Guest guest Posted January 8, 2000 Report Share Posted January 8, 2000 Sandy, I'm still waiting to hear the definition of Dapsone Syndrome. I've never heard of this before. >>>>>>>>>>>>>>>>>>> I had the same problems with Metho. and Dapsone. The Metho made me sick, caught a virus while I was on it and had to be hospitalized, so I was taken off it. Next I took Dapsone, got sick again, went back into the hospital. This time I was in intensive care for 4 days. The doctors told me they thought part of it was Dapsone Syndrome. They took me off it. I'm just waiting to see what med they will try next. I will find out next week. Sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2000 Report Share Posted July 31, 2000 Carla, Zantac is not a pain medicine. The people here are all at various degrees of this disease with a range of pain meds. It really depends on what works for you. Diane ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2000 Report Share Posted September 11, 2000 In a message dated 9/11/00 6:50:02 AM Central Daylight Time, jang2@... writes: << Debbie, did you mean to say you take Lipitor for high cholesterol/triglycerides? That's the usual use. It could be only coincidental, but I had edema (swelling) of ankles & feet with intense knee & ankle pain, chest pain, shorness of breath after my dose of Lipitor was increased from 10mg to 20mg. These symptoms cleared several weeks after stopping the Lipitor. jang >> yes jang - and lopid also - both meds to get it down. (triglcerides) the endo doc put me on both earlier this year when i was in the hospital. they are having to check my liver w/blood tests every month to make sure i am ok. i hope today my family dr. will change it so that i am just on lopid or try another medication. i also take meds for high blood pressure. debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2000 Report Share Posted September 11, 2000 In a message dated 09/11/2000 7:50:05 AM Eastern Daylight Time, jang2@... writes: << had edema (swelling) of ankles & feet with intense knee & ankle pain, chest pain, shorness of breath after my dose of Lipitor was increased from 10mg to 20mg. These symptoms cleared several weeks after stopping the Lipitor. >> me too! Quitting that stuff was the best thing I could have done. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2000 Report Share Posted September 11, 2000 -- >i've had problems lately with pain in my knees and my hands have been going numb. i have an apptmt tomorrow w/ family dr. and will be going over a bunch of questions that i have with him. several people have told me that lipitor (which i take for high blood pressure) can affect joint pain. debbie Debbie, did you mean to say you take Lipitor for high cholesterol/triglycerides? That's the usual use. It could be only coincidental, but I had edema (swelling) of ankles & feet with intense knee & ankle pain, chest pain, shorness of breath after my dose of Lipitor was increased from 10mg to 20mg. These symptoms cleared several weeks after stopping the Lipitor. jang --== Sent via Deja.com http://www.deja.com/ ==-- Before you buy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2000 Report Share Posted September 11, 2000 In a message dated 9/11/00 7:50:19 AM Eastern Daylight Time, jang2@... writes: << and my hands have been going numb. >> Hi Debbie, I have numb feet and hands also but I am not on Lipitor. I have an appointment with a neurologist Thursday for the numbness. I spoke with a women who had pancreatitis and she said she had the same symptoms and went to a neurologist. The neurologist said that she was suffering from malnutrition and he is giving her vitamin B injections to build up her body. He told her that it would take 6 months to build her up. I will let you know what my doctor has to say about my numb feet and hands. We can compare diagnosis. Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2000 Report Share Posted December 28, 2000 Deborah, hi! Ur neuro prescribed all that????? or are people not communicating ?? U sure u aren't getting some symptoms from taking some of the drugs?? I don't know that is why I am asking. 1.How long u been on Mirapex?>?? 2.How long did it take before u reached 4.5 a day dose of mirapex?? 3. Retention problems? 4. when did the visual problem start and whatt kind of vision problems do u have? 5 And what is the chronological order that u started ur meds?? Like which one came first and what year did u start the drug?? 6.What symptoms are each one of ur drugs for? I know the compton, sinemet, and mirapex. 7.What is ur med schedule? I am in shock. i hope the pain diminishes,so u can feel better. When I am in really yucko pain. I cry downstairs, stop, then put on a certain show and my computer. My computer is a laptop on a desk that the legs roll under my recliner. My husband is programming and setting up music so I can tell my computer what I want to hear. Unfortunately, he hasn't yet conquered the volume control:) If the certain tv show isn't on, then I watch the comedy station (SNL/ Steve ), old cartoons (jetsons, Flintstones), Twilight Zone, history channel, E -1 (high fashions), home repair,listen to Madonna or Shanana Twain. If it is around 6 or 7 am I call my girlfriend in Boston. Our husbands are use to it loll. Sometimes we talk on the phone, on ICQ and I-Visit all at the same time:) The phone is for trying to get the Ivisit program working with the camera and for barb to talk 'cause she has a devil of a time typing. The ICQ is for when my voice wears out and I type:) loll nancy m. happy2be@... wrote: > > Thanks for the response from all. I have been down for the past few > days, not able to walk or get words from my brain to my mouth. It is > so frustrating. I am on 1000 IU vita. E per day, 1 multivitamin, 20 > MG Zocor, 4.5 MG Mirapex, 40 MG Elderpryl, 1000 MG Compton, 5 50/100 > Sinamet Cr, 10 MG Sonata, 20 MG amitryptoline, 25 MG Vioxx per day. I > am also in pain all of the time. It is mostly my left leg. I have > off peak dyskonisia's, visual disturbances, and terrible speech > problems. I pray daily for the strenght to stay positive about it > all and to find good in everything. If I could just stay above the > pain....wishful thinking. Anyway, thank you for the response. > Deborah > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2000 Report Share Posted December 28, 2000 Hi , Yep, the neurologist prescribed all of the meds. He had me on 9 mg of mirapex per day but reduced it to 4.5 per day in September. I am sure that some of the symptoms are from the meds but are at a loss as to which is causing what. I have experienced minimal relief from the meds, usually lasting up to 2 months, before having to increase them in order to move. I have been on mirapex since February 2000. I am not having any retention problems. My visual problems started about a year ago. I have trouble focusing on things or tunnel vision. Order of meds? Let's see, Zocor multivitamin Viamin E Elderpryl Sinamet Mirapex Compton Sonata Amytriptoline I start my meds at 6:30 in the morning. 400 Mg Vitamin E 1.5 Mirapex 50/200 Sinamet Cr 200 Mg Compton Multivitamin 20 Mg Zocor 20 Mg Elderpryl 10:30 AM Sinamet Compton 12:30 200 Mg Vitamin E Elderpryl Mirapex 2:30 Sinamet Compton Vitamin E 6:30 Vitamin E Sinamet Compton Mirapex 8:30 Sonata Amytriptoline 10:30 Sinamet Compton Then I go to sleep (sometimes) and wake to start all over again Does anyone else take this much? I am still trying to figure out what is normal, so to speak, with this disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2000 Report Share Posted December 28, 2000 Hi , Yep, the neurologist prescribed all of the meds. He had me on 9 mg of mirapex per day but reduced it to 4.5 per day in September. I am sure that some of the symptoms are from the meds but are at a loss as to which is causing what. I have experienced minimal relief from the meds, usually lasting up to 2 months, before having to increase them in order to move. I have been on mirapex since February 2000. I am not having any retention problems. My visual problems started about a year ago. I have trouble focusing on things or tunnel vision. Order of meds? Let's see, Zocor multivitamin Viamin E Elderpryl Sinamet Mirapex Compton Sonata Amytriptoline I start my meds at 6:30 in the morning. 400 Mg Vitamin E 1.5 Mirapex 50/200 Sinamet Cr 200 Mg Compton Multivitamin 20 Mg Zocor 20 Mg Elderpryl 10:30 AM Sinamet Compton 12:30 200 Mg Vitamin E Elderpryl Mirapex 2:30 Sinamet Compton Vitamin E 6:30 Vitamin E Sinamet Compton Mirapex 8:30 Sonata Amytriptoline 10:30 Sinamet Compton Then I go to sleep (sometimes) and wake to start all over again Does anyone else take this much? I am still trying to figure out what is normal, so to speak, with this disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2000 Report Share Posted December 28, 2000 I never could spell. Comtan 200 Mg 5 times daily. Amitriptyline 25 Mg, before bed each night Yes, it is Eldepryl 5 Mg twice daily I know the side effects of the meds can cause some of the symptoms that I have but without them, I can't walk or talk and the pain is terrible. My neurologist has taken me off of the meds to see how I would respond and then after three days put me back on. I with I knew what to do. I was unable to find a doctor locally that had ever treated anyone my age with this. My primary neurologist is at Baylor Medical School in Houston. As of my last visit, November 28, 2000, he feels that I am doing much better. For what that is worth. What meds do most people take? Deborah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2000 Report Share Posted December 30, 2000 Deborah, I wonder why your doctor keeps you on Vioxx if you are still in pain? Isn't Vioxx esentially a pain reliever? BArb Pond Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2003 Report Share Posted July 18, 2003 Sorry, Quint......I have never hearf of Cabatrol..........glad it is working for you tho. Hugs, Darlene > Hi everyone my neuro has me on a seizure med called Cabatrol. > it works great for me. It is also said to work well for > trigeminal neuraligia. Has anyone heard about this med ? > Quint > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > Live Group Chat:- > Mondays & Fridays 10pm EST USA > http://www.elderwyn.com/neurosarcoidosis/chat.php > > Message Archives and Digest Attachment Pictures:- > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > Members Database:- > Listings of locations, phone numbers, and instant messengers. > http://groups.yahoo.com/group/Neurosarcoidosis/database > > Bookmarks:- > Add a website URL you have found useful. > http://groups.yahoo.com/group/Neurosarcoidosis/links > > Personal Complaints or problems:- > Please email the moderators > mailto:Neurosarcoidosis-owner > > Subscription Details:- > 1) Individual email - means that every email sent to the list you receive. > 2) Daily Digest - sends you 25 messages in one single email for you to > browse. This is an excellent option if you receive alot of email. > 3) Web only/No mail - means that you can pop into eGroups at your > convenience and receive no email. > To modify your subscription settings please visit:- > http://groups.yahoo.com/group/Neurosarcoidosis/join > > To subscribe email neurosarcoidosis-subscribe > To unsubscribe email neurosarcoidosis-unsubscribe > > The moderators will not be doing it for you! > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > Come stand by my side where I am going, > Take my hand if I should stumble and fall, > It's the strength and love that you share, > That gives me what I need most of all. > - Hoyt Axton > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2003 Report Share Posted July 19, 2003 Aisha dear thanks for the information Quint Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2003 Report Share Posted July 19, 2003 Yes I have taken it. I was allergic to it. I broke out in a rash. meds Hi everyone my neuro has me on a seizure med called Cabatrol.it works great for me. It is also said to work well fortrigeminal neuraligia. Has anyone heard about this med ?Quint Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.