Guest guest Posted October 7, 2005 Report Share Posted October 7, 2005 Hello, I wanted to ask you if it is important to chose a top specialist in hcv or if a gastro could be OK. I can take an appointment with a top specialist but I need to wait 6 weeks longer to get an appointment. I have not had a biopsy yet and I don't want to wait too long until I start treatment. Another question : Is the treatment dose or length different if the stage is more advanced or if there is already cirrhosis or is it standard for all patients of a same genotype ? I have no idea if I have had hepatitis C for 2 years, 10 years, 20 or even 30. According to some symptoms, I could already have cirrhosis, but on the other hand, I have genotype II. Suzanne Re: Rheumatologist Appt Hi Judi, Glad you went to the rheumy. I think it's 's syndrome that is caused by cold and/or make fingers and feet really cold. I was never officially dx'd with cryo...as people have said, docs just don't know. (His first guess was a sun allergy. I LMAO, as I avoid the sun, and how in the heck are my feet going to be affected when I work inside all day, and would come home and collapse? haha) Mine started with a rash on my feet and I could barely walk...my feet hurt somethin' fierce. I even borrowed crutches, but basically crawled, and couldn't work. I want to say the pain lasted about 2 weeks. However, after that, I had rashes at different times, leaving little brown spots on my skin, mainly my legs. The spots when away with treatment. I still get itchy rashes, but presently don't have insurance. I pray your pain is only temporary. Pred is a wicked drug. We tried it for the feet, and it didn't work. Plus, I think it messes with the immune system, which ppl with hcv don't need. As an aside, my whole complextion changed after treatment. Even though I don't do sun, I kinda looked like I had a tan and had faux red hair. After treatment, the make up I used looked like face paint, as I went to a whiter shade of pale after treatment. And red hair? Ha! No way. Had to go more blonde. Like Jax, after tx, I got my hair cut to about 3/4 in long, and it was all salt and pepper. My natural hair is very dark, and I miss it, but roots are too hard to keep up. I let it go au naturel for awhile, until one day at the grocery store. I was wondering how you cook beets, and I thought to myself, " hmmm, I'll just look for someone with grey hair...they should know " ...then I realised that would be me! LOL. So, until I learn how to cook beets, I guess I'll be coloring my hair. Keep us posted, Judi. Take care, Jane > Just wanted to let you guys know that the rheumatologist thinks my > joint pain and rash are Hep C related and he thinks it's one of two > things: > > lin Meltzer syndrom AKA Cryoglobulinemia (jane you were right > maybe!!) He said it doesn't always have to be when the joints get > cold). > > Dermatomyositis. > > I've looked up both and they're both treated the same way - w/ pred > and NSAID's, and I am NOT taking prednisone EVER AGAIN. > > I am still hoping this pain is temporary but really glad to find a DR > who is going to give me a definite dx. > > Judi --- CoreComm Webmail http://www.core.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2005 Report Share Posted October 7, 2005 I'd wait for a top specialist. The disease has waited this long for tx. It can wait a few more weeks. You want to make sure you have a good DR taking the best care of you possible. Judi > > Hello, > > I wanted to ask you if it is important to chose a top specialist in hcv or if a gastro could be OK. I can take an appointment with a top specialist but I need to wait 6 weeks longer to get an appointment. I have not had a biopsy yet and I don't want to wait too long until I start treatment. > > Another question : Is the treatment dose or length different if the stage is more advanced or if there is already cirrhosis or is it standard for all patients of a same genotype ? I have no idea if I have had hepatitis C for 2 years, 10 years, 20 or even 30. According to some symptoms, I could already have cirrhosis, but on the other hand, I have genotype II. > > Suzanne > Re: Rheumatologist Appt > > > Hi Judi, > > Glad you went to the rheumy. I think it's 's syndrome that is caused by cold and/or make fingers and feet really cold. > > I was never officially dx'd with cryo...as people have said, docs just don't know. (His first guess was a sun allergy. I LMAO, as I avoid the sun, and how in the heck are my feet going to be affected when I work inside all day, and would come home and collapse? haha) Mine started with a rash on my feet and I could barely walk...my feet hurt somethin' fierce. I even borrowed crutches, but basically crawled, and couldn't work. I want to say the pain lasted about 2 weeks. However, after that, I had rashes at different times, leaving little brown spots on my skin, mainly my legs. The spots when away with treatment. > > I still get itchy rashes, but presently don't have insurance. > > I pray your pain is only temporary. Pred is a wicked drug. We tried it for the feet, and it didn't work. Plus, I think it messes with the immune system, which ppl with hcv don't need. > > As an aside, my whole complextion changed after treatment. Even though I don't do sun, I kinda looked like I had a tan and had faux red hair. After treatment, the make up I used looked like face paint, as I went to a whiter shade of pale after treatment. And red hair? Ha! No way. Had to go more blonde. Like Jax, after tx, I got my hair cut to about 3/4 in long, and it was all salt and pepper. My natural hair is very dark, and I miss it, but roots are too hard to keep up. I let it go au naturel for awhile, until one day at the grocery store. I was wondering how you cook beets, and I thought to myself, " hmmm, I'll just look for someone with grey hair...they should know " ...then I realised that would be me! LOL. So, until I learn how to cook beets, I guess I'll be coloring my hair. > > Keep us posted, Judi. > > Take care, > Jane > > > Just wanted to let you guys know that the rheumatologist thinks my > > joint pain and rash are Hep C related and he thinks it's one of two > > things: > > > > lin Meltzer syndrom AKA Cryoglobulinemia (jane you were right > > maybe!!) He said it doesn't always have to be when the joints get > > cold). > > > > Dermatomyositis. > > > > I've looked up both and they're both treated the same way - w/ pred > > and NSAID's, and I am NOT taking prednisone EVER AGAIN. > > > > I am still hoping this pain is temporary but really glad to find a DR > > who is going to give me a definite dx. > > > > Judi > > --- > CoreComm Webmail > http://www.core.com > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2007 Report Share Posted November 22, 2007 Hi. I've posted on here before about my father's lifelong achalasia (70+ years). He's quite doctorphobic and often changes his mind about seeing a doctor, so it's been quite a struggle. I'm still working on him. He's expressed interest in seeing Dr. Rice after hearing some good things about the Cleveland Clinic. We live near SF. Would Dr. Patti be a better option? My father's unsure what would happen were he to make an appointment (would they admit him for a surgery there right away if he flew to Cleveland for a consult or would he have to fly back another time, etc.). He's also unsure if anything can be done fo him since he has had this disorder for so long and is older. He's lost even more weight now and is under 90 lbs. Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2007 Report Share Posted November 22, 2007 lasunnygirlday wrote: > ... Would Dr. Patti be a better option? ... I would think he would be a good option from what I hear. > ... would they admit him > for a surgery there right away if he flew to Cleveland ... Often they will set you up for tests on one day and plan a surgery for a fallowing day in case one is needed. This is true for other centers too, not just CC. You should be able to call their office, or that of another center, and ask them these kind of things. I am sure they would be glad to explain the options they provide. You may also want ask if his age will be a factor in the treatment offered. At his age, and if he has any other health problems, they may suggest dilatation or botox before surgery, and may also require extra tests, like a heart stress test to see if he is healthy enough to have surgery. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2007 Report Share Posted November 22, 2007 > > Hi. I've posted on here before about my father's lifelong achalasia (70+ years). He's quite > doctorphobic and often changes his mind about seeing a doctor, so it's been quite a struggle. > I'm still working on him. He's expressed interest in seeing Dr. Rice after hearing some good > things about the Cleveland Clinic. We live near SF. Would Dr. Patti be a better option? My > father's unsure what would happen were he to make an appointment (would they admit him > for a surgery there right away if he flew to Cleveland for a consult or would he have to fly > back another time, etc.). He's also unsure if anything can be done fo him since he has had > this disorder for so long and is older. He's lost even more weight now and is under 90 lbs. > Thanks! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2007 Report Share Posted November 22, 2007 Hi- I used Dr Rice at the Cleveland Clinic for my son and he is very experienced in Achalasia.But I have also heard that DR Patti is as well.I cant give you the amount of myotomies he has done versus Dr Rice(over 300) but the name comes up here and he has been used by several people on here.Hopefully someone willpost that knows but yes he is a experienced A Dr. If and when you call CC , tell them you are out of town and they will schedule your testing to help accomadate that.You may have to go back for surgery but as far as consult and the test he will get it all done in about 2-3 days.If you have any questions please just let me know.Good luck to you and your father. Tonia in VA > > Hi. I've posted on here before about my father's lifelong achalasia (70+ years). He's quite > doctorphobic and often changes his mind about seeing a doctor, so it's been quite a struggle. > I'm still working on him. He's expressed interest in seeing Dr. Rice after hearing some good > things about the Cleveland Clinic. We live near SF. Would Dr. Patti be a better option? My > father's unsure what would happen were he to make an appointment (would they admit him > for a surgery there right away if he flew to Cleveland for a consult or would he have to fly > back another time, etc.). He's also unsure if anything can be done fo him since he has had > this disorder for so long and is older. He's lost even more weight now and is under 90 lbs. > Thanks! > Quote Link to comment Share on other sites More sharing options...
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