Aa
Muscle Twitches
I've noticed that I have 2 - 3 muscle twitches per minute while relaxing. They aren't in just one muscle. They are all over my body, even on my face. I remember on the drug fact sheet that it says to contact the doctor if there are neurological changes, but I don't want to bother him if this is something that lots of people experience at some point during tx.
Have any of you experienced this?
Diane
Have any of you experienced this?
Diane
yes, this and other anomalies of a neurological nature do occur during tx.
I had pain and tingling in my extemities during tx, that has subsided now. It could be the INF when it destoys our insulin makes us have more insulin spikes, which always leads to neuropathy.
However, with twitches a different mechanism is at work. The most common cause is a calcium imbalance.
In my case this turned out to be my parathyroid, which regulates the calcium. It started as muscle twithches, but led finally to all night tremors and severe bone loss...it took mt a year to convince doctors (went to 8 specialists in all) before one was willing to run the right tests....
go to my thread on parathyroid in here and read it....and remember you can have this, and have normal calcium levels.
http://www.medhelp.org/posts/Hepatitis-C/HCV--treatment-side-effects-parathyroid-correctable/show/1326864?personal_page_id=976630#post_6066281
I think in most cases it may be secondary parathyroid since we are told not to go in the sun during tx, it leads to low D, and then low calcium, which leads to High PTH to correct this, hence muscle twitching.
However sometimes it is primary parathyroid ( a slow growing adenoma or tumor).
More women get this than men, especiallty at our age...especially with HCV which messes up the whole endocrine system. You can go to
parathyroid.com,
and see if the symptoms fit. I hope you'll have better luck than me in convincing docs though, it's taken me a year.....
I'm having the tumor out on monday....
then maybe my muscles will finally rest....they've been twitching every day, and every night, for hours on end. I've been on neurontin for 10 mo. (yuk) just to sleep.
funny how this all seemed minor to docs...it's not minor..
IF it's what I mentioned (it may not be), but left untreated you can get very sick.
Kidney stones...I just had several removed last month....bone loss...I lost 11% this year alone...take seriously such symptoms, even if the docs do not...
had I just stayed on the neurontin and not persisted in getting a correct diagnosis in another couple years my bones would be like glass.
good to hear from you Diane!!! How are you holding up in general??? How's your emotional life?? Anemia??
I had pain and tingling in my extemities during tx, that has subsided now. It could be the INF when it destoys our insulin makes us have more insulin spikes, which always leads to neuropathy.
However, with twitches a different mechanism is at work. The most common cause is a calcium imbalance.
In my case this turned out to be my parathyroid, which regulates the calcium. It started as muscle twithches, but led finally to all night tremors and severe bone loss...it took mt a year to convince doctors (went to 8 specialists in all) before one was willing to run the right tests....
go to my thread on parathyroid in here and read it....and remember you can have this, and have normal calcium levels.
http://www.medhelp.org/posts/Hepatitis-C/HCV--treatment-side-effects-parathyroid-correctable/show/1326864?personal_page_id=976630#post_6066281
I think in most cases it may be secondary parathyroid since we are told not to go in the sun during tx, it leads to low D, and then low calcium, which leads to High PTH to correct this, hence muscle twitching.
However sometimes it is primary parathyroid ( a slow growing adenoma or tumor).
More women get this than men, especiallty at our age...especially with HCV which messes up the whole endocrine system. You can go to
parathyroid.com,
and see if the symptoms fit. I hope you'll have better luck than me in convincing docs though, it's taken me a year.....
I'm having the tumor out on monday....
then maybe my muscles will finally rest....they've been twitching every day, and every night, for hours on end. I've been on neurontin for 10 mo. (yuk) just to sleep.
funny how this all seemed minor to docs...it's not minor..
IF it's what I mentioned (it may not be), but left untreated you can get very sick.
Kidney stones...I just had several removed last month....bone loss...I lost 11% this year alone...take seriously such symptoms, even if the docs do not...
had I just stayed on the neurontin and not persisted in getting a correct diagnosis in another couple years my bones would be like glass.
good to hear from you Diane!!! How are you holding up in general??? How's your emotional life?? Anemia??
I never had UTIs during tx, but then again I've only had 2 in my whole life. Some people tend to have them more than others. My younger sister had at least 2 a year for the longest time.
I'm now 2 months post tx and the twitching has decreased a little bit, but hasn't stopped. Unlike you, when I get the restless leg thing going on, I do have anxiety. It may be because I'm trying not to move.
A UTI thread may be a good idea. I don't remember reading much about that on here and there are a bunch of new people now who want to know as much as possible... just like we did back when...
Diane
I'm now 2 months post tx and the twitching has decreased a little bit, but hasn't stopped. Unlike you, when I get the restless leg thing going on, I do have anxiety. It may be because I'm trying not to move.
A UTI thread may be a good idea. I don't remember reading much about that on here and there are a bunch of new people now who want to know as much as possible... just like we did back when...
Diane
Diane, I've been trying to ascertain why I ended up with all these issues, which began with the simple issues you are having, muscle twitches.
I know above I told you what happened but now I think maybe I know why:
Like you I thought it might be neurological...but after treatment ended it continued, and it seemed dangerous to be on the antiseizure medicines they tried me on, so I kept looking for answers on my own until finally I found the one that fit ALL the symptoms I'd been having.
My twitching and tremors were more pronounced following each dose of riba, but I ended up with parathyroid and there's no way to be sure how this all happened but there are a couple of possible answers. Meanwhile the doc had put me on all kinds of meds to calm down the twitches. They put me on all kinds of stuff they shouldn't have...like tranqiuilizers, sleeping, anti-depressant restleg stuff etc...I kept telling them, I'm not anxiuous or depressed, but I was twitching for hours uncontolably every night...
The first thing begins with water. We go on treatment and
we are told to drink pleanty of water, and so I did. I drank at least 2-3 quarts a day...they say 2 liters but I counld't do that much.
It's important to do this because riba is known for shutting down the kidneys somewhat..read the warnings you'll see I speak the truth...it tends to make the kidneys have less output...and thats bad for them...so the extra water is to compensate and make the kidneys continue to flush.
So I would recommend folks drink all they can, we can't stop the water, taht would be the last thing to do.
Unfortunately, that much water can also deplete our levels of minerals...and since calcium is the mineral we have the most of, it's also the one we loose the most of...
hence one can end up low on calcium but not know it from the blood test.
Thats because the parathroid responds to low calcium by making more PTH hormone and taking the calcium from our bones because blood calcium level is crucial.
So you can't tell from a blood test if your calcium is getting too low, you need a 24 hr. urine to discover if you are below normal. Calcium also gets lost without enough vitamin D in the system.
PTH, if it stays high for long can make a gland go rough, and become a slow growing tumor...thats what happened to me...and then it doesn't shut off even when calcium is normalized.
To make maters worse, later on I was given vitamin D, which with a tumor you can'T do and that gave me kidney stones. I say gave because it's a known fact the D will halp form stones if PTH is too high..
It's also possible that The stones were forming towards the end of treatment, because I was so anemic after the first year I couldn't stand up even, so I quit drinking as much water cause just getting up to pee was a major effort.
In other words I had 2 possible causes of the stones forming.
I said all that to simply say in most cases what happens due to this treatment is going to be simple cases of low calcium and perhaps hyperparathyroidism, this due to lack of sunlight (we are told not to do in sun while on tx) and due to flushing too many electolytes from the body from the large amount of water we should be drinking.
In most cases normalizing calcium and vitamin D is all that is needed to return parathyroids to normal, unless the continual excess output has caused a tumorous state, and then the tumor itself will perpatuate a high PTH even if all else is remedied.
However, if these issues persist I would consult a urologist, and an endocrinologist.
In my case, I did some research, but docs did not believe this was my problem but it was...I had 22 symptoms, including theI loss of 15% of my bones and grew then I grew over a dozen kidney stones before they started believing the research and did the right tests.
Of course there's always a chance it is neurological in the true sense of the word, but I'd start by going towards getting checked over for bone loss, low D, calcium and PTH levels.
It's best at our age to have bone scans every 2 years and to use the same machine each time. The loss of estrogen makes women particularly susceptible to all these issues even without any chemo therapy, but the addition of ribavirin can really set off a host of things.
The majority of the issues surrounding ribavirin have to do with the kidneys.
Sorry to be answering you so late but I've been gone a lot, I hope you are well.
I'm thinking that folks don't know this stuff. For instance, my class told us that urinary tract infections were common, but not why. I think I know why now. Maybe I should start a thread on Urinary issues resulting from treatment. What do you think??
MB
I know above I told you what happened but now I think maybe I know why:
Like you I thought it might be neurological...but after treatment ended it continued, and it seemed dangerous to be on the antiseizure medicines they tried me on, so I kept looking for answers on my own until finally I found the one that fit ALL the symptoms I'd been having.
My twitching and tremors were more pronounced following each dose of riba, but I ended up with parathyroid and there's no way to be sure how this all happened but there are a couple of possible answers. Meanwhile the doc had put me on all kinds of meds to calm down the twitches. They put me on all kinds of stuff they shouldn't have...like tranqiuilizers, sleeping, anti-depressant restleg stuff etc...I kept telling them, I'm not anxiuous or depressed, but I was twitching for hours uncontolably every night...
The first thing begins with water. We go on treatment and
we are told to drink pleanty of water, and so I did. I drank at least 2-3 quarts a day...they say 2 liters but I counld't do that much.
It's important to do this because riba is known for shutting down the kidneys somewhat..read the warnings you'll see I speak the truth...it tends to make the kidneys have less output...and thats bad for them...so the extra water is to compensate and make the kidneys continue to flush.
So I would recommend folks drink all they can, we can't stop the water, taht would be the last thing to do.
Unfortunately, that much water can also deplete our levels of minerals...and since calcium is the mineral we have the most of, it's also the one we loose the most of...
hence one can end up low on calcium but not know it from the blood test.
Thats because the parathroid responds to low calcium by making more PTH hormone and taking the calcium from our bones because blood calcium level is crucial.
So you can't tell from a blood test if your calcium is getting too low, you need a 24 hr. urine to discover if you are below normal. Calcium also gets lost without enough vitamin D in the system.
PTH, if it stays high for long can make a gland go rough, and become a slow growing tumor...thats what happened to me...and then it doesn't shut off even when calcium is normalized.
To make maters worse, later on I was given vitamin D, which with a tumor you can'T do and that gave me kidney stones. I say gave because it's a known fact the D will halp form stones if PTH is too high..
It's also possible that The stones were forming towards the end of treatment, because I was so anemic after the first year I couldn't stand up even, so I quit drinking as much water cause just getting up to pee was a major effort.
In other words I had 2 possible causes of the stones forming.
I said all that to simply say in most cases what happens due to this treatment is going to be simple cases of low calcium and perhaps hyperparathyroidism, this due to lack of sunlight (we are told not to do in sun while on tx) and due to flushing too many electolytes from the body from the large amount of water we should be drinking.
In most cases normalizing calcium and vitamin D is all that is needed to return parathyroids to normal, unless the continual excess output has caused a tumorous state, and then the tumor itself will perpatuate a high PTH even if all else is remedied.
However, if these issues persist I would consult a urologist, and an endocrinologist.
In my case, I did some research, but docs did not believe this was my problem but it was...I had 22 symptoms, including theI loss of 15% of my bones and grew then I grew over a dozen kidney stones before they started believing the research and did the right tests.
Of course there's always a chance it is neurological in the true sense of the word, but I'd start by going towards getting checked over for bone loss, low D, calcium and PTH levels.
It's best at our age to have bone scans every 2 years and to use the same machine each time. The loss of estrogen makes women particularly susceptible to all these issues even without any chemo therapy, but the addition of ribavirin can really set off a host of things.
The majority of the issues surrounding ribavirin have to do with the kidneys.
Sorry to be answering you so late but I've been gone a lot, I hope you are well.
I'm thinking that folks don't know this stuff. For instance, my class told us that urinary tract infections were common, but not why. I think I know why now. Maybe I should start a thread on Urinary issues resulting from treatment. What do you think??
MB
you are welcome.
it's amazing how many things can be effected by this disease and it's treatment.
the black box warning states that tyroid issues can be caused by the INF, but it doesn't mention parathyroid. Of course they don't tell you just how serious this can really get but just my luck to find out I guess.
During treatment I developed a tumor in my pituitary, nodes in my thyroid, and tumor in one parathyroid, and am still having issues with high PTH even after surgery.
Your profile mentions back and muscle pain, these are very common when the calcium is off.
Even if you have a normal blood calcium you need a 24 hr urine and other tests to determine for sure if the pain has an organic cause. The blood calcium test is not a good indicator. Start with a PTH test if your symptoms line up with parathyroid.
I'm still dealing with the aftermath 2 years after tx...and having more kidney stones removed soon. Sheesh. Hopefully I don't have another tumor but they aren't sure just yet.
it's amazing how many things can be effected by this disease and it's treatment.
the black box warning states that tyroid issues can be caused by the INF, but it doesn't mention parathyroid. Of course they don't tell you just how serious this can really get but just my luck to find out I guess.
During treatment I developed a tumor in my pituitary, nodes in my thyroid, and tumor in one parathyroid, and am still having issues with high PTH even after surgery.
Your profile mentions back and muscle pain, these are very common when the calcium is off.
Even if you have a normal blood calcium you need a 24 hr urine and other tests to determine for sure if the pain has an organic cause. The blood calcium test is not a good indicator. Start with a PTH test if your symptoms line up with parathyroid.
I'm still dealing with the aftermath 2 years after tx...and having more kidney stones removed soon. Sheesh. Hopefully I don't have another tumor but they aren't sure just yet.
Thanks! I've had the 'resting twitches' for over a year & Googled my way here. Very informative. Thanks, again, for taking the time to provide it.
Hi-
I have had twitching all through treatment on and off. I never really worried about it too much and just assumed it was one of the many sides. I never mentioned it to the doctor, but as mike said there only seems to be an upside to speaking with your doc. My guess is he won't be very concerned.
congrats on only 19 injections remaining.
Take Care,
Dave
I have had twitching all through treatment on and off. I never really worried about it too much and just assumed it was one of the many sides. I never mentioned it to the doctor, but as mike said there only seems to be an upside to speaking with your doc. My guess is he won't be very concerned.
congrats on only 19 injections remaining.
Take Care,
Dave
You're such a NUT!!!!
I'm really good a visualizing and I think you are right, we would really encourage lots of people to get screened for HCV.
Thanks for the good laugh!!!
19 shots to go...................
Diane
I'm really good a visualizing and I think you are right, we would really encourage lots of people to get screened for HCV.
Thanks for the good laugh!!!
19 shots to go...................
Diane
Only I can't dance. I dance like some crazy stripper on speed I dont think anybody wants to see that believe me......spastic people like me know our limits and my feet could never handle it.
Twitching, jerking about, tripping yes I am beginning to feel a bit Forrestlike over here.
Twitching, jerking about, tripping yes I am beginning to feel a bit Forrestlike over here.
I just had the craziest picture of me and Diane standing together - right eye twitch, left eye twitch, right eye twitch, left eye twitch "oh hi we are a part of a hepatitis C support group" OH Lord can you just imagine how many people would get tested right away after seeing that?
;;;;;) (twitch)
;;;;;) (twitch)
i think it is not serious enough to call doc in the middle of the night but worth letting him know during regular hours. in other words probably no biggie but worth jingle. hang in, b
Gee.... I thought sure everybody would come back and say... "or sure, I did that all the time, everybody does."
Deb, I had the eye thing a while back, only it was my right eye. That can get down right distracting.
Diane
Deb, I had the eye thing a while back, only it was my right eye. That can get down right distracting.
Diane
I think you should definitely talk to your doctor. I'm not suggesting, nor do I believe, that it's serious but with stuff like that I see no downside to talking with your physician - but I do see a possible upside.
Mike
Mike
Yes, I had twitches, just blew if off but you are on a variety of other mediations and I wasn't and you have had more side effects than I did so you may want to mention it to your doctor.
With that left eye twitching you must be a real hit in the local bar at happy hour. I'm not sure which would be better; a good looking woman winking at me or a good looking woman with an eye patch. Thanks for the image, Deb.
It sounds to me like dehydration (even though you drink a lot of water) I know I get muscle twitches and cramps when I am dehydrated. God knows the meds do that. I dont think it's really a neurological change but I'm no doctor - especially since it's just when you are relaxing. I would think if it was something really neurological it would happen more frequently?
Now on the other hand since I"ve been so stressed this month my left eye wont stop twitching, constantly, so I know just how annoying it can really be. I am getting ready for an eye patch at this point to bad Halloween is over :(
Now on the other hand since I"ve been so stressed this month my left eye wont stop twitching, constantly, so I know just how annoying it can really be. I am getting ready for an eye patch at this point to bad Halloween is over :(
Have an Answer?
You are reading content posted in the Hepatitis C Community
Learn about this treatable virus.
Getting tested for this viral infection.
3 key steps to getting on treatment.
4 steps to getting on therapy.
What you need to know about Hep C drugs.
How the drugs might affect you.
These tips may up your chances of a cure.
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.
