glad that all went well at the doctor visit. Make sure you print out the directions on how to do the cryo test and trust the results ONLY if proper procedure was followed. Good luck!
MO

Helpful - 0
Avatar universal
hi, thanks for your inputs

had the GP doc visit today, and nothing came out, neither good nor bad (says not to worry etc., had no real answer what it was etc.) While i dont think that this doc is particularily good in detecting subtile stuff, but at i think he surely would recognize an edema if he sees one. so, all in all i feel OK waiting for the next 3 weeks for the liver biopsy results

in the meantime i will do the C4 protein check (for cryo) on my own, and will follow up in case the result is on the lower side of the scale.

best wishes, and thanks again
Joachim

PS: foo fighter, wish you all the best for the Fibroscan results!
- and fretboard, pls keep us posted about what you do re. the swelling
Helpful - 0
Avatar universal
To:  
Helpful - 0
Avatar universal
In April of 06 (after not seeing my liver doc since 1997) I freaked when I read that swollen ankles and feet were a symptom of liver failure. I was searching because of scary swelling in feet and ankles. They were HUGE.

That and I had also seen all the bruised up face ads for new drugs so I figured I had better get in. Anyway, they looked at my feet/ankles and said it had nothing to do with my HepC. Probably something else. Six months later, they were almost normal. And you know, I never thought much about it again, since that first appointment. I figured exercise and weight loss helped and changing desk chairs (I sit for many hours at a computer). But I had no other reason for this (no high blood pressure problems, salt intake, etc.)

Anyway, the event got my head out of the sand. Almost two years later now and I will have one more test to decide whether to treat or not.

I have also suffered off and on over the years with what my dermatologist told me was cold weather hives. So weird because they only came on a certain temperature. If I would wade into a cold lake I would come out covered with hives with a line exactly at the depth of the water on my body. Depending on how long I was cold would determine how bad they were. Sometimes they would spread into one huge wheal. Taking out the snow blower would result in a face/neck that made me look like a character on a Seinfeld episode. Family used to tease me about taking a side job in a freak show.

I had read a bit about Cryo when I first came to this board and mentioned it to my doc and NP and they both blew me off. I said I get hives from cold, should we test and got an immediate, "no." I figured they knew what was best and I really had what the derm told me. The hives are better than than they used to be but unfortunately numb fingers seem to be taking their place. I am now the designated hot coffee cup carrier for everyone.

I will see HR for a fibroscan next week, and based upon his expert info will make the decision to treat or not. I am making a list of questions and now I will add this info to my health summary for him to review.

Thank you for your great info regarding testing. So lucky to learn this stuff BEFORE beginning treatment.
Helpful - 0
408795 tn?1324935675
Very good post, I swell as well, like hell.  I told my HepC Doctor and he said that it may not have anything to do with HepC.  I was diagnosed in 1992 but I was swelling as far back as the early 80's.  That could just mean I've had hepC for longer than my diagnosis, I don't know but here's what happens to me.  My hands and feet swell daily and I was prescribed Lasix actually the name is something else.  Anyways my hands get so fat they look really ugly like little hams or something.  My feet swell bad and them dogs hurt, they don't hurt everytime they swell but it's always uncomfortable.  I don't take the meds, they're called furosimide and they make me **** like a race horse.  It's good to find out information about it anyways, what next.  later
Helpful - 0
Avatar universal
hello MO

thank you a lot for your posting. It was an eye opener, indeed

I had considrered cryoglobulinemia for some time, but then dismissed it as i thought the mild swelling speaks against it. I did not know that it would be consistent with cryo. And what would support cryo in my case, would be those small (0.5 - 1.5 mm) wounds i've been having on my left shinbone since 1 or 2 months now, which don't hurt but also don't go away.  I thought i have an allergy to some newly bought jeans, but probably it's something else indeed.

so i indeed will read up a bit about cryo and how to diagnose it / rule it out.

you know, after 4 years of nearly asymptomatic guessing, and 1 year of intensive guessing due to liver symptoms, i now really need to find out what's going on.

Of course, as you can imagine, since i tested consistently negative for Hep, doctors tried to come up with some benevolent explanation of it all (starts from psycho/CFS, over genetics, to vegatitive lability and such things), but i feel somehow it's not that harmless, and all of it started after my exposure in 2002.

of course i have to be careful with my conclusions, because sometimes i had indeed been wrong too (for example i had felt swolen lymph nodes and on biopsy it turned out it was only fat tissue), but overally, everytime i felt my liver might be the reason for my ill feeling, doctor would smile, but then there would always be some suboptimal LFT result, like elevated bile acid and bilirubin.

Well tuesday i have an appointment with GP, until then i'll try to read up to suggest him what could be tested.
Helpful - 0
Avatar universal
Hi, I get that too. IMO its Cryoblobulins. Its very difficult to find a place that does the test correctly. I never found a place and I have been to the best. Its a very important test - very sensitive and should not have techs doing it if it is to be done correctly. But the lab techs are the only ones who do it. I wouldn't doubt though if someday that will change cause 50% of heppers have Cryo and that is approx the relpase rate and if someone is known to have Cryo, >IMO< they should tx longer than the amount of time given for their geno - in other words g2 - 48 weeks, g 1 - 72 weeks,,,Again- just my opinion.

Neuropathy seems to go hand and hand with Cryo - maybe not in all cases - dunno, but what I did was go to a Neurologist and in disgussing the different symptoms that I have, he said he would do several tests on me, but anyhow, he found that I have Neuropathy (which I knew, but now is confirmed) and with that, I told him, well, that is enough proof for me that I have CRyo.

He did say the Neuropathy is from the HCV and NOT the tx.

Do you get numbness/tingling in your hands,feet etc? That could be a sign of Neuropathy. That is what I get. You have to be VERY proactive with this disease - don't wait until your doctor sends you to a Neurologist IF you complain about numbness, most of them fluff it off and think your just a complainer,,but my husband and mother know me very well and when I squeak, its cause there is something wrong,,,,but with this disease, the "squeaky wheel'' doesn't always get the oil,,,,YOU have to oil your self by figuring what "other doctors" you need to see besides your Hepatoloigst. The Hepatologist IS NOT the ONLY doctor that should be involved in this disease. Most of us on forum know this, but the mistake some of us make is we talk about it, but don't always go and see the other doctors until our symptoms are so bad that the Hepatologist says "oh maybe you should go see a specialist."  Well my neuropathy that I have mentioned on a few occasions was being pushed to the side, but everytime I sit at this computer and type or sit at the piano and play, my hands go numb and it is very disturbing to me, so I took it upon myself to go to a Neuro.

Do yourself a favor and read as much as you can, and then become proactive. I had so many doctors fluff off my swelling last year before I treated. I kept insisting it was CRyo and they kept saying it was my hormones. IF I had convinced them it was cryo, I would have wanted to tx longer,,,,but INSTEAD I felt like I was just being a complainer and should lighten up and they were right and I was probably wrong and even toyed with the idea of stopping tx early cause I was RVR!

Follow your heart, don't let anyone tell you that these symptoms that you have are 'nothing' or that you just like to whine or complain. These are all extra heptatic symptoms of Hepatitus C.

If you do have Cryo, make sure you talk to your doctor about tx length and if he thinks you should tx longer. Now whether or not txing longer is what they do in cases of Cryo - I really don't know,,,but that is what I will be doing this time round - double tx time,,,but I think I need even more time than than that.

Good luck, sorry for being so wordy. I can't help it, its me and I can't change who I am as far as that.

MO
Helpful - 0
Have an Answer?

You are reading content posted in the Hepatitis C Community

Top Hepatitis Answerers
317787 tn?1473358451
DC
683231 tn?1467323017
Auburn, WA
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Answer a few simple questions about your Hep C treatment journey.

Those who qualify may receive up to $100 for their time.
Explore More In Our Hep C Learning Center
image description
Learn about this treatable virus.
image description
Getting tested for this viral infection.
image description
3 key steps to getting on treatment.
image description
4 steps to getting on therapy.
image description
What you need to know about Hep C drugs.
image description
How the drugs might affect you.
image description
These tips may up your chances of a cure.
Popular Resources
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.