Re: help with test results

[Guest guest]

I have been told I have Rheumatoid Arthiritis also and that is from my Hep C. That is really the only thing I can help you with. I had a really hard time while on Incivek concerning my body hurting and since I really didn't move much now that I'm feeling better my body hurts (my muscles). I was informed not to message them for that could open a blood clot and get serious. I use a heating pad on my legs daily and I am starting to do more physically so I can tell the pain is going away some. I hope that helped and as I always mention....drink noncaffiene liquid (at least 64oz per day) for caffiene will hurt your body. This is my third time on the meds b ut this time with Incivek and what a difference I feel for really paying attention to liquid. I hope this little info helped

Butch. Love,Sheila To: Hepatitis_C_Central Sent: Wednesday, June 20, 2012 1:15 PM Subject: help with test results

Hey all I am sending this to all the Yahoo groups I am on so sorry if I double post. I am hoping someone has any info on an odd result I received from a Rheumatoid arthritis test I had done. First I will give you all the results then the question on the odd one.

F Rheumatoid factor Value:12 Ref range: <14IU/ml

F ANA SCREEN, IFA Value: negative Ref Range: Negative

F SED RATE BY MODIFIED WESTERGREN Value:1 Ref range:<OR=20mm/h

It's the last result the confused my doctor, He said he has never seen or heard of a value 1 on that test. If it had been a negative value he would have had a hundred different possibility's but with a positive result it means nothing. How can something never be heard of and not mean anything at same time?

He also told me my symptoms look like Lupus to him but the test say's I don't have Lupus. I have lost count on the test's I have had over the years that say the result's show one thing but because of one other test being one way or the other it cancels it out. In other words I ALMOST have Lupus and Almost have Lyme Disease and Almost have several other things but not quite. For almost 2 decades I have been trying to find out what is wrong with me and so far have a whole bunch of guesses.

Some things are proven like Hep C, Padgetts and Osteoporosis. but does not explain why my body has been slowly destroyed for going on 30 years now. Started out slow with a left knuckle then matching right then another left knuckle then matching right till every joint in hands done then it would move to feet, wrists. ankles, elbows, etc. Always left to right outer extremity's in till it got to spine but could not make the jump so it started over. It would take a year or so to make it's rounds till I did Interferon. Very first injection everything sped up to under a year to make it's rounds. Then I did interferon a second and third time to where it was doing it in 3 months and still is.

Every joint in body except spine feels like it was hit with hammer, Every long bone feels like a bad toothache does, Every tendon feels like they have shrunk and have to constantly stretch even in my sleep and every muscle feels like when you are almost at the end of a running race and all the energy leaves your muscles.

My new fun symptom for the last 2 years is my skin hurts bad especially the skin on my butt because I am forced to always be on it. What do you do when you can't stand, sit, lay, walk or bend and squat. It's like one of those horror movies where the guy wakes up and it's the same day over and over. Oh and the fatigue is ever present. The only thing I have found that helps is opioid s and I am so sick of taking then but without them I would have to seriously consider going Dr. Kevorkian and I really don't want to go there, It must be bad when that is an actual viable option. Just crazy

I have tried muscle relaxers and all of those depression meds that have a duel purpose like Gabbapenton and Savella with no luck at.

Sorry this turned out so long but hoping someone somewhere has heard of this. Oh' and it's not my Thyroid either. Any ideas at all are welcome and anyone can e-mail me offline.

Thanks a bunch for listening to me

Butch

[Guest guest]

I am just guessing that since you did rounds of Interferon that they checked

this...cryoglobulins. It is the only thing I read about that concerned

joint/muscle pain and hep c. If not then maybe that could be a place to look.

So sorry you are having to face these issues. Someone should know something but

unfortunately Dr.s will do tons of tests unless you find one that knows what's

up from the start. Keep fighting!

>

> Hey all I am sending this to all the Yahoo groups I am on so sorry if I double

post. I am hoping someone has any info on an odd result I received from a

Rheumatoid arthritis test I had done. First I will give you all the results then

the question on the odd one.

> F Rheumatoid factor Value:12 Ref range: <14IU/ml

> F ANA SCREEN, IFA Value: negative Ref Range: Negative

> F SED RATE BY MODIFIED WESTERGREN Value:1 Ref range:<OR=20mm/h

>

> It's the last result the confused my doctor, He said he has never seen or

heard of a value 1 on that test. If it had been a negative value he would have

had a hundred different possibility's but with a positive result it means

nothing. How can something never be heard of and not mean anything at same time?

> He also told me my symptoms look like Lupus to him but the test say's I don't

have Lupus. I have lost count on the test's I have had over the years that say

the result's show one thing but because of one other test being one way or the

other it cancels it out. In other words I ALMOST have Lupus and Almost have Lyme

Disease and Almost have several other things but not quite. For almost 2 decades

I have been trying to find out what is wrong with me and so far have a whole

bunch of guesses.

> Some things are proven like Hep C, Padgetts and Osteoporosis. but does not

explain why my body has been slowly destroyed for going on 30 years now. Started

out slow with a left knuckle then matching right then another left knuckle then

matching right till every joint in hands done then it would move to feet,

wrists. ankles, elbows, etc. Always left to right outer extremity's in till it

got to spine but could not make the jump so it started over. It would take a

year or so to make it's rounds till I did Interferon. Very first injection

everything sped up to under a year to make it's rounds. Then I did interferon a

second and third time to where it was doing it in 3 months and still is.

> Every joint in body except spine feels like it was hit with hammer, Every

long bone feels like a bad toothache does, Every tendon feels like they have

shrunk and have to constantly stretch even in my sleep and every muscle feels

like when you are almost at the end of a running race and all the energy leaves

your muscles.

> My new fun symptom for the last 2 years is my skin hurts bad especially the

skin on my butt because I am forced to always be on it. What do you do when you

can't stand, sit, lay, walk or bend and squat. It's like one of those horror

movies where the guy wakes up and it's the same day over and over. Oh and the

fatigue is ever present. The only thing I have found that helps is opioid s and

I am so sick of taking then but without them I would have to seriously consider

going Dr. Kevorkian and I really don't want to go there, It must be bad when

that is an actual viable option. Just crazy

> I have tried muscle relaxers and all of those depression meds that have a

duel purpose like Gabbapenton and Savella with no luck at.

> Sorry this turned out so long but hoping someone somewhere has heard of this.

Oh' and it's not my Thyroid either. Any ideas at all are welcome and anyone can

e-mail me offline.

> Thanks a bunch for listening to me

> Butch

>

[Guest guest]

I have been taking Naproxen for pain due to arthiritis in my shoulders and knees. This was caused by the treatment and something I have to deal with. But it sure knocks out the pain.

I am hoping some weight loss will help with the pain also.

Love

Janet

"There are souls in this world that have the gift of finding joy everywhere and of leaving it behind them when they go"

Frederick Faber

To: "Hepatitis_C_Central " <Hepatitis_C_Central > Sent: Thursday, June 21, 2012 7:23 PMSubject: Re: help with test results

I have been told I have Rheumatoid Arthiritis also and that is from my Hep C. That is really the only thing I can help you with. I had a really hard time while on Incivek concerning my body hurting and since I really didn't move much now that I'm feeling better my body hurts (my muscles). I was informed not to message them for that could open a blood clot and get serious. I use a heating pad on my legs daily and I am starting to do more physically so I can tell the pain is going away some. I hope that helped and as I always mention....drink noncaffiene liquid (at least 64oz per day) for caffiene will hurt your body. This is my third time on the meds b ut this time with Incivek and what a difference I feel for really paying attention to liquid. I hope this little info helped Butch.

Love,

Sheila

To: Hepatitis_C_Central Sent: Wednesday, June 20, 2012 1:15 PMSubject: help with test results

Hey all I am sending this to all the Yahoo groups I am on so sorry if I double post. I am hoping someone has any info on an odd result I received from a Rheumatoid arthritis test I had done. First I will give you all the results then the question on the odd one.F Rheumatoid factor Value:12 Ref range: <14IU/mlF ANA SCREEN, IFA Value: negative Ref Range: NegativeF SED RATE BY MODIFIED WESTERGREN Value:1 Ref range:<OR=20mm/hIt's the last result the confused my doctor, He said he has never seen or heard of a value 1 on that test. If it had been a negative value he would have had a hundred different possibility's but with a positive result it means nothing. How can something never be heard of and not mean anything at same time?He also told me my symptoms look like Lupus to him but the test say's I don't have Lupus. I have lost count on the test's I have had over the years that say the result's show one thing but because of

one other test being one way or the other it cancels it out. In other words I ALMOST have Lupus and Almost have Lyme Disease and Almost have several other things but not quite. For almost 2 decades I have been trying to find out what is wrong with me and so far have a whole bunch of guesses.Some things are proven like Hep C, Padgetts and Osteoporosis. but does not explain why my body has been slowly destroyed for going on 30 years now. Started out slow with a left knuckle then matching right then another left knuckle then matching right till every joint in hands done then it would move to feet, wrists. ankles, elbows, etc. Always left to right outer extremity's in till it got to spine but could not make the jump so it started over. It would take a year or so to make it's rounds till I did Interferon. Very first injection everything sped up to under a year to make it's rounds. Then I did interferon a second and third time to where it was doing it in

3 months and still is.Every joint in body except spine feels like it was hit with hammer, Every long bone feels like a bad toothache does, Every tendon feels like they have shrunk and have to constantly stretch even in my sleep and every muscle feels like when you are almost at the end of a running race and all the energy leaves your muscles.My new fun symptom for the last 2 years is my skin hurts bad especially the skin on my butt because I am forced to always be on it. What do you do when you can't stand, sit, lay, walk or bend and squat. It's like one of those horror movies where the guy wakes up and it's the same day over and over. Oh and the fatigue is ever present. The only thing I have found that helps is opioid s and I am so sick of taking then but without them I would have to seriously consider going Dr. Kevorkian and I really don't want to go there, It must be bad when that is an actual viable option. Just crazyI have tried muscle

relaxers and all of those depression meds that have a duel purpose like Gabbapenton and Savella with no luck at.Sorry this turned out so long but hoping someone somewhere has heard of this. Oh' and it's not my Thyroid either. Any ideas at all are welcome and anyone can e-mail me offline.Thanks a bunch for listening to me Butch

[Guest guest]

Thank you Sheila

I do drink water, Can't tolerate tea or coffee anymore. Water, Pepsi and Koolaid

are about it and I never was a big soda drinker.

I hope your pain keeps getting better for you.

Take care

Butch

I have been told I have Rheumatoid Arthiritis also and that is from my Hep C. 

That is really the only thing I can help you with.  I had a really hard time

while on Incivek concerning my body hurting and since I really didn't move much

now that I'm feeling better my body hurts (my muscles).  I was informed not to

message them for that could open a blood clot and get serious.  I use a heating

pad on my legs daily and I am starting to do more physically so I can tell the

pain is going away some.  I hope that helped and as I always mention....drink

noncaffiene liquid (at least 64oz per day) for caffiene will hurt your body. 

This is my third time on the meds b ut this time with Incivek and what a

difference I feel for really paying attention to liquid.  I hope this little

info helped Butch.

 

Love,

Sheila

[Guest guest]

You are welcome Butch Remember though, each time you drink a pepsi, that is taking hydration away from you and adding to your mysery. I do understand the caffiene thing for it is an addiction...I went to lunch the other day and had a pepsi and it was WONDERFUL, lol. But I could tell that evening I was especially itchy and dehydrated (I really feel miserable when I have evenings like that). Love,Sheila To: Hepatitis_C_Central Sent: Friday, June 22, 2012 1:29 PM Subject: Re: help with test results

Thank you Sheila

I do drink water, Can't tolerate tea or coffee anymore. Water, Pepsi and Koolaid are about it and I never was a big soda drinker.

I hope your pain keeps getting better for you.

Take care

Butch

I have been told I have Rheumatoid Arthiritis also and that is from my Hep C. That is really the only thing I can help you with. I had a really hard time while on Incivek concerning my body hurting and since I really didn't move much now that I'm feeling better my body hurts (my muscles). I was informed not to message them for that could open a blood clot and get serious. I use a heating pad on my legs daily and I am starting to do more physically so I can tell the pain is going away some. I hope that helped and as I always mention....drink noncaffiene liquid (at least 64oz per day) for caffiene will hurt your body. This is my third time on the meds b ut this time with Incivek and what a difference I feel for really paying attention to liquid. I hope this little info helped Butch.

Â

Love,

Sheila

[Guest guest]

You are welcome Butch Remember though, each time you drink a pepsi, that is taking hydration away from you and adding to your mysery. I do understand the caffiene thing for it is an addiction...I went to lunch the other day and had a pepsi and it was WONDERFUL, lol. But I could tell that evening I was especially itchy and dehydrated (I really feel miserable when I have evenings like that). Love,Sheila To: Hepatitis_C_Central Sent: Friday, June 22, 2012 1:29 PM Subject: Re: help with test results

Thank you Sheila

I do drink water, Can't tolerate tea or coffee anymore. Water, Pepsi and Koolaid are about it and I never was a big soda drinker.

I hope your pain keeps getting better for you.

Take care

Butch

I have been told I have Rheumatoid Arthiritis also and that is from my Hep C. That is really the only thing I can help you with. I had a really hard time while on Incivek concerning my body hurting and since I really didn't move much now that I'm feeling better my body hurts (my muscles). I was informed not to message them for that could open a blood clot and get serious. I use a heating pad on my legs daily and I am starting to do more physically so I can tell the pain is going away some. I hope that helped and as I always mention....drink noncaffiene liquid (at least 64oz per day) for caffiene will hurt your body. This is my third time on the meds b ut this time with Incivek and what a difference I feel for really paying attention to liquid. I hope this little info helped Butch.

Â

Love,

Sheila

[Guest guest]

I did not know about cryoglobulins but it is now on my list for next doctor

appointment. This could be some very usefull information and I thank you for

sending it.

Take care and thanks again

Butch

>

> I am just guessing that since you did rounds of Interferon that they checked

this...cryoglobulins. It is the only thing I read about that concerned

joint/muscle pain and hep c. If not then maybe that could be a place to look.

So sorry you are having to face these issues. Someone should know something but

unfortunately Dr.s will do tons of tests unless you find one that knows what's

up from the start. Keep fighting!

[Guest guest]

I have cryogobulinemia with vasculitic neuropathy due to IFN treatment back in

the 1990s. It is, needless to say, painful and quality of life issue. Sural

nerve biopsy shows the damage (mine was done in the ankle). Joint pains and

muscle pain along with unsightly blotches (least of my problem) are some of the

symptoms. I was treated with cytoxan for the vasculitic neuropathy caused by the

cryo and that has prevented any further treatment for hep c since my bone marrow

never recovered. If possible, try to have it looked at by a competent physician

who understands what it is (many never see a case--just read about them in

textbooks) and catch it sooner than later. My .2

> >

> > I am just guessing that since you did rounds of Interferon that they checked

this...cryoglobulins. It is the only thing I read about that concerned

joint/muscle pain and hep c. If not then maybe that could be a place to look.

So sorry you are having to face these issues. Someone should know something but

unfortunately Dr.s will do tons of tests unless you find one that knows what's

up from the start. Keep fighting!

>