Guest guest Posted May 27, 2002 Report Share Posted May 27, 2002 Debbie, my doctor told me " you have a liver disease " but " you are not ill " (i was on prednisone at the time)....i've been off for two months. i try not to think about if and when i will have a " relapse " ...i can't help it, i hate what prednisone did to me-it's soooo hard! kathy > > Hi everyone > > > > I hope you are all okay today. I have a few little > > questions to throw your way and would be grateful for > > any answers. My bloodwork has been fine for a little > > while but I still get tired a lot - is this normal to > > feel the tiredness even when liver levels are not > > elevated. Also could anybody tell me what the liver > > cleansing diet is. Last question is I have a friends > > wedding to attend soon and to be honest I havent drank > > no alcohol at all since being diagnosed with AIH > > simply because I wouldnt like to add insult to injury, > > but as you know at weddings there is always a toast > > and wonder if we are allowed to have a drink or not -- > > I just dont want to be awkward and ask for a non > > alcoholic beverage but dont know if this will be > > harmful. > > > > Have a happy day all of you. > > > > Gill > > AIH 99 > > UK > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2002 Report Share Posted June 4, 2002 Dee-Tea Tree oil is used topically for yeast infections of the skin/hair/nails and can be used in diluted form for colonics - I;ve read about using a tampon with tea tree oil (diluted) and inserting it to help w/vaginal yeast issues. Good luck - I had you same problem and now the yeast is attacking my scalp and skin and tongue instead of vaginally. This yeast is really a bear! Ms. Lib Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2002 Report Share Posted June 10, 2002 Hiya Mom and I suggest you get " Prescriptions for Nutritional Healing " by Balch, MD. He has an extensive protocol for Epilepsy, some of which we use with my son, Charlie, who is on both Depakote and Lamictal and still not totally seizure free. It is a good idea to find a doctor who will support you on this journey and try to find the underlying cause of 's seizures. Charlie is out of it for at least two days after a gran mal seizure. mjh In a message dated 6/10/02 8:47:45 AM Eastern Daylight Time, myplace@... writes: > Hello- > I am new to this group and searching for other peoples experiences. > My daughter is 14 years old. > When she was 12 she had her first seizure- > I did not observe the actual seizing part, I found her unconscious on the > kitchen floor and it took her 45 minutes to be able to talk or even > recognise me. > We went to a neurologist, she was on Depakote 250 three times a day for 18 > mos. She had no other seizures. > She had been off all medications with no seizures for a year- > untill friday. She had a HUGE seizure(well, huge to me!) > on friday after noon. I saw this one. It scared me. She convulsed, legs, > arms and head for 2 minutes, she was still and silent(I was afraid she was > dead) for another 60 seconds, and it took her 40 minutes before she could > talk again. > We know the depakote makes her feel like crap. > She gained 40 pounds in the first year of being on it. > We would like to try and start with diet, vitamins, or other methods of > managing this but I just dont know where to start. > I have been searching on the web and seem to find some references to Vitamin > B complexes and magnesium. > > Anybody got any suggestions? > Thank you so much. > Lori > Mom to ! > > Living and loving life. Happy, Joyous and free. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2002 Report Share Posted June 10, 2002 Dear Lori, Start with the book Prescription for Nutritional Healing by Balch. It has the basics in it,pages 352 to 355. The book says " In older children, epilepsy is more likely to result from genetic factors, infections of the certral nervous system, or head injury. " Does any of that ring a bell with you? Gail Pike " Lori Ransom " <myplace@...> wrote: >Hello- >I am new to this group and searching for other peoples experiences. >My daughter is 14 years old. >When she was 12 she had her first seizure- >I did not observe the actual seizing part, I found her unconscious on the >kitchen floor and it took her 45 minutes to be able to talk or even >recognise me. >We went to a neurologist, she was on Depakote 250 three times a day for 18 >mos. She had no other seizures. >She had been off all medications with no seizures for a year- >untill friday. She had a HUGE seizure(well, huge to me!) >on friday after noon. I saw this one. It scared me. She convulsed, legs, >arms and head for 2 minutes, she was still and silent(I was afraid she was >dead) for another 60 seconds, and it took her 40 minutes before she could >talk again. >We know the depakote makes her feel like crap. >She gained 40 pounds in the first year of being on it. >We would like to try and start with diet, vitamins, or other methods of >managing this but I just dont know where to start. >I have been searching on the web and seem to find some references to Vitamin >B complexes and magnesium. > >Anybody got any suggestions? >Thank you so much. >Lori >Mom to ! > >Living and loving life. Happy, Joyous and free. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2002 Report Share Posted June 10, 2002 Lori, Did the doctor ever determine for you why your daughter has an epileptic disorder? Has the doctor determined what it is that triggers the seizures? If not, I highly suggest you seek a second opinion with regard to your daughter's care. You need to identify the source of the problem and take steps to resolve it. Too often, in my opinion, the consequences of the problem (seizures) are addressed rather than what causes them. Consequently, the REAL problem is not addressed - simply masked with drugs. Sometimes the drugs used to prevent seizures from occurring bring with them adverse side effects which can in themselves be very damaging. It really helps to look at the " big picture " with regard to one's health and know your options for making things better. If you haven't toured our Bookmarks section, I encourage you to do so. You may find a lot of useful help there. One website, s-Reiter , treats nothing but epilepsy and does ongoing research into the disorder. Check out the latest research. You can even submit personal questions. The head of therapy research responds to all questions. But, that is not all. If you so desire, the clinic will review your child's medical records and give you an evaluation at no charge. There is a lot you can learn online from our Bookmark section. Please do not hesitate to use it. Lamar Lori Ransom wrote: > Hello- > I am new to this group and searching for other peoples experiences. > My daughter is 14 years old. > When she was 12 she had her first seizure- > I did not observe the actual seizing part, I found her unconscious on > the > kitchen floor and it took her 45 minutes to be able to talk or even > recognise me. > We went to a neurologist, she was on Depakote 250 three times a day > for 18 > mos. She had no other seizures. > She had been off all medications with no seizures for a year- > untill friday. She had a HUGE seizure(well, huge to me!) > on friday after noon. I saw this one. It scared me. She convulsed, > legs, > arms and head for 2 minutes, she was still and silent(I was afraid she > was > dead) for another 60 seconds, and it took her 40 minutes before she > could > talk again. > We know the depakote makes her feel like crap. > She gained 40 pounds in the first year of being on it. > We would like to try and start with diet, vitamins, or other methods > of > managing this but I just dont know where to start. > I have been searching on the web and seem to find some references to > Vitamin > B complexes and magnesium. > > Anybody got any suggestions? > Thank you so much. > Lori > Mom to ! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2002 Report Share Posted June 10, 2002 HI Lamar, Thank you for your response. ****Did the doctor ever determine for you why your daughter has an epileptic disorder? Believe it or not- the first neurologist we saw said it was perfectly normal for a girl her age to have a seizure-he had seen it happen many times. He said we should be glad that it took 12 years for the first seizure and then it may be 12 years before we see another one.He found nothing abnormal on her EEG. We found that unaccepable and sought out a second opinion. What an ordeal it was to find a doctor willing to do a second opinion. FINALLY, we found one in Childrens hospital in Buffalo, and she found seizural activity on the EEG and prescribed the depakote. We went back to see her every three months for EEG and script refill. She offered no explanation as to why the seizure happened. After 18 mos. we decided to wean her off the depakote and see what happened. One year off all medications seizure free. ***Has the doctor determined what it is that triggers the seizures? NO- The doctors offered no opinion. WE know that the night before her first seizure and the nite before the second one-two years later, she had less that normal sleep. Much less. ****Too often, in my opinion, the consequences of the problem (seizures) are addressed rather than what causes them. Consequently, the REAL problem is not addressed - simply masked with drugs. EXACTLY!!! I agree 100%!! Her dad and I do not want her to be drugged up again. We think that because we had a year seizure free, and the sleep being deprived, we DONT want to get back into that drugs cycle. Of course- If she is having seizures regularily, we would consider again medication, but at this point we are not convinced meds are the right choice. ***If you haven't toured our Bookmarks section, I encourage you to do so. I am doing that right now. Thank you for all the suggestions. Take care. Lori Lamar Lori Ransom wrote: > Hello- > I am new to this group and searching for other peoples experiences. > My daughter is 14 years old. > When she was 12 she had her first seizure- > I did not observe the actual seizing part, I found her unconscious on > the > kitchen floor and it took her 45 minutes to be able to talk or even > recognise me. > We went to a neurologist, she was on Depakote 250 three times a day > for 18 > mos. She had no other seizures. > She had been off all medications with no seizures for a year- > untill friday. She had a HUGE seizure(well, huge to me!) > on friday after noon. I saw this one. It scared me. She convulsed, > legs, > arms and head for 2 minutes, she was still and silent(I was afraid she > was > dead) for another 60 seconds, and it took her 40 minutes before she > could > talk again. > We know the depakote makes her feel like crap. > She gained 40 pounds in the first year of being on it. > We would like to try and start with diet, vitamins, or other methods > of > managing this but I just dont know where to start. > I have been searching on the web and seem to find some references to > Vitamin > B complexes and magnesium. > > Anybody got any suggestions? > Thank you so much. > Lori > Mom to ! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2002 Report Share Posted June 10, 2002 Dear Lori, Depakote was a terrible drug for me. Not only did it not control my seizures I, too, gained a lot of weight and also lost a significant amount of hair. My doctor switched me to another drug which was even worse, though I lost a lot of weight on it, and all I can say is that I'm not eager to get on any more drugs! What you wrote reminded me of my experience. During the course of my AED's, a GYN checked my levels of B-12, iron, and did another nutritional panel. My neurologist vehemently denied that AED's cause nutritional deficiencies, but I had low levels of B-12, magnesium, chromium, folic acid, manganese, zinc (which may have been due to too much copper), iron and some other nutrients. All of this is to say that, I think it would be wise to find someone who will check these things for your daughter, as well. B-complex deficiencies have been implicated by many AED's, and it's possible that your daughter's use of Depakote could have caused some problems that are not remedied in the normal course of our diet. We also learned that the high mineral content of our well water may have further upset the balance of minerals in my system. A further thought is that the estrogenic content of many foods these days may have upset your daughter's hormonal balance -- seizures often begin or get worse during puberty. I hope this is helpful to you. It is awful to have seizures as a teenager, when peer acceptance is so important! Best wishes, Carrol Lori Ransom <myplace@...> wrote: Hello- I am new to this group and searching for other peoples experiences. My daughter is 14 years old. When she was 12 she had her first seizure- I did not observe the actual seizing part, I found her unconscious on the kitchen floor and it took her 45 minutes to be able to talk or even recognise me. We went to a neurologist, she was on Depakote 250 three times a day for 18 mos. She had no other seizures. She had been off all medications with no seizures for a year- untill friday. She had a HUGE seizure(well, huge to me!) on friday after noon. I saw this one. It scared me. She convulsed, legs, arms and head for 2 minutes, she was still and silent(I was afraid she was dead) for another 60 seconds, and it took her 40 minutes before she could talk again. We know the depakote makes her feel like crap. She gained 40 pounds in the first year of being on it. We would like to try and start with diet, vitamins, or other methods of managing this but I just dont know where to start. I have been searching on the web and seem to find some references to Vitamin B complexes and magnesium. Anybody got any suggestions? Thank you so much. Lori Mom to ! Living and loving life. Happy, Joyous and free. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2002 Report Share Posted June 10, 2002 Patti Who ordered these tests and which lab provided the analysis? By the way, I get great control of EBV and CMV and others with officinalis tincture + l-Lysine. mjh In a message dated 6/11/02 12:43:59 AM Eastern Daylight Time, patti@... writes: > > > I did have extensive diagnostic tests done for parasites (negative), > candida (positive), heavy metals (high mercury) and a nutritional profile > which showed some common deficiencies among those with seizure disorders & > shy; > in particular, consistently high eosinophils and low lymphocytes, occasional > low carbon dioxide and high phosphorous, frequent herpes simplex infections, > positive Epstein-Barr mono spot, high anti-thyroglobulin, high estrogen, > high folic acid and high B-12, low cortisol, low taurine, low tyrosine, > problems with the Krebs cycle (low citrate, high citric accumulation), low > glutathione, low sulfate/creatinine ratio, low magnesium, high copper, low > vitamin E and Coenzyme Q10, low EFAs. She is now on supplements to correct > those deficiencies and had several DMPS treatments to chelate the mercury. > She is much healthier now & shy; fewer respiratory infections, fewer problems > with allergies, more energy. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2002 Report Share Posted June 10, 2002 Hello Lori, I read your message about your daughter¹s seizures and, since my daughter has had a similar experience, I thought it might be of interest to you. My daughter also had her first seizure at age 12  grand mal or tonic-clonic during math class. This was just a few months before menstruation and I strongly suspect a connection, though her neurologist would only admit that estrogen might exacerbate a seizure disorder, not cause it. There are many studies confirming the excitatory effect of estrogen on the brain. The hormone association is magnified by the fact that my mother was prescribed DES (diethylstilbestrol- a synthetic estrogen) when she was pregnant with me, which has had many deleterious effects on the offspring - and there are studies being conducting now on possible third generation effects. Just something else to complicate the picture! Anyway, we had the typical tests - normal CAT scan and MRI, but three seconds of spike poly-spike activity on the EEG confirmed the epilepsy diagnosis. She too was on depakote for one year, then slowly weaned and completely off of it for nine months and then had another seizure. She began depakote again and had the typical weight gain (20 lbs.) and then began taking topamax and discontinued depakote. The weight just melted off of her (she was small to begin with), and she has not had any severe side effects (she is on a fairly low dose, 125 mg. morning and night), though, of course, I would prefer that she did not have to take it at all. She is 18 and driving now and leaving for college shortly, so that complicates the matter a bit. The fact that she has had so few seizures is, indeed, a blessing, though it prohibits any experimentation with supplements since I cannot add this or delete that to see the effect - like your daughter, she may go 9 months or a year before having another seizure. I did have extensive diagnostic tests done for parasites (negative), candida (positive), heavy metals (high mercury) and a nutritional profile which showed some common deficiencies among those with seizure disorders  in particular, consistently high eosinophils and low lymphocytes, occasional low carbon dioxide and high phosphorous, frequent herpes simplex infections, positive Epstein-Barr mono spot, high anti-thyroglobulin, high estrogen, high folic acid and high B-12, low cortisol, low taurine, low tyrosine, problems with the Krebs cycle (low citrate, high citric accumulation), low glutathione, low sulfate/creatinine ratio, low magnesium, high copper, low vitamin E and Coenzyme Q10, low EFAs. She is now on supplements to correct those deficiencies and had several DMPS treatments to chelate the mercury. She is much healthier now  fewer respiratory infections, fewer problems with allergies, more energy. I have even thought about birth control pills to suppress her own hyperactive estrogen levels, but worry about giving her yet another drug, especially considering my exposure to synthetic estrogens. It is so hard to know what to do sometimes and I can confirm an oft repeated theme on this list- mainstream neurologists are interested in finding drugs to treat seizures not in discovering underlying causes. You have to read (this list is an excellent resource) and search for doctors who will entertain alternative ideas, tell them which tests to order and why (bring supporting literature, etc.). Just keep persevering! This is probably more information than you bargained for, but I just remember wishing I could find others with circumstances similar to my daughter¹s, especially in those early years. Please feel free to email me privately if you would like any further information. Best of luck to you and your daughter, Patti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2002 Report Share Posted June 10, 2002 Patti -- Thanks for sharing your experience! Just curious, how and where did you get such extensive testing done? Even visiting several naturopaths, a homeopath and a holistic doc, we've not had many of these tests done.--D --- Patti <patti@...> wrote: > I did have extensive diagnostic tests done for > parasites (negative), > candida (positive), heavy metals (high mercury) and > a nutritional profile > which showed some common deficiencies among those > with seizure disorders  > in particular, consistently high eosinophils and low > lymphocytes, occasional > low carbon dioxide and high phosphorous, frequent > herpes simplex infections, > positive Epstein-Barr mono spot, high > anti-thyroglobulin, high estrogen, > high folic acid and high B-12, low cortisol, low > taurine, low tyrosine, > problems with the Krebs cycle (low citrate, high > citric accumulation), low > glutathione, low sulfate/creatinine ratio, low > magnesium, high copper, low > vitamin E and Coenzyme Q10, low EFAs. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2002 Report Share Posted June 10, 2002 Hello DeEtte- I guess I have been fortunate to have a somewhat compliant primary care physician who has ordered some of the tests (at my urging). He monitored the usual chem 28 plus CBC values but also ordered the serum hormone tests for thyroid, estrogen, progesterone, etc., and has ordered separate tests for B12, folate, iron. The other, more esoteric tests were ordered by an environmental doctor. He is D.O. and had experience with a patient who was literally poisoned with mercury (from a lab directly above her office). Anyway, that's why we connected with him originally - and he ordered the toxic elements tests from Doctor's Data (www.doctorsdata.com) as well as the candida test (not sure which lab, I'll have to look this one up- may have been Great Smokies) and an extensive vitamin-metabolic profile / oxidative stress profile / fatty acids / amino acids analysis / urine organic profile - all of this performed by MetaMetrix Clinical Laboratory. He ordered all tests based on my daughter's history and symptoms and every one of them revealed some problem that we were able to address. I live in Texas, but he seems very " well-networked " - it may be possible that he knows of a " likeminded " physician in your area?? Patti On 6/10/02 11:47 PM, " DeEtte Person " <annarebecca85259@...> wrote:> Patti -- Thanks for sharing your experience! Just > curious, how and where did you get such extensive > testing done? Even visiting several naturopaths, a > homeopath and a holistic doc, we've not had many of > these tests done.--D > > --- Patti <patti@...> wrote: > >> I did have extensive diagnostic tests done for >> parasites (negative), >> candida (positive), heavy metals (high mercury) and >> a nutritional profile >> which showed some common deficiencies among those >> with seizure disorders ? >> in particular, consistently high eosinophils and low >> lymphocytes, occasional >> low carbon dioxide and high phosphorous, frequent >> herpes simplex infections, >> positive Epstein-Barr mono spot, high >> anti-thyroglobulin, high estrogen, >> high folic acid and high B-12, low cortisol, low >> taurine, low tyrosine, >> problems with the Krebs cycle (low citrate, high >> citric accumulation), low >> glutathione, low sulfate/creatinine ratio, low >> magnesium, high copper, low >> vitamin E and Coenzyme Q10, low EFAs. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2002 Report Share Posted June 11, 2002 Patti!!!! Thank you! Lots of great information. I have a couple questions for you- Has your daughter only had 2 seizures? Any idea where I can find a doctor with an open mind? or where to start looking for one? Also- We did put on low dose birth control 3 months ago becvause her LC? hormone was 3 x's higher than it should be. She had had one period then a year without and dr said the depakote would do that. She has had 3 regular ones now and is feeling better in that part. How did you get the dr to change to topamax? Thanks so much. Lori Living and loving life. Happy, Joyous and free. -- Re: [ ] Re: Questions Hello DeEtte- I guess I have been fortunate to have a somewhat compliant primary care physician who has ordered some of the tests (at my urging). He monitored the usual chem 28 plus CBC values but also ordered the serum hormone tests for thyroid, estrogen, progesterone, etc., and has ordered separate tests for B12, folate, iron. The other, more esoteric tests were ordered by an environmental doctor. He is D.O. and had experience with a patient who was literally poisoned with mercury (from a lab directly above her office). Anyway, that's why we connected with him originally - and he ordered the toxic elements tests from Doctor's Data (www.doctorsdata.com) as well as the candida test (not sure which lab, I'll have to look this one up- may have been Great Smokies) and an extensive vitamin-metabolic profile / oxidative stress profile / fatty acids / amino acids analysis / urine organic profile - all of this performed by MetaMetrix Clinical Laboratory. He ordered all tests based on my daughter's history and symptoms and every one of them revealed some problem that we were able to address. I live in Texas, but he seems very " well-networked " - it may be possible that he knows of a " likeminded " physician in your area?? Patti On 6/10/02 11:47 PM, " DeEtte Person " <annarebecca85259@...> wrote:> Patti -- Thanks for sharing your experience! Just > curious, how and where did you get such extensive > testing done? Even visiting several naturopaths, a > homeopath and a holistic doc, we've not had many of > these tests done.--D > > --- Patti <patti@...> wrote: > >> I did have extensive diagnostic tests done for >> parasites (negative), >> candida (positive), heavy metals (high mercury) and >> a nutritional profile >> which showed some common deficiencies among those >> with seizure disorders ? >> in particular, consistently high eosinophils and low >> lymphocytes, occasional >> low carbon dioxide and high phosphorous, frequent >> herpes simplex infections, >> positive Epstein-Barr mono spot, high >> anti-thyroglobulin, high estrogen, >> high folic acid and high B-12, low cortisol, low >> taurine, low tyrosine, >> problems with the Krebs cycle (low citrate, high >> citric accumulation), low >> glutathione, low sulfate/creatinine ratio, low >> magnesium, high copper, low >> vitamin E and Coenzyme Q10, low EFAs. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2002 Report Share Posted June 11, 2002 On 6/11/02 6:22 AM, " Lori Ransom " <myplace@...> wrote: Hi Lori- > I have a couple questions for you- > Has your daughter only had 2 seizures? She was having what we discovered, in retrospect, were absence seizures. I witnessed one the night before she had her first tonic-clonic seizure, but didn't realize what it was - I just thought she was daydreaming. After her second seizure she didn't have another for four years - and we were almost convinced that she never would - when she had one this year after drinking beer while visiting a college campus. Still not sure about this one - one doctor surmised that the topamax, which acts on the same receptors as alcohol, might actually exacerbate a withdrawal seizure. Regardless, she discovered - and just in time before leaving for college herself - that alcohol is out of the question for her. > Any idea where I can find a doctor with an open mind? I heard about our doctor from friends and also read about him in our local newspaper. But I also remember finding him in a reference on the web, but not sure exactly where - might do a search for " alternative medicine doctors " or " functional medicine " ? > or where to start looking for one? > Also- > We did put on low dose birth control 3 months ago becvause her LC? > hormone was 3 x's higher than it should be. She had had one period then a > year without and dr said the depakote would do that. She has had 3 regular > ones now and is feeling better in that part. > How did you get the dr to change to topamax? The side effects from depakote were interfering in her quality of life - I was also worried about the endocrine sequelae with depakote (PCOS, etc.), and the weight gain for a 15-year-old who had been a competitive gymnast - just made her feel depressed and out of control of any portion of her life. I discussed all of this with her neurologist and he suggested, for her type of epilepsy - generalized idiopathic in the juvenile absence syndrome - either topamax or lamictal. Best regards, Patti > > Thanks so much. > Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2002 Report Share Posted June 11, 2002 Dear Patti, Thank you for all you shared about your daughter. It's great to hear that she's doing so well, especially when heading off to college. That can be a stressful (but exciting) time, and it is so valuable to have her seizures so well under control! You mentioned putting your daughter on the pill and it raised some red flags for me. Though every manufacturer has a different formulation, the pill does contain estrogen. Have you considered progesterone? Your D.O. might be willing or able to help you with this. There is an over-the-counter cream by Emerita that is available in many health food stores -- and it is readily utilized by the body. (Emerita has a web site and a consumer phone line.) Though your daughter is hardly a candidate for most of the information in this book, " What Your Doctor May Not Tell You About Pre-Menopause, " by R. Lee has some great information about the chemistry of hormones and why progesterone helps balance hormones in our bodies. That's just a thought. Since I've struggled with hormones in relation to my epilepsy, I have learned the hard way that the pill and I are not compatible! :-) I hope this information is helpful to you. It sounds like you have done a great job of advocating for your daughter and her health! Best wishes, Carrol Patti <patti@...> wrote: Hello Lori, I read your message about your daughter¹s seizures and, since my daughter has had a similar experience, I thought it might be of interest to you. My daughter also had her first seizure at age 12 & shy; grand mal or tonic-clonic during math class. This was just a few months before menstruation and I strongly suspect a connection, though her neurologist would only admit that estrogen might exacerbate a seizure disorder, not cause it. There are many studies confirming the excitatory effect of estrogen on the brain. The hormone association is magnified by the fact that my mother was prescribed DES (diethylstilbestrol- a synthetic estrogen) when she was pregnant with me, which has had many deleterious effects on the offspring - and there are studies being conducting now on possible third generation effects. Just something else to complicate the picture! Anyway, we had the typical tests - normal CAT scan and MRI, but three seconds of spike poly-spike activity on the EEG confirmed the epilepsy diagnosis. She too was on depakote for one year, then slowly weaned and completely off of it for nine months and then had another seizure. She began depakote again and had the typical weight gain (20 lbs.) and then began taking topamax and discontinued depakote. The weight just melted off of her (she was small to begin with), and she has not had any severe side effects (she is on a fairly low dose, 125 mg. morning and night), though, of course, I would prefer that she did not have to take it at all. She is 18 and driving now and leaving for college shortly, so that complicates the matter a bit. The fact that she has had so few seizures is, indeed, a blessing, though it prohibits any experimentation with supplements since I cannot add this or delete that to see the effect - like your daughter, she may go 9 months or a year before having another seizure. I did have extensive diagnostic tests done for parasites (negative), candida (positive), heavy metals (high mercury) and a nutritional profile which showed some common deficiencies among those with seizure disorders & shy; in particular, consistently high eosinophils and low lymphocytes, occasional low carbon dioxide and high phosphorous, frequent herpes simplex infections, positive Epstein-Barr mono spot, high anti-thyroglobulin, high estrogen, high folic acid and high B-12, low cortisol, low taurine, low tyrosine, problems with the Krebs cycle (low citrate, high citric accumulation), low glutathione, low sulfate/creatinine ratio, low magnesium, high copper, low vitamin E and Coenzyme Q10, low EFAs. She is now on supplements to correct those deficiencies and had several DMPS treatments to chelate the mercury. She is much healthier now & shy; fewer respiratory infections, fewer problems with allergies, more energy. I have even thought about birth control pills to suppress her own hyperactive estrogen levels, but worry about giving her yet another drug, especially considering my exposure to synthetic estrogens. It is so hard to know what to do sometimes and I can confirm an oft repeated theme on this list- mainstream neurologists are interested in finding drugs to treat seizures not in discovering underlying causes. You have to read (this list is an excellent resource) and search for doctors who will entertain alternative ideas, tell them which tests to order and why (bring supporting literature, etc.). Just keep persevering! This is probably more information than you bargained for, but I just remember wishing I could find others with circumstances similar to my daughter¹s, especially in those early years. Please feel free to email me privately if you would like any further information. Best of luck to you and your daughter, Patti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2002 Report Share Posted June 11, 2002 Carrol, Thanks so much for your message and the information about progesterone. I am familiar with Lee's book and use progesterone cream myself. I have discussed it with my daughter's doctors, as well, and might try it with her in the second half of her cycle. The thinking behind the birth control pills is that, even though it would add estrogen to her system, the feedback mechanism would reduce the wildly fluctuating levels that she currently produces and result in more stable hormonal levels - but I am still reluctant, especially given my history (and my mother's) with synthetic estrogen. I really appreciate and enjoy reading all of your responses. You are a sensitive, reasoned, compassionate voice! Thank you! Patti On 6/11/02 12:53 PM, " Carrol Showalter " <ColoradoCarrol@...> wrote: > > Dear Patti, > Thank you for all you shared about your daughter. It's great to hear that > she's doing so well, especially when heading off to college. That can be a > stressful (but exciting) time, and it is so valuable to have her seizures so > well under control! > > You mentioned putting your daughter on the pill and it raised some red flags > for me. Though every manufacturer has a different formulation, the pill does > contain estrogen. Have you considered progesterone? Your D.O. might be > willing or able to help you with this. There is an over-the-counter cream by > Emerita that is available in many health food stores -- and it is readily > utilized by the body. (Emerita has a web site and a consumer phone line.) > Though your daughter is hardly a candidate for most of the information in this > book, " What Your Doctor May Not Tell You About Pre-Menopause, " by R. Lee > has some great information about the chemistry of hormones and why > progesterone helps balance hormones in our bodies. That's just a thought. > Since I've struggled with hormones in relation to my epilepsy, I have learned > the hard way that the pill and I are not compatible! :-) > > I hope this information is helpful to you. It sounds like you have done a > great job of advocating for your daughter and her health! > > Best wishes, > Carrol > > > Patti <patti@...> wrote: Hello Lori, > I read your message about your daughters seizures and, since my daughter > has had a similar experience, I thought it might be of interest to you. My > daughter also had her first seizure at age 12 & shy; grand mal or tonic-clonic > during math class. This was just a few months before menstruation and I > strongly suspect a connection, though her neurologist would only admit that > estrogen might exacerbate a seizure disorder, not cause it. There are many > studies confirming the excitatory effect of estrogen on the brain. The > hormone association is magnified by the fact that my mother was prescribed > DES (diethylstilbestrol- a synthetic estrogen) when she was pregnant with > me, which has had many deleterious effects on the offspring - and there are > studies being conducting now on possible third generation effects. Just > something else to complicate the picture! > > Anyway, we had the typical tests - normal CAT scan and MRI, but three > seconds of spike poly-spike activity on the EEG confirmed the epilepsy > diagnosis. She too was on depakote for one year, then slowly weaned and > completely off of it for nine months and then had another seizure. She began > depakote again and had the typical weight gain (20 lbs.) and then began > taking topamax and discontinued depakote. The weight just melted off of her > (she was small to begin with), and she has not had any severe side effects > (she is on a fairly low dose, 125 mg. morning and night), though, of course, > I would prefer that she did not have to take it at all. She is 18 and > driving now and leaving for college shortly, so that complicates the matter > a bit. The fact that she has had so few seizures is, indeed, a blessing, > though it prohibits any experimentation with supplements since I cannot add > this or delete that to see the effect - like your daughter, she may go 9 > months or a year before having another seizure. > > I did have extensive diagnostic tests done for parasites (negative), > candida (positive), heavy metals (high mercury) and a nutritional profile > which showed some common deficiencies among those with seizure disorders & shy; > in particular, consistently high eosinophils and low lymphocytes, occasional > low carbon dioxide and high phosphorous, frequent herpes simplex infections, > positive Epstein-Barr mono spot, high anti-thyroglobulin, high estrogen, > high folic acid and high B-12, low cortisol, low taurine, low tyrosine, > problems with the Krebs cycle (low citrate, high citric accumulation), low > glutathione, low sulfate/creatinine ratio, low magnesium, high copper, low > vitamin E and Coenzyme Q10, low EFAs. She is now on supplements to correct > those deficiencies and had several DMPS treatments to chelate the mercury. > She is much healthier now & shy; fewer respiratory infections, fewer problems > with allergies, more energy. > > I have even thought about birth control pills to suppress her own > hyperactive estrogen levels, but worry about giving her yet another drug, > especially considering my exposure to synthetic estrogens. It is so hard to > know what to do sometimes and I can confirm an oft repeated theme on this > list- mainstream neurologists are interested in finding drugs to treat > seizures not in discovering underlying causes. You have to read (this list > is an excellent resource) and search for doctors who will entertain > alternative ideas, tell them which tests to order and why (bring supporting > literature, etc.). Just keep persevering! > > This is probably more information than you bargained for, but I just > remember wishing I could find others with circumstances similar to my > daughters, especially in those early years. Please feel free to email me > privately if you would like any further information. > > Best of luck to you and your daughter, > Patti > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2002 Report Share Posted June 11, 2002 Dear Patti, Thank you so much for your kind words! I suppose that dealing with difficult health issues and the resulting problems can be draining, and it really is nice to hear something positive from someone else. Thank you! You made my day! I'm eager to hear how your daughter does with the progesterone cream. Please keep us posted! Best wishes, Carrol Patti <patti@...> wrote: Carrol, Thanks so much for your message and the information about progesterone. I am familiar with Lee's book and use progesterone cream myself. I have discussed it with my daughter's doctors, as well, and might try it with her in the second half of her cycle. The thinking behind the birth control pills is that, even though it would add estrogen to her system, the feedback mechanism would reduce the wildly fluctuating levels that she currently produces and result in more stable hormonal levels - but I am still reluctant, especially given my history (and my mother's) with synthetic estrogen. I really appreciate and enjoy reading all of your responses. You are a sensitive, reasoned, compassionate voice! Thank you! Patti On 6/11/02 12:53 PM, " Carrol Showalter " <ColoradoCarrol@...> wrote: > > Dear Patti, > Thank you for all you shared about your daughter. It's great to hear that > she's doing so well, especially when heading off to college. That can be a > stressful (but exciting) time, and it is so valuable to have her seizures so > well under control! > > You mentioned putting your daughter on the pill and it raised some red flags > for me. Though every manufacturer has a different formulation, the pill does > contain estrogen. Have you considered progesterone? Your D.O. might be > willing or able to help you with this. There is an over-the-counter cream by > Emerita that is available in many health food stores -- and it is readily > utilized by the body. (Emerita has a web site and a consumer phone line.) > Though your daughter is hardly a candidate for most of the information in this > book, " What Your Doctor May Not Tell You About Pre-Menopause, " by R. Lee > has some great information about the chemistry of hormones and why > progesterone helps balance hormones in our bodies. That's just a thought. > Since I've struggled with hormones in relation to my epilepsy, I have learned > the hard way that the pill and I are not compatible! :-) > > I hope this information is helpful to you. It sounds like you have done a > great job of advocating for your daughter and her health! > > Best wishes, > Carrol > > > Patti <patti@...> wrote: Hello Lori, > I read your message about your daughters seizures and, since my daughter > has had a similar experience, I thought it might be of interest to you. My > daughter also had her first seizure at age 12 & shy; grand mal or tonic-clonic > during math class. This was just a few months before menstruation and I > strongly suspect a connection, though her neurologist would only admit that > estrogen might exacerbate a seizure disorder, not cause it. There are many > studies confirming the excitatory effect of estrogen on the brain. The > hormone association is magnified by the fact that my mother was prescribed > DES (diethylstilbestrol- a synthetic estrogen) when she was pregnant with > me, which has had many deleterious effects on the offspring - and there are > studies being conducting now on possible third generation effects. Just > something else to complicate the picture! > > Anyway, we had the typical tests - normal CAT scan and MRI, but three > seconds of spike poly-spike activity on the EEG confirmed the epilepsy > diagnosis. She too was on depakote for one year, then slowly weaned and > completely off of it for nine months and then had another seizure. She began > depakote again and had the typical weight gain (20 lbs.) and then began > taking topamax and discontinued depakote. The weight just melted off of her > (she was small to begin with), and she has not had any severe side effects > (she is on a fairly low dose, 125 mg. morning and night), though, of course, > I would prefer that she did not have to take it at all. She is 18 and > driving now and leaving for college shortly, so that complicates the matter > a bit. The fact that she has had so few seizures is, indeed, a blessing, > though it prohibits any experimentation with supplements since I cannot add > this or delete that to see the effect - like your daughter, she may go 9 > months or a year before having another seizure. > > I did have extensive diagnostic tests done for parasites (negative), > candida (positive), heavy metals (high mercury) and a nutritional profile > which showed some common deficiencies among those with seizure disorders & shy; > in particular, consistently high eosinophils and low lymphocytes, occasional > low carbon dioxide and high phosphorous, frequent herpes simplex infections, > positive Epstein-Barr mono spot, high anti-thyroglobulin, high estrogen, > high folic acid and high B-12, low cortisol, low taurine, low tyrosine, > problems with the Krebs cycle (low citrate, high citric accumulation), low > glutathione, low sulfate/creatinine ratio, low magnesium, high copper, low > vitamin E and Coenzyme Q10, low EFAs. She is now on supplements to correct > those deficiencies and had several DMPS treatments to chelate the mercury. > She is much healthier now & shy; fewer respiratory infections, fewer problems > with allergies, more energy. > > I have even thought about birth control pills to suppress her own > hyperactive estrogen levels, but worry about giving her yet another drug, > especially considering my exposure to synthetic estrogens. It is so hard to > know what to do sometimes and I can confirm an oft repeated theme on this > list- mainstream neurologists are interested in finding drugs to treat > seizures not in discovering underlying causes. You have to read (this list > is an excellent resource) and search for doctors who will entertain > alternative ideas, tell them which tests to order and why (bring supporting > literature, etc.). Just keep persevering! > > This is probably more information than you bargained for, but I just > remember wishing I could find others with circumstances similar to my > daughters, especially in those early years. Please feel free to email me > privately if you would like any further information. > > Best of luck to you and your daughter, > Patti > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2002 Report Share Posted June 16, 2002 Thank you -- this is helpful. If you get a chance, could you ask him if he knows of anyone in the Phoenix, AZ area? Thanks again!--D --- Patti <patti@...> wrote: > Hello DeEtte- I guess I have been fortunate to have > a somewhat compliant > primary care physician who has ordered some of the > tests (at my urging). He > monitored the usual chem 28 plus CBC values but also > ordered the serum > hormone tests for thyroid, estrogen, progesterone, > etc., and has ordered > separate tests for B12, folate, iron. The other, > more esoteric tests were > ordered by an environmental doctor. He is D.O. and > had experience with a > patient who was literally poisoned with mercury > (from a lab directly above > her office). Anyway, that's why we connected with > him originally - and he > ordered the toxic elements tests from Doctor's Data > (www.doctorsdata.com) > as well as the candida test (not sure which lab, > I'll have to look this one > up- may have been Great Smokies) and an extensive > vitamin-metabolic profile > / oxidative stress profile / fatty acids / amino > acids analysis / urine > organic profile - all of this performed by > MetaMetrix Clinical Laboratory. > He ordered all tests based on my daughter's history > and symptoms and every > one of them revealed some problem that we were able > to address. I live in > Texas, but he seems very " well-networked " - it may > be possible that he knows > of a " likeminded " physician in your area?? > Patti > > > On 6/10/02 11:47 PM, " DeEtte Person " > <annarebecca85259@...> wrote:> > Patti -- Thanks for sharing your experience! Just > > curious, how and where did you get such extensive > > testing done? Even visiting several naturopaths, > a > > homeopath and a holistic doc, we've not had many > of > > these tests done.--D > > > > --- Patti <patti@...> wrote: > > > >> I did have extensive diagnostic tests done for > >> parasites (negative), > >> candida (positive), heavy metals (high mercury) > and > >> a nutritional profile > >> which showed some common deficiencies among those > >> with seizure disorders ? > >> in particular, consistently high eosinophils and > low > >> lymphocytes, occasional > >> low carbon dioxide and high phosphorous, frequent > >> herpes simplex infections, > >> positive Epstein-Barr mono spot, high > >> anti-thyroglobulin, high estrogen, > >> high folic acid and high B-12, low cortisol, low > >> taurine, low tyrosine, > >> problems with the Krebs cycle (low citrate, high > >> citric accumulation), low > >> glutathione, low sulfate/creatinine ratio, low > >> magnesium, high copper, low > >> vitamin E and Coenzyme Q10, low EFAs. > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2002 Report Share Posted June 26, 2002 Yes find a new Ruemy, or sit down with him or her, and be firm. The ruemy is probably not up on PA. Also point him or her to this group. Maybe he will learn something :-) I tried the Celebrex for about 6 weeks. It did nothing for me. Went to Viox, it worked great, but messed with my stomach, and had to quit that. I wound up on Methotrexate (MTX). Now I am on the MTX (shots), and Remicade infusions. I have had 3 Remicade infusions. It took the third one for me to begin feeling relief. That was about 5 weeks ago. Yesterday (Tuesday) I began feeling the pain come back. I have another 3 weeks before my next Remicade infusion. I do not think I will make it til then. Tingling, is something I experience after sitting or kneeling for short periods at a time. Don't give up, be very agressive with the Ruemy. If you can begin getting the right treatment early, you may be able to get a hold on the PA before it gets too serious. Good luck, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2002 Report Share Posted June 27, 2002 I agree on the " Find another rhuemy " advice. I have never had any nail detachment, only pits, and that is the first thing my rhuemy looked at! Are you a member of the Arthritis Foundation? They put out a magazine with your membership called Arthritis Today and they had an article a month or so ago discussing what you described in your legs. I think they referred to it as restless leg syndrome. I don't have that particular sympton (yet) so I didn't pay much attention to it. Good luck in the rhuemy search- Eva in AR kweezon@... wrote: I saw a rheumy for the first time a few weeks ago--he did basically nothing for me except to tell me to continue to use the Celebrex that my gp gave me a script for. He didn't think that I had any joint damage,swelling or limited movement. My hands were visibally swollen (that's one reason my gp sent me to him in the first place). He also told me that the kind of nail pitting that I have is not the kind that goes with PA! He said that my nails were not detatching from the beds and that's what happens with the PA. My nails were starting to come off the beds but I started to clean out the goop under them and they improved. I still have the pitting though. My dermie told me it was P and not a nail fungus. As a matter of fact, my dermie is the one who told me I had PA. The rheumy did suggest a bone scan but thought I should wait until a later time to have that done. I've been using the Celebrex for over three weeks now and I haven't seen any improvement in my pain. How long before the Celebrex usually kicks in? Another question. Is it normal to have tingling and falling asleep sensations with the PA? My one knee is very painful and it gives me a lot of problems when I'm getting up from a sitting or squatting position. It drives me crazy to shave that one leg! At night, when I get into my recliner, my leg gets really weird on me. I get the same feelings in my right hand too--mostly in the am. Is this a nerve problem or is it from the PA? Thanks for any help, dee in Pa [ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2002 Report Share Posted August 28, 2002 Kat, This may sound gross but I don't know how else to say it. When I had my bleeds I had extreme fatigue. (Worse than normal that day) I had a BM that was black and tarry looking. I never vomitted blood. Hope this info helps. (Sorry to be so graphic but that's the only way I know how to tell you what happened.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2002 Report Share Posted August 28, 2002 If you have necrotic tissue,shouldnt it be removed? Shireen >From: " rkh657 " <rkh657@...> >Reply- > >Subject: [ ] Questions >Date: Wed, 28 Aug 2002 21:08:54 -0000 > >Hi Everyone, I was diagnosed in Feb. of '01 with AIH and have had a >relatively uneventful case of it thus far; doc said I probably have >had it for at least 15 years but my symptoms were so mild that it >went undiagnosed. My LFT's have been within normal limits for over a >year now though my biopsies continue to show inflammation, fibrosis >and necrosis. The last one showed less of each-the doctor said he may >have " just hit a healthier part " of my liver. I am on Imuran 100mgs >daily and luckily, have not had to be on Prednisone. I am wondering >about the symptoms of esophageal varicies-are there any other >symptoms than bleeding? I had an endoscopy a year ago and that showed >a hiatal hernia but no varicies. I sometimes have discomfort under my >sternum on the left side (cardiac origin ruled out) and it hurts at >times when swallowing firm foods or large bites. Seems to come and >go. I was also wondering how everyone manages with the fatigue and >yet continues to work. No matter how I try to arrange my schedule, I >always seem to tire out and I only work part-time! >Anyway, many blessings to all of you out there-I have learned much >from all your messages and feel very hopeful. Thanks for any help. >Kat > _________________________________________________________________ MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2002 Report Share Posted August 29, 2002 > Kat, > > This may sound gross but I don't know how else to say it. When I had my > bleeds I had extreme fatigue. (Worse than normal that day) I had a BM that > was black and tarry looking. I never vomitted blood. Hope this info helps. > (Sorry to be so graphic but that's the only way I know how to tell you what > happened.) > > , Yes, your information helps alot! Now I know a bit more of what to expect if it happens to me. Have a good Labor Day! Kat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2002 Report Share Posted August 29, 2002 No, my doc has never said anything about doing that. Has anyone else ever heard of removing necrotic liver tissue? Thanks! Kat > If you have necrotic tissue,shouldnt it be removed? > > Shireen > > > >From: " rkh657 " <rkh657@y...> > >Reply- @y... > > @y... > >Subject: [ ] Questions > >Date: Wed, 28 Aug 2002 21:08:54 -0000 > > > >Hi Everyone, I was diagnosed in Feb. of '01 with AIH and have had a > >relatively uneventful case of it thus far; doc said I probably have > >had it for at least 15 years but my symptoms were so mild that it > >went undiagnosed. My LFT's have been within normal limits for over a > >year now though my biopsies continue to show inflammation, fibrosis > >and necrosis. The last one showed less of each-the doctor said he may > >have " just hit a healthier part " of my liver. I am on Imuran 100mgs > >daily and luckily, have not had to be on Prednisone. I am wondering > >about the symptoms of esophageal varicies-are there any other > >symptoms than bleeding? I had an endoscopy a year ago and that showed > >a hiatal hernia but no varicies. I sometimes have discomfort under my > >sternum on the left side (cardiac origin ruled out) and it hurts at > >times when swallowing firm foods or large bites. Seems to come and > >go. I was also wondering how everyone manages with the fatigue and > >yet continues to work. No matter how I try to arrange my schedule, I > >always seem to tire out and I only work part-time! > >Anyway, many blessings to all of you out there-I have learned much > >from all your messages and feel very hopeful. Thanks for any help. > >Kat > > > > > > > _________________________________________________________________ > MSN Photos is the easiest way to share and print your photos: > http://photos.msn.com/support/worldwide.aspx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2002 Report Share Posted August 30, 2002 I don’t know how it could be removed since it’s on a microscopic scale. It would just have to resorb on it’s own. [ ] Questions > >Date: Wed, 28 Aug 2002 21:08:54 -0000 > > > >Hi Everyone, I was diagnosed in Feb. of '01 with AIH and have had a > >relatively uneventful case of it thus far; doc said I probably have > >had it for at least 15 years but my symptoms were so mild that it > >went undiagnosed. My LFT's have been within normal limits for over a > >year now though my biopsies continue to show inflammation, fibrosis > >and necrosis. The last one showed less of each-the doctor said he may > >have " just hit a healthier part " of my liver. I am on Imuran 100mgs > >daily and luckily, have not had to be on Prednisone. I am wondering > >about the symptoms of esophageal varicies-are there any other > >symptoms than bleeding? I had an endoscopy a year ago and that showed > >a hiatal hernia but no varicies. I sometimes have discomfort under my > >sternum on the left side (cardiac origin ruled out) and it hurts at > >times when swallowing firm foods or large bites. Seems to come and > >go. I was also wondering how everyone manages with the fatigue and > >yet continues to work. No matter how I try to arrange my schedule, I > >always seem to tire out and I only work part-time! > >Anyway, many blessings to all of you out there-I have learned much > >from all your messages and feel very hopeful. Thanks for any help. > >Kat > > > > > > > _________________________________________________________________ > MSN Photos is the easiest way to share and print your photos: > http://photos.msn.com/support/worldwide.aspx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2002 Report Share Posted August 30, 2002 I have never heard of removing necrotic tissue. I think doing so may cause scarring. Necrotic tissue is sloughed off by the body and gets washed away in the bloodstream. I had asked my Doctor about this after I had a biopsy that showed necrosis. That was the information that he gave me and apparently he was right because my most recent biopsy showed no necrosis...YAY! Soooo.......I wouldn't worry bout it! >From: "lisa m skowron" >Reply- > >Subject: RE: [ ] Re: Questions >Date: Fri, 30 Aug 2002 06:48:31 -0500 > >I don't know how it could be removed since it's on a microscopic scale. >It would just have to resorb on it's own. > > > > [ ] Questions > > >Date: Wed, 28 Aug 2002 21:08:54 -0000 > > > > > >Hi Everyone, I was diagnosed in Feb. of '01 with AIH and have had a > > >relatively uneventful case of it thus far; doc said I probably have > > >had it for at least 15 years but my symptoms were so mild that it > > >went undiagnosed. My LFT's have been within normal limits for over >a > > >year now though my biopsies continue to show inflammation, fibrosis > > >and necrosis. The last one showed less of each-the doctor said he >may > > >have "just hit a healthier part" of my liver. I am on Imuran 100mgs > > >daily and luckily, have not had to be on Prednisone. I am wondering > > >about the symptoms of esophageal varicies-are there any other > > >symptoms than bleeding? I had an endoscopy a year ago and that >showed > > >a hiatal hernia but no varicies. I sometimes have discomfort under >my > > >sternum on the left side (cardiac origin ruled out) and it hurts at > > >times when swallowing firm foods or large bites. Seems to come and > > >go. I was also wondering how everyone manages with the fatigue and > > >yet continues to work. No matter how I try to arrange my schedule, >I > > >always seem to tire out and I only work part-time! > > >Anyway, many blessings to all of you out there-I have learned much > > >from all your messages and feel very hopeful. Thanks for any help. > > >Kat > > > > > > > > > > > > > _________________________________________________________________ > > MSN Photos is the easiest way to share and print your photos: > > http://photos.msn.com/support/worldwide.aspx > > > > > > Quote Link to comment Share on other sites More sharing options...
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