Guest guest Posted September 8, 2000 Report Share Posted September 8, 2000 Oh yeah I might even come back one day! Lee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2000 Report Share Posted December 23, 2000 Hello and Happy Holiday... We all have the fatigue at one time or another. I get whipped around 1-2pm daily....sometimes I just give in and take a nap. The pain fluctuates from unbearable to tolerable. I have a been taking Evening Primrose Oil now for about 6 or so months. I have pain but I am able to go about my daily routine without just dying off with pain. I seldom have a day that I can't move...I take 2000mg of EPO a day. It helps with pain, mobility, and strength plus my outlook is so much better than it has been in a long time. I've been diagnosed for 6 years with PA. I've had arthritis longer than six years, but I feel I was misdiagnosed before. I've had p since 1976. So I have learned to live with it and to also listen to what my body tells me. Do what you can and don't beat yourself up with the thoughts of what " I can't do " . Have a great Christmas. Donna in frozen snowy Mich. Toadessa7@... wrote: I am so glad I found this sight. I have been diagnosed with P and PA for several years, and can find so little about disease and treatment. I have graduated from 20mg MTX weekly,orally to same but by self injection. Did not think it was working until I decided to wean myself off, then found out how terrible I am without it. Also take Indocin, of little help. P is just in scalp and ears - would love some information on scalp treatment. PA is primarily in hands, feet, wrists and one hip. Have had two liver biopsies, monthly blood work to determine status. Am told I can only " type: now for 5 minutes, having much difficulty using right hand at all. Is fatigue common? I seem so tired. Nothing seems to help pain. Any ideas? I will see Dr. in January, so would like to inspire him (tough job) to take me seriously. Thanks for listening. Oh - by the way - I have a nine year old son, so really need my mobility!! Happy Holidays.-------------------------- eGroups Sponsor -------------------------~-~>With US & International rates as low as 3.9c a minute from Net2Phone Direct Plus Up to 1500 FREE minutes; you can call everyone on your list!>'>1/10924/0/_/494167/_/977590429/--------------------------------------------------------------------> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2000 Report Share Posted December 23, 2000 Hello to you too and welcome to our group. I cannot help with the P because I don't have any indication of that but I do have PA. I probably have lived with it for about 16 years but was diagnosed only 6 years ago. I take 20 mg / week MTX by injection but have only had 3 shots so I can't be sure of the results. As a group we have determined that fatigue is very common and try to treat ourselves with rest or a nap whenever we feel like it. My pain seems very minor at this point but I am just coming off about a month of severe pain and everything seems minor compared to that. Maybe??it's the MTX beginning to work but I believe it is more from the chiropractic help I have received over the last week. I'm glad you've found us. I've only been a member for a few months but have enjoyed all the discussions with others. Jeanne In Idaho Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 2000 Report Share Posted December 24, 2000 I use Nizoral shampoo for my scalp-it works great! They sell it over the counter. Rae [ ] Hello! > I am so glad I found this sight. I have been diagnosed with P and PA > for several years, and can find so little about disease and > treatment. I have graduated from 20mg MTX weekly,orally to same but > by self injection. Did not think it was working until I decided to > wean myself off, then found out how terrible I am without it. Also > take Indocin, of little help. P is just in scalp and ears - would > love some information on scalp treatment. PA is primarily in hands, > feet, wrists and one hip. Have had two liver biopsies, monthly blood > work to determine status. Am told I can only " type: now for 5 > minutes, having much difficulty using right hand at all. Is fatigue > common? I seem so tired. Nothing seems to help pain. Any ideas? I > will see Dr. in January, so would like to inspire him (tough job) to > take me seriously. Thanks for listening. Oh - by the way - I have a > nine year old son, so really need my mobility!! Happy Holidays. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2001 Report Share Posted April 17, 2001 In a message dated 4/17/01 6:40:02 PM Pacific Daylight Time, nycrtl@... writes: Hello everyone! My name is Kathy and I'm new to the Group and just wanted to introduce myself. Our son, Ronnie just turned 3 yrs old this past February. He is the joy of our life (my husband Ron, myself and - Ronnie's 1 yr old brother). Ronnie has been diagnosed with AIH just last week. The info that the hepatologist has given us has shaken us up quite a bit (to say the least!) I have been doing much reading on AIH and the drugs that are involved, etc. and I am concerned. There seems to be alot of side effects to these drugs (i.e., Prednizone and Imuran). The good news is, Ronnie seems healthy so far. The reason we did a biopsy was because I noticed last summer that his eyes were always yellow. That started the blood tests and they waited 8 months with repeat blood tests before telling me a biopsy was necessary because his blood tests still showed chronic hepatitis. They told us of the AIH based on a liver biopsy result. Said he has "moderate to severe" fibrosis and that we are looking at a transplant within 2 to 5 yrs if not sooner. Is there any other members who has a child with AIH? I appreciate all responses and support during these trying times. Thank you! Kathy (mother of Ronnie) Sorry to hear about this, Kathy. Yes, you'll find some people in the group who have children with AIH. Ask questions or just talk whenever you wish. We'll be thinking of you and your family. Best wishes to all of you. Harper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2001 Report Share Posted April 17, 2001 I'm so sorry this happened to your little boy. This group is a wonderful place to obtain information, find a shoulder to lean on, vent your anger and/or frustrations, and share good news. There are other mothers that post here regularly with children that have AIH. Don't hesitate to ask any questions, usually someone has the answer readily available or has had the same type of experience, and, if not, someone will go out and do some research to help find the answers for you. AIH (01/01) IL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2001 Report Share Posted April 17, 2001 Welcome, Kathy, I am so sorry that your little boy is having to deal with this stuff.. it is no fun for an adult, seems so unfair for a little one to have to go thru it. This group is a great place for information, support, advice, encouragement. There are other parents of kids with AIH who post here...I know they will share their experiences with you.. My prayers are with you and your little one... nne > Hello everyone! My name is Kathy and I'm new to the Group and just wanted to introduce myself. Our son, Ronnie just turned 3 yrs old this past February. He is the joy of our life (my husband Ron, myself and - Ronnie's 1 yr old brother). Ronnie has been diagnosed with AIH just last week. The info that the hepatologist has given us has shaken us up quite a bit (to say the least!) I have been doing much reading on AIH and the drugs that are involved, etc. and I am concerned. There seems to be alot of side effects to these drugs (i.e., Prednizone and Imuran). The good news is, Ronnie seems healthy so far. The reason we did a biopsy was because I noticed last summer that his eyes were always yellow. That started the blood tests and they waited 8 months with repeat blood tests before telling me a biopsy was necessary because his blood tests still showed chronic hepatitis. They told us of the AIH based on a liver biopsy result. Said he has " moderate to severe " fibrosis and that we are looking at a transplant within 2 to 5 yrs if not sooner. Is there any other members who has a child with AIH? I appreciate all responses and support during these trying times. > Thank you! > Kathy (mother of Ronnie) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2001 Report Share Posted April 17, 2001 Hi Kathy, My son was diagnosed with AIH this past January when he was 11. Thankfully we have caught it early as his liver biopsy just showed inflammation. It is hard explaining this disease to him, I can't imagine doing it with a 3 year old. Is he on medication yet? Have they been treating him all along, or are they just starting. When they diagnosed Tommy I felt as if my world fell apart. Thankfully he has been doing well. I am glad that Ronnie has been feeling well. Hopefully he will stay that way for a long time. Kids bounce back better than adults. Where do you live? Where is Ronnie being seen? If there is anything that I can do for you, please just ask me. You are welcome to call me at 919-570-9058 or e-mail me at debbiehenry@... if you need a shoulder to cry on. I am just now starting to recover from the shock of the diagnosis. A part of me is still in denial that this couldn't happen to my son. Ask around here, I was a basket case before his liver biopsy LOL. The people here are great! They will supply whatever information you need and offer lots of shoulders to vent on. Keep us informed of Ronnie's progress. We want both good and bad. Again, let me know what I can do for you. Debbie (Tommy's Mom) > [Original Message] > From: RONALD WESTFALL <nycrtl@...> > < > > Date: 4/17/01 9:38:41 PM > Subject: [ ] Hello! > > Hello everyone! My name is Kathy and I'm new to the Group and just wanted to introduce myself. Our son, Ronnie just turned 3 yrs old this past February. He is the joy of our life (my husband Ron, myself and - Ronnie's 1 yr old brother). Ronnie has been diagnosed with AIH just last week. The info that the hepatologist has given us has shaken us up quite a bit (to say the least!) I have been doing much reading on AIH and the drugs that are involved, etc. and I am concerned. There seems to be alot of side effects to these drugs (i.e., Prednizone and Imuran). The good news is, Ronnie seems healthy so far. The reason we did a biopsy was because I noticed last summer that his eyes were always yellow. That started the blood tests and they waited 8 months with repeat blood tests before telling me a biopsy was necessary because his blood tests still showed chronic hepatitis. They told us of the AIH based on a liver biopsy result. Said he has " moderate to severe " fibrosis and that we are looking at a transplant within 2 to 5 yrs if not sooner. Is there any other members who has a child with AIH? I appreciate all responses and support during these trying times. > Thank you! > Kathy (mother of Ronnie) > --- Have a fun day! --- debbiehenry@... --- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2001 Report Share Posted April 19, 2001 Thank you for your note . I am really concerned since all this is new to me and I'm my son's biggest advocate since he is only 3 and doesn't understand any of this stuff that is happening to him. The hepatologist wants to meet my husband and I this Saturday morning to discuss the " drug therapy " they want Ronnie to begin. She said the transplant team felt he is too small to undergo a successful transplant and that they are hopeful that he will be ready in one year! This is moving too quickly for me! I mean, Ronnie seems like a healthy, active little three year old! He is small for his age (27 lbs) but he's always been in the 5th percentile and I figured his fatigue was due to his red blood cell disease that he was born with (Pyruvate Kinate Deficiency, aka, hemalytic anemia). So why the big rush to give him a liver transplant? We are working with a hospital here in Cleveland, Ohio called University Rainbow Babies and Children's Hosp. The hepatologist (whom I've met/spoke with only once) told me they have been doing successful transplants for 20 yrs. We were referred to the hep dr. following the biopsy that was organized by the gastro dr. Should I feel that Ronnie is in good hands? I don't know if I should be searching for a second opinion or not. Whew....thanks for letting me vent. Guess I need to do this once in awhile now, eh? Kathy Re: [ ] Hello! > I'm so sorry this happened to your little boy. This group is a wonderful > place to obtain information, find a shoulder to lean on, vent your anger > and/or frustrations, and share good news. There are other mothers that post > here regularly with children that have AIH. Don't hesitate to ask any > questions, usually someone has the answer readily available or has had the > same type of experience, and, if not, someone will go out and do some > research to help find the answers for you. > > > AIH (01/01) > IL > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2001 Report Share Posted April 19, 2001 Hello Debbie. Thanks for the warm welcome! We live in Mentor, Ohio and Ronnie was being seen by a GI at Univerity Rainbow Babies and Children's hospital until all his labs, tests and biopsy confirmed the AIH. The GI then transferred the case to the hepatologist who works with him at Rainbow. Ronnie's biopsy showed moderate to severe damage and the hep. dr. wants to do a living donor transplant on him within the year. My husband and I will meet with her on Saturday to discuss the meds she wants him to start taking. This is all really overwhelming/confusing/scary..to say the least. I freaked about the biopsy too. Ron (my husband) and I both slept with Ronnie at the hospital following the procedure. We were a wreck - from lack of sleep and our baby being forced to lie on his right side for 8 hrs straight to prevent internal bleeding! What a nightmare....and now, to think, that wasn't the worst thing that is going to happen to him! I went through the denial stage - I think I'm still there. This can't be happening to my son...we just learned he has AIH last Thursday. I don't even remember the date. Thanks again. I'll keep in touch and let you know how he's doing. Your son, Tommy is doing fine - that's great! What kind of drugs, if any, is he taking? Was there any talk of his prognosis yet? Will he need a transplant some day or do the dr's feel the drugs should suppress the disease for now? Kathy ---- Original Message ----- From: Debbie Henry <debbiehenry@...> < > Sent: Tuesday, April 17, 2001 11:17 PM Subject: RE: [ ] Hello! > Hi Kathy, > > My son was diagnosed with AIH this past January when he was 11. Thankfully > we have caught it early as his liver biopsy just showed inflammation. It is > hard explaining this disease to him, I can't imagine doing it with a 3 year > old. Is he on medication yet? Have they been treating him all along, or are > they just starting. When they diagnosed Tommy I felt as if my world fell > apart. Thankfully he has been doing well. I am glad that Ronnie has been > feeling well. Hopefully he will stay that way for a long time. Kids bounce > back better than adults. Where do you live? Where is Ronnie being seen? If > there is anything that I can do for you, please just ask me. You are > welcome to call me at 919-570-9058 or e-mail me at > debbiehenry@... if you need a shoulder to cry on. I am just now > starting to recover from the shock of the diagnosis. A part of me is still > in denial that this couldn't happen to my son. Ask around here, I was a > basket case before his liver biopsy LOL. The people here are great! They > will supply whatever information you need and offer lots of shoulders to > vent on. Keep us informed of Ronnie's progress. We want both good and bad. > Again, let me know what I can do for you. > > Debbie (Tommy's Mom) > > > > [Original Message] > > From: RONALD WESTFALL <nycrtl@...> > > < > > > Date: 4/17/01 9:38:41 PM > > Subject: [ ] Hello! > > > > Hello everyone! My name is Kathy and I'm new to the Group and just wanted > to introduce myself. Our son, Ronnie just turned 3 yrs old this past > February. He is the joy of our life (my husband Ron, myself and - > Ronnie's 1 yr old brother). Ronnie has been diagnosed with AIH just last > week. The info that the hepatologist has given us has shaken us up quite a > bit (to say the least!) I have been doing much reading on AIH and the drugs > that are involved, etc. and I am concerned. There seems to be alot of side > effects to these drugs (i.e., Prednizone and Imuran). The good news is, > Ronnie seems healthy so far. The reason we did a biopsy was because I > noticed last summer that his eyes were always yellow. That started the > blood tests and they waited 8 months with repeat blood tests before telling > me a biopsy was necessary because his blood tests still showed chronic > hepatitis. They told us of the AIH based on a liver biopsy result. Said he > has " moderate to severe " fibrosis and that we are looking at a transplant > within 2 to 5 yrs if not sooner. Is there any other members who has a > child with AIH? I appreciate all responses and support during these trying > times. > > Thank you! > > Kathy (mother of Ronnie) > > > > > > --- Have a fun day! > --- debbiehenry@... > --- > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2001 Report Share Posted April 20, 2001 My prayers are with you. Hopefully you will feel better after talking to the doctor tomorrow. Please let us know what he says. AIH (01/01) IL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2001 Report Share Posted April 21, 2001 Kathy... My name is Luanne and I have an 18 yr old son with AIH. He also has PSC ( another liver disease..of the bile ducts) Crohns.Rhuematoid Arthritis and Vasculits...along with some spleen problems because of portal hypertension.... Ty was first diagnosed with the Crohns when he was 9...I also have another son...who is now 23 and was diagnosed with Ulcerative Colitis when he was 3.....and back in 81 it was a very rare thing to have such a young child with UC...now it seems to be more and more common....When he was diagnosed at 3 I had no one to talk to and of course then no one had really heard of UC...most people who did have it did not talk about it.....AND there were no computers with internet like now....so I was alone...Friends wanted to be of help but they just did not have a clue what it was like to have a sick child... It is so wonderful that in this day and age we can get on here and share and learn....It does help in the long run to be able to talk about things with people who know what you are going thru ...or are going thru the same thing.... From what I have read about the difference with children and adults with liver disease...they do try to tx child as soon as possible...because they have so much growing and developing to do...The liver is a very important part of our system which I am sure you already know...with some one who is older it is not as important to push the tx because they have done all their developing.... On the other support board for liver disease there was a family who had a 9 yr old with PSC...he was diagnosed after my son...his labs are not as bad as my sons...but he has already been tx'd...alnost a yr ago...My son Tyler is 18 and is now going thru the tx process...of many meetings and tests....and who knows when he will actually be tx'd. My daughter who is 26 wants to be his live donor...but his doctors are really not pushing for her to go thru all of this....She is healthy but has not started a family yet....We will have to wait and see if he gets sick enough and there is no other choice I guess she will donate...I also have strong feelings about 2 of my babies...they will always be my babies...being in such a surgery at the same time....Not sure if I could handle that....My other son who is 23 would not be able to donate being that he has UC and they frown upon my husband and myself because we are over 50....OUCH....plus I have my own health issues....so we wait and hope he stays ok....This was a rough winter for him...Was in the hosp. most of Jan. Feb and March....remember he has many issues....all auto-immune....He is a senior in HS and our hope is for him to be able to graduate....He has missed so much school and all his college plans our different....He needs to go so we will be able to keep him insured....another thing to have to worry about....so he will be going to the county college for at least a semester.... Ty does take Prednisone along with many other meds....and yes pred does have some side effects...most meds do...but it does do alot for many with many different health problems....it is a tough thing to see a child have to take meds....My kids had never even been on a anti-biodic....Ty never until he got sick at 9....le when she was about 12 for a bladder infectiona and was on some early because he was diagnosed so young....Felt I had done all the right things...and at first I thought for sure I had done something wrong.... Luckily my boys(they have had the same doctors) assured me it had nothing to do with what I did....during or after pregnancy....Isn't it always like a mom to put the blame on herself..... So now I just do what I can to make things easier for them....Well Ty only because doesn't live at home any more.... Well I have gone on way to long....Sorry for rambling..... Luanne Ty's mom write any time and I will help if I can.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2001 Report Share Posted April 24, 2001 Welcome 'None of Your Business'~ I hope you'll enjoy your stay with us and find lots of useful information and lots of support. This group is a great place for both. I have to say you are very in tune with your disease and quite articulate for a 16 year old. I'm sure it's been difficult for you living with the disease for the past couple of years. I'm sure you have bad days but you should be very proud of yourself for taking the steps to handle your disease rather than letting it handle you. Good luck with your Enbrel ... I've heard it can do wonderful things!!! Enjoy, Judy None of your business wrote: Hello, I'm new here and I just wanted to introduce myself. I'm 16 years old and I have been suffering from this diease for the past 2 years now. -- Judy O'Dell Independent Candle Consultant CandlelightDreams@... Free product and a wonderful opportunity await you. Ask me how!!!!! "Thousands of candles can be lighted from a single candle, and the life of the candle will not be shortened. Happiness never decreases by being shared." - Buddha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2001 Report Share Posted October 25, 2001 > did i find you guys?? Ollie, ollie oxen free! (whatever *that* means) LOL Sue in NJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2001 Report Share Posted October 26, 2001 Great job on the exercise and get drinking that water girl. MariAnne --- katiewtg@... wrote: > it is great to see all my buddies here!! > i talked to sherri last nite, and she was busy > trying to get puter up > and running!! i went to aerobics tonite. damn, what > a work out!! > it is very stormy here tonite. winds up to 110 km. > pouring rain, > which they say will change to snow...hmmmmm > i hope you all had a great day!!! > i am not doing well with the water....yuk > when it was hot, it was easy!! > i must get smart and just flippin' do it!!! > i enjoyed the letter from the gal that lost 150 lbs. > she has some > great ideas, and i like the way she thinks!!! > catch you all later! > > > > > > did i find you guys?? > > > > Ollie, ollie oxen free! > > > > (whatever *that* means) LOL > > > > Sue in NJ > > ===== MariAnne " Luck ain't even lucky, gotta make your own breaks " __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2001 Report Share Posted October 26, 2001 yes you did.... MariAnne --- Kate <katiewtg@...> wrote: > did i find you guys?? > > > --------------------------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2001 Report Share Posted October 26, 2001 good job on the work out WTG I hope Sherri gets her computer working again soon. The wind has been really bad here too. Don couldn't even work the last 2 days. Did I tell you all that he got a new job doing Construction instead of the dairy farm? It is so nice to know what hours he will be working and when I will get to see him Plus the pay is a lot better. Hopefully this weather will get better so that he can get a full week in next week. -- Re: hello! it is great to see all my buddies here!!i talked to sherri last nite, and she was busy trying to get puter up and running!! i went to aerobics tonite. damn, what a work out!!it is very stormy here tonite. winds up to 110 km. pouring rain, which they say will change to snow...hmmmmmi hope you all had a great day!!!i am not doing well with the water....yukwhen it was hot, it was easy!!i must get smart and just flippin' do it!!!i enjoyed the letter from the gal that lost 150 lbs. she has some great ideas, and i like the way she thinks!!!catch you all later!> > did i find you guys??> > Ollie, ollie oxen free!> > (whatever *that* means) LOL> > Sue in NJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2001 Report Share Posted October 26, 2001 Hi !!!! Glad you made it here too. Love Eleanora > did i find you guys?? > > > --------------------------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2001 Report Share Posted October 26, 2001 Hi again! I drink luke warm filtered water. I drink it warm as it is easier on my tummy than cold, and easier to get down! El > > > did i find you guys?? > > > > Ollie, ollie oxen free! > > > > (whatever *that* means) LOL > > > > Sue in NJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2001 Report Share Posted October 27, 2001 Elenora revealed: > Hi again! I drink luke warm filtered water. I drink it warm as it is You mean I'm not the only one? I drive Ed crazy because I will only drink water after it's been sitting a while, which makes our Brita filter perfect for us. He drinks everything ice cold, straight from the 'fridge. If *I* do that, not only would my teeth chatter but there better not be any body standing between me and the bathroom door! Sue in NJ Bland is beautiful Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2002 Report Share Posted January 5, 2002 Hi and welcome, Do a search in the archive for my post called " How I got Better. " That will tell you a lot of great things you can do! Best, Deb > Hi all! > > I just found this group and I'm so glad. I've semi-selfsdiagnosed > myself with candida, with the help of an herbalist and acupuncturist. > My symptoms have included depression, irritable bowel, memory fog, > mood swings, constant heartburn, tiredness, sore throat etc. I was > on birth control pills, but am off them now. I took antibiotics from > birth to age six so my system is basically screwed up. I started to > piece my health together in September but in December I was placed on > antibiotics for a throat, sinus and ear infection. I was controlling > through a low carb diet, but that slipped during Christmas. I'm > usign Oil of oregano now, but am not sure how much to use and when. > What are some low cost, easy steps I can take to get on the road back > to recovery? Almost all my symptoms have returned. > > Thanks! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2002 Report Share Posted January 28, 2002 hello welcome to the group! Start at getting to know these sites there is endless amount of Information in them. Best of health to you. http://www.nccn.net/~wwithin/vaccine.htm www.vaccinationnews.com Ms Cusano <babyangel_1973@...> wrote: Hello, I am the mother of a 4 month old baby girl. I have made the decision not to vaccinate and now I must back my decision with as much research as possible to convince my hubby. I'm so glad to be a part of this group and am thankful for any information and resources anyone can provide. Thank you! Mel __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2002 Report Share Posted March 9, 2002 Hi Marsha, Welcome to the group. My name is Lamar. I am 51 years old. I was originally disagnosed with epilepsy following my first gran mal seizure. This initial seizure took place several hours after high school football practice. I was 15 years old. For 34 years, I took prescription drugs for control of my seizures - including at times Phenobarbital, Dilantin, Tegretol and Lamictal. However, last year I became drug-free thanks to a clinic called s-Reiter. This clinic is listed in our Bookmarks section - along with a lot of other good resources which may be able to help you. I encourage you to take a serious look at those resources and send e-mail questions to the respective websites It was through e-mail to s-Reiter that I began to get the information I needed to transform my life for the better. Consequently, today not only am I drug-free but I have achieved a better overall "quality of life." I have learned the hard way that when it comes to having epilepsy, you need to look at the "big picture" - not just seizure control. Sometimes the medication prescribed for epileptics does more than just reduce seizures. You need to be aware of the adverse side-effects of your medication. Once again, welcome...post often...ask questions...and learn. Knowledge is power. Knowledge properly applied can transform a human life for the better. That's what eventually happened to me. Better late than never. Lamar marshagbill wrote: All, Good evening! My name is Marsha Billington. I am a person with Epilepsy. On wednesday I had five seizures and they left me slightly confused and inable to communicate for two days. Marsha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2002 Report Share Posted March 19, 2002 Hi Stu, the headaches and nausea are all part of the game unfortunately . I usually get sick for a couple of days after my shot , get a headache that's so bad it makes you sick to your stomach and sometimes even vomit . It just puts me down in bed, can't deal with nothing. I sure don't want to burst your bubble ,and sincerely hope you are right on what your Dr. is saying but when they use the term non responsive it usually means you are not responding to meds. When I did 1st bout with interferon they finally stopped my meds but I was on both interferon and ribavirin and they told me I was non responsive.I would just talk to your Dr. and have him clarify this for you and I hope it's really good. Please let me know ! All the best, Teri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2002 Report Share Posted March 20, 2002 Yes you`er right.I used the wrong word.I think what I ment to say was non-reactive.Any way I`am sure,my Dr. told me,it was a neg. blood test.I need to start using a Med. dictionary. Peace & Love to all!!! Stu - In Hepatitis C@y..., shhcovertoperate@a... wrote: > Hi Stu, the headaches and nausea are all part of the game unfortunately . I > usually get sick for a couple of days after my shot , get a headache that's > so bad it makes you sick to your stomach and sometimes even vomit . It just > puts me down in bed, can't deal with nothing. I sure don't want to burst your > bubble ,and sincerely hope you are right on what your Dr. is saying but when > they use the term non responsive it usually means you are not responding to > meds. When I did 1st bout with interferon they finally stopped my meds but I > was on both interferon and ribavirin and they told me I was non responsive.I > would just talk to your Dr. and have him clarify this for you and I hope it's > really good. Please let me know ! All the best, Teri Quote Link to comment Share on other sites More sharing options...
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