Guest guest Posted December 29, 1998 Report Share Posted December 29, 1998 you are not nuts...my hubby goes thru the same thing at nite...his legs wake him up sometimes...the dr said just to take more Neurontin 400mg. everytime I give that to him it seems to work. Coleen :-) Reunited adoptee phone/fax Missing Links,Grants Pass, Or. fredmom@... or fredmom@... http://www.barysoftware.com &%&%&%&%&%&%&%&%&%&%&%&%&%&%&%&%&%&%&%&%&% Oregon Adoptee Rights Initiative Measure 58 Our Birth Certificate: Our Right http://www.plumsite.com/oregon/ new to the group I have read with interst the mail i have been receiving since i joined the group. i have been fighting with RLS for about 12 years. i had all the symptoms, but never realized what i had until i was reading an article in a magazine. i am currently taking elavil 20 mg and neurontin 300mg a night. this worked great for a while,but i have an appt with my doctor next week . i can't seem to sleep over 3 hours a nite. hope this is'nt to long. everybody i tell about this looks at me like i'm nuts tony 51 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 1998 Report Share Posted December 29, 1998 Tony, you're not nuts, you're one of us! Welcome to the group. Try mirapex! ne, 58, Lawrenceville, NJ On Tue, 29 Dec 1998 21:17:08 -0500 " Mizzell " emizzell@...> writes: > > >This is a multi-part message in MIME format. > >------=_NextPart_000_0064_01BE3370.979AA240 >Content-Type: text/plain; > charset= " iso-8859-1 " >Content-Transfer-Encoding: quoted-printable > >I have read with interst the mail i have been receiving since i >joined = >the group. >i have been fighting with RLS for about 12 years. i had all the = >symptoms, but never realized what i had until i was reading an article >= >in a magazine. i am currently taking elavil 20 mg and neurontin 300mg >a = >night. this worked great for a while,but >i have an appt with my doctor next week . i can't seem to sleep over 3 >= >hours a nite. hope this is'nt to long. everybody i tell about this >looks = >at me like i'm nuts > > > = > tony 51 > >------=_NextPart_000_0064_01BE3370.979AA240 >Content-Type: text/html; > charset= " iso-8859-1 " >Content-Transfer-Encoding: quoted-printable > > > > > > http-equiv=3DContent-Type> > > > >I have read with interst the >= >mail i have=20 >been receiving since i joined the group. >i have been fighting with RLS for >= >about 12=20 >years. i had all the symptoms, but never realized what i had until i >was = >reading=20 >an article in a magazine. i am currently taking elavil 20 mg and = >neurontin 300mg=20 >a night. this worked great for a while,but >i have an appt with my doctor next >= >week . i=20 >can't seem to sleep over 3 hours a nite. hope this is'nt to long. = >everybody i=20 >tell about this looks at me like i'm nuts > >size=3D2> &nbs= >p; = >; = > &= >nbsp; &n= >bsp; &nb= >sp; &nbs= >p; =20 >tony 51 > >------=_NextPart_000_0064_01BE3370.979AA240-- > > ___________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com/getjuno.html or call Juno at (800) 654-JUNO [654-5866] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 1998 Report Share Posted December 29, 1998 Hi Tony Welcome to the group. People may look at you like you are nuts because they have no knowledge of RLS. We all have been there, but things are getting better. RLS is being recognized and accepted more and more. As far as your medication goes, Elavil is a tricyclic antidepressant. This group of drugs frequently aggravates RLS and should be taken cautiously by RLS patients if at all. If Neurontin worked before at the relatively low dosage you are taking, I would suggest increasing the dose. You have plenty of room. Doses of 2400 mg/day are not uncommon. You may notice dizziness and sleepiness, but other side effects are usually not prominent. If you get no relief of symptoms from increased Neurontin, I would suggest Mirapex 0.125 mg three times a day. A good review of RLS can be found at http://www.wemove.org> You can print this material and show it to your doctor or to anybody else who is interested. Best of luck and Happy New Year Dr. Levin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 1998 Report Share Posted December 29, 1998 Hi there everyone, I am new to the group as well. I have read here about the drugs that people take for RLS, does anyone have any suggestions for non-drug therapy. What about foods to eat and foods to avoid. I prefer to use nutrition as treatment if at all possible. TIA, Deborah To snip or not to snip... whether tis nobler to save your fellow supporters the pain of the download, -- or to suffer the slings and arrows of their medicated flaming. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 1998 Report Share Posted December 30, 1998 Tony if you're nuts, we're all nuts. I think most of us have had that " it's all in your head " stuff thrown at us. I take Permax and am usually able to sleep from 5 to 7 hours a night with a couple of wakeful episodes that don't last long. Keep at it and don't get discouraged. Cheers and Happy New Year!! Jeanne and Mr. Biggles in Poultney, VT It's SNOWING!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 1998 Report Share Posted December 30, 1998 Hi Tony: Welcome to the group. Isn't it nice to find a group of people who actually share a medical problem that you thought only you had? Can't really tell if you are nuts from your brief post but I suppose if you are, then we must be also. I got a break on this disease because several others in my family have it. Seems that I am the only person who has sought treatment for it. After 45 years, I can actually sleep and feel like I slept in the morning. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 1998 Report Share Posted December 30, 1998 Hi Tony: Welcome to the group. Isn't it nice to find a group of people who actually share a medical problem that you thought only you had? Can't really tell if you are nuts from your brief post but I suppose if you are, then we must be also. I got a break on this disease because several others in my family have it. Seems that I am the only person who has sought treatment for it. After 45 years, I can actually sleep and feel like I slept in the morning. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 1999 Report Share Posted April 26, 1999 I can honestly say that what I feel with RLS is not, in a strict sense, pain. If I can't get relief from the pulsating, twitching, radiating buzzing feeling from the bone out it often results in a world class charley-horse. But it seldom gets to that point as I get up and move about to prevent it from progressing much further. By that time I'm roaming the house if it's at night, looking for an activity that will help - anything from cleaning the bathroom to sinking into a hot bubble bath. Welcome to the group by the way. I hope you'll find something here that helps. Cheers!! Jeanne and Mr. Biggles in Poultney Vt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 1999 Report Share Posted April 26, 1999 I can honestly say that what I feel with RLS is not, in a strict sense, pain. If I can't get relief from the pulsating, twitching, radiating buzzing feeling from the bone out it often results in a world class charley-horse. But it seldom gets to that point as I get up and move about to prevent it from progressing much further. By that time I'm roaming the house if it's at night, looking for an activity that will help - anything from cleaning the bathroom to sinking into a hot bubble bath. Welcome to the group by the way. I hope you'll find something here that helps. Cheers!! Jeanne and Mr. Biggles in Poultney Vt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2000 Report Share Posted February 2, 2000 Hello-- Becca here!! , Welcome!!! I feel the best therapy for me has been exercising. I walk and work out to the relative best of my ability. It helps me to be able to make it through the days. http://www.onelist.com/subscribe/CMTweightmanagement Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2002 Report Share Posted July 15, 2002 Having found a cyst on your pancreas, high urine amylase + an inflamed pancreas, there's no doubt you had an attack of acute pancreatitis. Whether it's in the chronic stage is more difficult to determine. There are several causes for pancreatitis. 1 is alcohol consumption (since you've had 1 attack of pancreatitis you shud never drink alcohol again, if u do). Another is gallstones (I have + many others have had their gallbladder removed). Yet another is high triglycerides (this happens to be my cause). My levels run around 2000; whereas, the norm is 150. My body has a genetic defect which disallows it from adequately metabolizing triglycerides. It's called type 5 hyperlipidemia. There are other causes; including heredity. This is the right place to come to learn some info on pancreatitis. We aren't experts, but we can speak from our own experiences. in Arizona. (Boy, Japan, huh! I bet there are long lines. I read somewhere that Tokyo is the most populated city in the world). -- On Mon, 15 Jul 2002 18:38:24 Ron wrote: >Hello to you all, > >My name is Ron , and I'm 32. I live in Japan, just north of Tokyo. I >have not been " officially " diagnosed with CP, but I'm afraid it's just >around the corner. If you don't mind, read on and either then tell me I >don't belong here or that I have found my home. > >In late May I woke up with excruciating pain in my lower abdomen. It took me >a good hour to get out of bed. I had a presentation to give later that day, >so after the pain subsided I went about my business. My wife thought I might >have pain from constipation, so I took a laxative. I felt a bit >uncomfortable the rest of the day and diarrhea started at 4pm, just an hour >after my presentation thank goodness. That night I woke up three different >times with a burning sensation in my chest. The next day followed with more >uncomfortableness. Monday, two days later, I went to see a doctor. > >For the first 10 days of all of this, the clinic prescribed medicine, which >I'm still taking at this moment. During the first ten days I discomfort >never really went away and I began to have some mid-back pain. Two weeks >after the on-sent my doctor did an endoscopy (looking for ulcers) and >followed with a CT and an ultrasound. The CT showed an inflamed pancreas. >The first blood work I had showed the following: > >high amylase in my urine, which was down 10 days ago to " normal " >low red blood cell count >a bit low hematocrit count >a bit long prothrombin time >a bit high ZTT (I don't know what this is) >low cholesterol level > >To shorten this up a bit, after that two week mark, I have undergone a total >of three CTs, one MRI and three ultrasounds and a lot of blood work. They >(thought they) found a tumor in my pancreas, but upon a visit to the >National Cancer Center here those doctors ruled out cancer after doing a CT >and more blood work. But a 3cm " something " shows up within the midst of my >pancreas on CTs. Also the CT at the Cancer Center had reduced in size >considerably from a CT taken just four days earlier. > >Last week I was out of town due to work. Tomorrow I see my doctor and will >ask for a reference to a pancreas specialist. > >All of this has brought to my awareness that I cannot remember when my >constipation/diarrhea mix first began. I have horrible (frightening!) gas. >And I have a history of getting shakey, short tempered, and confused when >I'm in the need for food. Since the end of May I have lost 15 pounds. I'm >down to 139. I'm 5 feet 11 inches. My wife and I have been reading a lot >lately, so I'm on a non-fat, low-calorie diet. My blood glucose levels have >been " normal " . > >All of this is still very confusing for us, which should be apparent due to >this " all-over-the-place " e-mail. :-) > >At times I don't worry too much, and then at times like now when I think >about it all put together, it gets a bit scarier. > >The medical system here in Japan has its positives and negatives, the main >ones being lost cost and long waits. > >From all of your experiences, am I in the right place, talking with the >right people? > >Many thank yous for reading this far. > >My best, > >Ron > > > > _____________________________________________________ Supercharge your e-mail with a 25MB Inbox, POP3 Access, No Ads and NoTaglines --> LYCOS MAIL PLUS. http://www.mail.lycos.com/brandPage.shtml?pageId=plus Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2002 Report Share Posted July 26, 2002 --- , Thank you for responding to my post what is pancreatic divisum? I am also sorry that you had a real tough time too, I am so happy that you are doing well now. I just posted about my ercp and how I got worse after it too, and dr, wants to see if I develped a psueodocyst. I wont repeat myself lol, but, I think that he dont want to admit that the ercp just made me worse. who knows?? I 'll find out for sure after ctscan. You r my age too. Do you know how you got your cp?? I also posted before about genetic testing ...did u do that?? Rosemary In pancreatitis@y..., " SHANNON TUTEN " wrote: > > Rosemary: > > Welcome. boy it sure sounds like you have been through it. Really a psych > hosp? thats amazing. but belivable many of us had a dificult time with an > accurate diagnosis. Sorry to hear of your problems now. The mere mention of > an ERCP sends some into a frenzy. Alotof complications, more problems > following than before. > My name is . I am 35 and I have been diagnosed for 7 years. I have > pancreatic divisum and sphicter of oddi I have had many ERCP's with > sphincterotomies,stents. etc... For whatever reason I am doing well at the > moment but that has not always been the case I've been hospitalized over 40 > times in those years. I think one year I counted I was home a total of 50 > days -- for the entire year. > Ihave found great suport hear. always a caring ear and someone to vent to. > We all need to scream or cry sometimes and the people here are wonderful. > Sorry you have to deal with this disease but welcome to the group. > > -SC > > > _________________________________________________________________ > 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 12, 2002 Report Share Posted August 12, 2002 WELCOME to a great group. hope to see you again soon. LOVE & HUGS, grandmomBEV New to the group Hello all. I am a parent of a 13 year old girl with Cystic Fibrosis and Bilary cirrosis of the liver, although this is not a common form, I have been looking for other families with children that have liver disease with their illness as I have not been able to find much information on this pacific form of Cystiv fibrosis, all advice welcome. Thank you, earth_angel_1968 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2002 Report Share Posted August 13, 2002 Hi , Sorry you are here but you have found the right person in Andy. You do not need a doctor to follow Andy's protocol unless you need some of the prescription meds and in that case since you are up in Washington (Tacoma ?) I would just go see the doctor Andy works with. In the long run this would probably save you time and money ( wouldn't have to try and persuade a doctor that didn't know what he was doing). TK > Hello, > I can't tell you how much I appreciate just reading all of your messages. It has been very encouraging to know that I am not alone in this. > I'm 42 and two years ago was diagnosed with MS. Had all the classic symptoms, eye, numbness in legs and skin, no energy, lots of spots on my MRI's. Went on interferon for 1 and 1/2 years. That was a disaster. Have been on Ashton Embry's Best Bet Diet for 6 months and I almost have all my energy back! Digestive system is now all OK. Still have leg and arm numbness, especially in hot weather. > Recently went to a new doctor just to make sure that this diet wasn't screwing up something else in my body. She diagnosed mercury poisoning. After researching, it appears that all of my MS symptoms are the same as mercury poisoning. Was a dental assistant in high school and had last amalgam removed right after diagnosis. Went through one vitamin C drip and 3 Calcium EDTA IV's. The doctor had said the IV's should take an hour and a half so as not to overload liver and kidneys. The last one took only 50 minutes and I have been ill since: bad stomach cramps, all MS symptoms have resurfaced and my mind has not been right, even had a 2 hour crying spell which is not like me at all. > Was able to meet with Cutler and purchase his book. So I'm now in the process of trying to find a doctor who will follow his protocol with me. Have an appointment at a Tahoma Clinic in two weeks. > I would greatly appreciate any input you all might have on this. As I said earlier, I am new to all of this chelation/detox and would much rather hear from other's experience than a doctor's opinion. > Thank you, > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2002 Report Share Posted August 13, 2002 Hello , > I can't tell you how much I appreciate just reading all of your messages. It has been very encouraging to know that I am not alone in this. > I'm 42 and two years ago was diagnosed with MS. Had all the classic symptoms, eye, numbness in legs and skin, no energy, lots of spots on my MRI's. You might enjoy reading the info at this link: Multiple Sclerosis & mercury poisoning This is the text of a short speech about MS & merc poisoning. Includes great personal recovery and also denouncement of MS society for their denial of any connection between merc & MS http://medicaltruth.com/mercury/mercury.html The man who wrote this has a website too..... > Recently went to a new doctor just to make sure that this diet wasn't screwing up something else in my body. She diagnosed mercury poisoning. well, that is VERY NICE! > After researching, it appears that all of my MS symptoms are the same as mercury poisoning. yes, um, funny about that, huh. (Oh, I think you WILL like the essay/speech at the URL above.) > Was a dental assistant in high school and had last amalgam removed right after diagnosis. Went through one vitamin C drip and 3 Calcium EDTA IV's. The doctor had said the IV's should take an hour and a half so as not to overload liver and kidneys. The last one took only 50 minutes and I have been ill since: bad stomach cramps, all MS symptoms have resurfaced and my mind has not been right, even had a 2 hour crying spell which is not like me at all. I don't know what the problem effects are about sounds very yucky EDTA is not a good chelator of mercury, but clearly SOMETHING is going on with these symptoms. > Was able to meet with Cutler and purchase his book. So I'm now in the process of trying to find a doctor who will follow his protocol with me. Have an appointment at a Tahoma Clinic in two weeks. You can read my very general ideas about doctor hunting, here: http://groups.yahoo.com/group/Autism-Mercury/files/HOW_TO_find_doctor If you have other ideas to suggest, please let me know. This info feels more like a " rough draft " to me. I keep asking for more ideas, but so far not much response..... > I would greatly appreciate any input you all might have on this. As I said earlier, I am new to all of this chelation/detox and would much rather hear from other's experience than a doctor's opinion. well, keep asking questions. best wishes, Moria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2002 Report Share Posted August 19, 2002 , no you are not a freak. I miss pizza too! You have to stop even the rare drink. Any alcoholl at all will set the pancreas off. I'm missing my gallbladder too, though they tried to reconstruct my ducts instead of having the sphincter of Oddi cut since my problem is due to pancreatic divisum (divided ducts) - it's a birth defect. I'm also on Reglan for my nausea and bowel motility. I eat a low fat to no fat diet - I usually stay at 6grams or less a meal. I also have daily pain that is controlled most of the time with pain meds. They have me on a long lasting one 3 times a day and a short acting one for breakthrough pain. Haven't been feeling too good today. You've found the right place. Welcome, feel free to vent, cry, complaint, laugh, etc. We'll be here to listen, give advice, etc. Kimber -- Kimber Vallejo, CA hominid2@... Southwest Representative Pancreatitis Association, International Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2004 Report Share Posted July 30, 2004 Hi Steve, I am also new to the group. Welcome. When I first discovered I was diabetic I used to have what you call brain fog. I couldn't figure out what was wrong with me but was in denial that it was anything serious. Now I have a 10 month old son so I wouldn't know whether my perpetual daze is from sleep deprivation or diabetes. Where on the South Coast are you from? My husband is from Bournemouth. We are in California now but lived in the UK for 5 years together. Take Care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2004 Report Share Posted July 30, 2004 HI STEVE, YOU WERE MENTIONING ABOUT THE BRAIN FOG. YES, THAT IS VERY COMMON. THEY ARE WORSE WHEN YOU ARE A TYPE 1 LIKE I AM. MY LEVELS RANGE FROM 160 FASTING TO 200 AFTER MEALS. I TAKE INSULIN TWO TIMES A DAY AND I WALK FOR EXERCISE. I WALK ABOUT 6 BLOCKS MORNING AND NIGHT GOING TO MY JOB. KEEP UP THE GOOD WORK ON YOU BG LEVELS, I WISH MINE WERE MORE IN CONTROL BUT I DO THE BEST I CAN. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2004 Report Share Posted July 30, 2004 Thanks for inviting me to your group, I am male 53years living in the south coast of the UK. Type 2 diagnosed 3 years my mother is diabetic seem to think its an inherited trait. I monitor my levels and stick to a good diet based around the GI index to balance intake. Exercise levels good occasional gym but much prefer long distance walking with my dogs to keep weight and bg levels under control. Check ups with doc show blood pressure good, cholesteral raised, good control over bg levels. One problem I seem to get two or three times a week is a brain fog, I go all weak and find it very difficult to do any thing but sit and wait for it to pass, it never happens when exercising quite the reverse strikes when I am relaxed, I have had tests but nothing has been found bg levels not unduly low when these occurr. I was wondering if any body in the group has the same symptoms or any idea. Another thing I suffer from bad cramps in my feet tried drinking diet tonic water and Calcium and Magnisium tablets to no avail. Its getting late so signing off now Steve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2004 Report Share Posted July 30, 2004 In a message dated 7/30/2004 2:56:28 PM Pacific Standard Time, s.lynn@... writes: .. One problem I seem to get two or three times a week is a brain fog, I go all weak and find it very difficult to do any thing but sit and wait for it to pass, it never happens when exercising quite the reverse strikes when I am relaxed, I have had tests but nothing has been found bg levels not unduly low when these occurr. Hi Steve, I have similar experiences on occasion. I test and have discovered my " low " point is around 100. As the diabetes progresses, I seem to inch higher in numbers. My body does not like 100. 105 no problem.... interesting. Nice to have you here, Hugs, Marilyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2004 Report Share Posted July 30, 2004 Hi Steve, I'm new to both the group and type 2 diabetes. I, too, get the brain fog. Im soooooooo glad that its not just me. My co-workers think something serious is wrong. There for a while I was beginning to believe them until my diabetic educator told me that it is quite common. I walk every day, twice a day. It helps me relieve stress and to keep bg's in control too. I cant help you with the foot cramps. I dont have those, but then again, I was diagnosed type 2 in april of this year. welcome to the group, steve!! Jolene Arkansas, USA > Thanks for inviting me to your group, I am male 53years living in the > south coast of the UK. Type 2 diagnosed 3 years my mother is diabetic > seem to think its an inherited trait. I monitor my levels and stick > to a good diet based around the GI index to balance intake. Exercise > levels good occasional gym but much prefer long distance walking with > my dogs to keep weight and bg levels under control. Check ups with > doc show blood pressure good, cholesteral raised, good control over > bg levels. One problem I seem to get two or three times a week is a > brain fog, I go all weak and find it very difficult to do any thing > but sit and wait for it to pass, it never happens when exercising > quite the reverse strikes when I am relaxed, I have had tests but > nothing has been found bg levels not unduly low when these occurr. I > was wondering if any body in the group has the same symptoms or any > idea. Another thing I suffer from bad cramps in my feet tried > drinking diet tonic water and Calcium and Magnisium tablets to no > avail. Its getting late so signing off now > > Steve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2004 Report Share Posted July 31, 2004 > Now I have a 10 month > old son so I wouldn't know whether my perpetual daze is from sleep > deprivation or diabetes. > A little of both ! Quote Link to comment Share on other sites More sharing options...
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