Guest guest Posted February 27, 2005 Report Share Posted February 27, 2005 Hello Jan, I'm interested in hearing more about this drug from you please. I live in France and this is the first time I'm hearing of this. Neither of my former neurologists suggested this to combat my fatigue. From what I've read it tends to reduce symptoms. It blocks the Potassium channels and improves conduction of electrical impulses through Nerves whose protective Myelin sheath has been damaged or destroyed by MS. It also seems to improve the tingling, burning, skin crawling, itching, partial numbness and a variety of neuropathic pains associated with MS. It is still an experimental drug. Do you have any side effects from this drug? They mention dizziness, Numbness and Tingling, and Instability while walking. Can you tell us more? Many thanks. Kind regards Joanne > The Europeans have a drug that isroutiney give called $-AP (aminpyridine). > It is great for the fatigue, etc. I have been on it sine 1994. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2005 Report Share Posted February 27, 2005 Hi Joanne, Just read your message and thought I would share my experience with 4- AP(4 aminopyridine)too. This drug has been around for a while. It was originally used for spinal cord injuries. I've been taking 5mg 3 times a day for almost a year. It does wonders for me. It is a compounded drug and is very inexpensive here in Houston, Texas. My cost is $25.00 USD for a 1 month supply. My neuro advised me that there is a maximum dosage of 35 mg per day. At 35 mg or over this medicine will cause seizures. I had tried Provigil which seems to be a popular drug prescribed to MS patients for fatigue. It definitely kept my mind alert but did nothing for my physical fatigue and weakness. 4AP started working 30 minutes after I took it. It decreases my spasticity, reduces my weakness and alleviates my fatigue. I try to take all 3 doses before 7:00 p.m. as this can keep me awake if I take it later than that. I highly recommend trying it. Let me know if you have any other questions : ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2005 Report Share Posted February 27, 2005 Hello Joanne, I am assuming you mean the 4-AP (4-aminopyridine). Dr. Jeutersonke, D.O., in Colorado Springs, Colorado, prescribed it for me in 1994. (I live in Kansas now, but we keep in touch.) It is copnsidred an 'orphan' drug in the U.S., and probably will never be approved for MS in the States. Dr. J probably save the quality of my life with it. He told me that it is given for MS in Europe. I had an M.D. from Hungary, Dr. Zelenak, who also prescribed it for me here in Kansas, and confirmed that it is a routine drug for MS in Europe. What it does for me is to take away the terrible fatigue, and probably the mental fogginess and stiffness. I feel 'normal'! Then it wears off and the symtoms come on me like water thrown on the Wicked Ole Witch of the West who melted away in the Wizard of Oz movie. It has to be compounded by a pharmacist who is licensed to do that (make his own). It can be made to be fast on the uptake and slow in the downside, or vice versa. It comes in 20 mg, and instructions say to take one every 12 hours 2 times daily. I cannot get it to last 12 hours, so I space it about every 8-9 hours. When it wears off in the night, I am asleep anyway. The side affects are that if you overdose, you can have an epileptic seizure, first of all. I have taken a third one on rare occasions, without incident (overlapped dosage), but that is not recommended. Another side affect is that is can damage the iver in some cases. Dr. J. always tested my liver fiunction (blood test) every three months. Since moving to Kansas, I only check it about every six months or so, My liver is doing fine. I can give you Dr. Jeutersonke's email address and he will answer you. (It may be a couple of days, but he is very good to respond. He knows me, so you can ue my name to get a good seat...) Here is some information on him: he has a website and an email address for patients. He is an extremely intelligent man. (Name pron. jew-ter-son-key) Clinic and mailing address: Dr. J. Juetersonke 3525 American Drive Colorado Springs, Colorado 80917 Telephone: (719) 597-6075 FAX: (719) 573-6529 E-mail: drj@... J. Juetersonke, D.O.(Dr. " J " ) is a native of Illinois. He studied medicine at Midwestern University, Chicago College of Osteopathic Medicine. Board certified in Family Practice, Dr. J has been actively treating his patients for 20 years. Dr. J also has a distinguished academic career outside his clinical practice. For five years he served on the full time medical faculty of The University of North Texas Health Science Center where he was an Assistant Professor in the Department of Preventive Medicine. He continues to hold a faculty appointment as Clinical Assistant Professor at The University of North Texas Health Science Center in Fort Worth. Medical students and residents are frequently invited to Dr. J's busy Colorado clinic, where he shares his experience in the clinical aspects of preventive medicine. Dr. J also has a busy travel schedule that takes him to medical conferences where he lectures medical professionals on health topics of particular interest to him, specifically Syndrome X (coronary artery disease, hypertension, adult onset diabetes, obesity and stroke. Since adding External CounterPulsation (ECP) therapy the past two years to his practice and authoring the first book of its kind on the subject ( " Passing on Bypass " -- add link), Dr. J's national notoriety has really picked up! This treatment, (Learn More -- add link) which he calls LifePulse®, allows patients who suffer from chronic and debilitating angina caused by coronary artery disease to restore some semblance of an active lifestyle without drugs or additional surgery. Needless to say, the media around the country have latched on to Dr J's book and the story it tells of people who otherwise have run out options to treat their angina. Here is a chronology of Dr J's media appearances: Recently, a Colorado Springs' lifestyle magazine covered also his story (Learn More --add link to download a pdf of article). Dr. J is a member of the American Osteopathic Association, Colorado Society of Osteopathic Medicine, Colorado Springs Osteopathic Medical Foundation, El Paso County Medical Society, member of the board of the Foundation for Environmental Research in Colorado, and a former senior editor for AAEM Medical Digest. Dr. J resides in Colorado Springs with his wife Saundra (who also works in the family practice as an attending nurse) and their daughter Lora, who attends high school. When I went to him in the early 90s, he only treated chronically-ill patients. He always has kept up with the latest thing in medicine and diseases, and he is excellent in that he educates his patients. He is probably one of the most excellent physicians I have ever known. I hope this helps. Oh, one more thing: Evn though I am on the LDN, I still take the 4-AP. I can tell a big difference in the fatigue, and still need the 4-AP, but I can go longer without having to take my second 4-AP. One last thing I can say about Dr. Jeutersonke is that he is extremely trustworthy. He puts the patient's well being first, and he does not have an ego like so many God-comlexed doctors we know. If he says something won't work, he is the final authority, in my book. I find that he stays ahead of me when I am looking for other treatments. Jan betrue@... , Kansas (In extreme south-central Kansas) Juetersonke, DO Colorado Springs, Colorado Dr. Juetersonke (jew-ter-son-key) is in private practice in Colorado Springs, Colorado. He is author of the book " Passing on Bypass Using External Counter Pulsation: A FDA Cleared Alternative, to Treat Heart Disease Without Surgery or Drugs " . He is currently Clinical Assistant Professor, University of North Texas Health Science Center and Adjunct Associate Profe Juetersonke, DO Colorado Springs, Colorado Dr. Juetersonke (jew-ter-son-key) is in private practice in Colorado Springs, Colorado. He is author of the book " Passing on Bypass Using External Counter Pulsation: A FDA Cleared Alternative, to Treat Heart Disease Without Surgery or Drugs " . He is currently Clinical Assistant Professor, University of North Texas Health Science Center and Adjunct Associate Professor, Midwestern University College of Health Sciences, Downers Grove IL ssor, Midwestern University College of Health Sciences, Downers Grove IL [low dose naltrexone] Re: Off Topic....4-AminoPyridine > > > Hello Jan, > > I'm interested in hearing more about this drug from you please. I > live in France and this is the first time I'm hearing of this. > Neither of my former neurologists suggested this to combat my > fatigue. From what I've read it tends to reduce symptoms. It > blocks the Potassium channels and improves conduction of electrical > impulses through Nerves whose protective Myelin sheath has been > damaged or destroyed by MS. It also seems to improve the tingling, > burning, skin crawling, itching, partial numbness and a variety of > neuropathic pains associated with MS. It is still an experimental > drug. Do you have any side effects from this drug? They mention > dizziness, Numbness and Tingling, and Instability while walking. > Can you tell us more? Many thanks. > > Kind regards > Joanne > > >> The Europeans have a drug that isroutiney give called $-AP > (aminpyridine). >> It is great for the fatigue, etc. I have been on it sine 1994. > >> >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2005 Report Share Posted February 27, 2005 and Jan, Thank you for responding so rapidly and sharing your information with me. I am in the middle of moving house and I'm really a bunch of nerves because I do not have the energy or force to do the simplest things. I shall discuss this med with my doctor. Jan thanks for the details of Dr. J. Kind regards, Joanne > Hello Joanne, > > I am assuming you mean the 4-AP (4-aminopyridine). Dr. Jeutersonke, > D.O., in Colorado Springs, Colorado, prescribed it for me in 1994. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2005 Report Share Posted February 28, 2005 Alethe, I don't think so. Sorry! > Hi , > > Do you think 4-AP(4 aminopyridine) is helpful for the symptoms of numbness > and tingling in many areas of the body? > > Thanks > Aletha > > > [low dose naltrexone] Re: Off Topic....4-AminoPyridine > > > > > > > > Hi Joanne, > > > > Just read your message and thought I would share my experience with 4- > > AP(4 aminopyridine)too. This drug has been around for a while. It > > was originally used for spinal cord injuries. > > > > I've been taking 5mg 3 times a day for almost a year. It does > > wonders for me. It is a compounded drug and is very inexpensive here > > in Houston, Texas. My cost is $25.00 USD for a 1 month supply. My > > neuro advised me that there is a maximum dosage of 35 mg per day. At > > 35 mg or over this medicine will cause seizures. I had tried > > Provigil which seems to be a popular drug prescribed to MS patients > > for fatigue. It definitely kept my mind alert but did nothing for my > > physical fatigue and weakness. 4AP started working 30 minutes after > > I took it. It decreases my spasticity, reduces my weakness and > > alleviates my fatigue. I try to take all 3 doses before 7:00 p.m. as > > this can keep me awake if I take it later than that. I highly > > recommend trying it. > > > > Let me know if you have any other questions : ) > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2005 Report Share Posted February 28, 2005 I appriciate your input. Aletha [low dose naltrexone] Re: Off Topic....4-AminoPyridine >> >> >> > >> > >> > Hi Joanne, >> > >> > Just read your message and thought I would share my experience > with 4- >> > AP(4 aminopyridine)too. This drug has been around for a while. > It >> > was originally used for spinal cord injuries. >> > >> > I've been taking 5mg 3 times a day for almost a year. It does >> > wonders for me. It is a compounded drug and is very inexpensive > here >> > in Houston, Texas. My cost is $25.00 USD for a 1 month supply. > My >> > neuro advised me that there is a maximum dosage of 35 mg per > day. At >> > 35 mg or over this medicine will cause seizures. I had tried >> > Provigil which seems to be a popular drug prescribed to MS > patients >> > for fatigue. It definitely kept my mind alert but did nothing > for my >> > physical fatigue and weakness. 4AP started working 30 minutes > after >> > I took it. It decreases my spasticity, reduces my weakness and >> > alleviates my fatigue. I try to take all 3 doses before 7:00 > p.m. as >> > this can keep me awake if I take it later than that. I highly >> > recommend trying it. >> > >> > Let me know if you have any other questions : ) >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2005 Report Share Posted February 28, 2005 This is Jan - the one taking 4-AP since 1994. My experience is that it allows my right hand to have more dexterity when I am taking it, but only a little. I can tell when the medicine wears off because I get stiffer. I haven't had any problems with tinging, so mayb it does help there - I don't think so though. The dr. did not giv it to me for that reason - it was for the fatigue. [low dose naltrexone] Re: Off Topic....4-AminoPyridine >>> >>> >>> > >>> > >>> > Hi Joanne, >>> > >>> > Just read your message and thought I would share my experience >> with 4- >>> > AP(4 aminopyridine)too. This drug has been around for a while. >> It >>> > was originally used for spinal cord injuries. >>> > >>> > I've been taking 5mg 3 times a day for almost a year. It does >>> > wonders for me. It is a compounded drug and is very inexpensive >> here >>> > in Houston, Texas. My cost is $25.00 USD for a 1 month supply. >> My >>> > neuro advised me that there is a maximum dosage of 35 mg per >> day. At >>> > 35 mg or over this medicine will cause seizures. I had tried >>> > Provigil which seems to be a popular drug prescribed to MS >> patients >>> > for fatigue. It definitely kept my mind alert but did nothing >> for my >>> > physical fatigue and weakness. 4AP started working 30 minutes >> after >>> > I took it. It decreases my spasticity, reduces my weakness and >>> > alleviates my fatigue. I try to take all 3 doses before 7:00 >> p.m. as >>> > this can keep me awake if I take it later than that. I highly >>> > recommend trying it. >>> > >>> > Let me know if you have any other questions : ) >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2005 Report Share Posted March 1, 2005 The wide range of effectiveness reported by those who answered this 4ap thread just highlights the vairability of MS. It is truly amazing, and I think it is a real stroke of luck that LDN has managed to hit a relatively high rate of response for MS. I tried 4ap for 3 months before I found out about LDN, only had minor increase in mobility. After LDN I was doing so well I quite the 4ap, and all other drugs too. SammyJo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2005 Report Share Posted March 1, 2005 Thanks for that info Sammy Jo - My LDN is on order, hope to start next Monday, and am thrilled at the prospect of ditching my other 5 precriptions! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2005 Report Share Posted March 1, 2005 Sammy Jo - Glad to hear that you were able to quit the 4-AP. 100 of those ittle puppies costs me $86. I want to be able to pitch them too. Can't just yet. I have not had enough change yet to dump m other RXs. Jan [low dose naltrexone] Re: Off Topic....4-AminoPyridine > > > The wide range of effectiveness reported by those who answered this > 4ap thread just highlights the vairability of MS. It is truly > amazing, and I think it is a real stroke of luck that LDN has managed > to hit a relatively high rate of response for MS. > > I tried 4ap for 3 months before I found out about LDN, only had minor > increase in mobility. After LDN I was doing so well I quite the 4ap, > and all other drugs too. > SammyJo > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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