chronic muscle weakness and coldness

[ben33]

hi
i have hep c 30 yrs+ and u would think having it that long i would be well informed but alas no ,,i have been on treatments once 5 yr ago and stopped due to side effects and while a good drop in viral load probably not good enough for the past year or so treatments have come up again i am type 3 and eventually deciced to have a biospy which showed no scaring mild inflamation which i feel is good and maybe it might be easier to get through treatments this time -----but my docs feel i am in no condition to even start due to severe muscle weakness and my body going cold all the time to the point where i lose feeling  my thyroid is ok and so have a lot of other tests i dont know if any body has these type of symptoms with having chronic hep c and docs just shake their heads saying i dont know
i would like to start treatments as much as difficult it will be as the change in my health in the past year has been dramitic ----weight loss ,muscle loss looking tired all the time
how can someone feel so bad with hep c yet have good biospy i had it checked 3 times and the docs where stunned as well
just wondering if some in here had the same problems and if they overcomed them

[susan400]

I've had it since around 1983, so right at about 26 yrs for me.  I have a lot more muscle and bone pain, than weakness.  The only way I've been able to handle the daily pain is through taking Ultram and exercise.  However, the pain got ahold of me a couple of weeks ago and I had to cut way back on the exercising until it subsides.  I have done treatments and I still firmly believe that doing some sort of treatment is the only way to get rid of the Hep C, short of a miraculous healing from God.  Anyhow, at this time, I have not obtained SVR.  I am Geno 1A, used to be type 1A/1B, but through one of my treatments it changed to 1A.  I am Stage 2 Grade 3 as of last biopsy 2-1/2 yrs ago w/bridging fibrosis.  I would suggest a further work-up with your doctor, and/or a second opinion. Have you been to a major university hospital?  They usually have hepatologists available and I would recommend a consult with one of them.  Susan400

[justjess530]

I am 5 foot tall and weighed between 95 and 105 no matter what i ate.  I was on over 3000 calories a day and still didnt gain a pound and all of my blood work came back "with in normal limits" so  they just dismisssed it.    It took me getting blood work monthly for  years for something to finally some up positive.  As far as treatments for auto immune disorders, it all depends on what you have.  Most of it involves some type of steroid, anti malarial medicine.  There are lots of different types of Auto immunes disorders and many have over lapping symptoms, they are usually diagnosed after a few years of clinical observation even if your blood work dosent show it.  have you seen a Rheumy yet?  

[ben33]

yeah i have been checked for ibd -celiac etc i can relate to the cold hands and feet and temperature changes joint pain also nerve pain is there a specific autoimmune disorder that underlines this or just cover the lot
i know since i lost weight over 30 pounds which i didnt need to lose i do feel the cold more but no matter what i eat the good and  the bad i have not put a single pound back on 2 yrs later
how do treat autoimmune
thanks bless

[justjess530]

Have you been checked for auto immune disorders yet?  They seem to over look them when you have Hep C. They have over lapping symptoms.  I went through two years of blood work and fighting with specialistis to finally get diagnosed with Auto immune disorders on top of Hep C.  I had the muscle weakness, fatigue, sun sensitivity, joint pain, cold in the hands and feet (rayunards syndrome), cant maintain body temperature, just to name a few and these symptoms presented themselves post treatment for HepC.  

[HCA]

Sorry to read of your troubles-I read your old posts too.
Are you seeing gastroenterologist?
Have you had colonoscopy to check for colitis?
I am no doctor,just guessing.
Keep seeing specialist doctors until they get you properly diagnosed-good luck!