Submitted by anna440 (not verified) on Wed, 2008-07-30 17:56.
Hello,
I have been taking Copaxone for 8 years, gabapentin for about 6 years for neuropathy, and tylenol 3 for pain. Provigil as well with good results.
I have tried homeopathic remedies for the leg pain that is difficult to describe to most. Nothing did work, hence the addition of tylenol to my list of meds.
Submitted by Anonymous (not verified) on Thu, 2008-08-07 18:35.
I think things might have worked better if the type of MS I have wasn't PPMS. All I can say is I am trying and yes I m talking a multitude of dietary supplements.
I take 10 drugs in addition to 8 vitamins/supplements. It is the kitchen sink approach, but more effective than any of the drugs or supplements, is exercise, physical therapy, long walks, and pilates. Remember, "Objects in motion, tend to stay in motion."
Graham(UK)
LDN and extra Vit D, when I remember!
My experience of Baclofen was not good, be careful folks - makes muscles, especially legs even weaker. I suspect there are people in wheelchairs solely because of too much Baclofen - Dr's, Neuro's should warn people of this side effect.
I am currently on the Tysabri regime which is working "great". I also take Effoxor and Provigil (sometimes). It sucks taking anything, but what else can you do?
I am taking Tysabri, Provigil and Effexor. I am definitely happy with the Tysabri, no new symptoms, just the same old ones (depression, cognitive impairment those little bothersome things).
Submitted by pjrsthegreat on Fri, 2008-08-01 06:43.
I am a Registered Nurse who was diagnosed in 1976. I worked full time until 1991, in a Rascal cart the last 3 years (after a fall at work). I was denied the right to work in a wheelchair until my fall.
I checked into a nursing home in 2002 due to not being able to care for myself at home well enough. That means being "broke", which I HATE! The generousity of family and good friends has enabled me to have a phone and be online, and to tolerate being here some better. I am at present in a room alone, which helps! I can watch tv and listen to music without disturbing others ....... still homesick and wishin' I was fishin'! I was an athlete in school through college, and raised horses, and enjoyed water sports. BIG CHANGE - I am not able to support my weight on my legs, so am not able to get from bed to wheelchair, have to be lifted by two people. I am not on any medications for my MS, and have never been. I am hopeful of a cure, so many smart and caring people are working so hard! Thank you, and may God bless you all for every kind act and thought! PJ
Submitted by Marla Eglowstein, MD (not verified) on Fri, 2008-08-01 09:13.
Hi, PJ, I'm so sorry to hear about your difficulties. I was dx'ed four years ago and within less than a year, had to leave my OB practice. My employer (hospital) would not agree to my wishes on a part-time contract and then eliminated my position. I really would not have been able to fulfill my position anyway, but it was heartbreaking to have so little support--no discussion about what we could do to make it easier, etc.
I hope your family will continue to step up to the plate and help you as much as they can.
I am also a reguistered nurse but have been on treatment for the last 12 yrs and doing so well. I believe that we have to try to stay well and the only way we can do that is to be on treatment. I am still practing nursing but only part time as I am retired now. I am 65 and have had ms for over 30 yrs. I have lost half of one eye and a third of the other eye, chronic double vision, both feet are numb, have the bladder problems and fatique problems and take meds for them. I am on Copaxone and have been doing much better since I stopped the interferons which was 4 yrs ago. I do believe there will be a cure but also believe that you need to be on treatment to stop some of the excerbations from making us worse until there is a cure. It is no good to think of what we used to do. We need to think of all the things we can do and to try to improve what we can't. I wish for you the best but do think you should be on treatment.
Good luck to you,
Marie
I always have wondered why so many of us healthcare workers have MS, but it may or may not be statistically relevant. I am a former dentist (periodontist) who worked in hospitals. Dx 1986, stopped clinical practice in 1990 due to loss of hand control, now in a wheelchair fulltime. Progressive MS... no remissions.
Medicines: amantadine, LDN, DHEA, provigil, vit D, calcium, etc.
I am so sorry to hear about you being in a nursing home. I know about a drug that is in stage 2 clinical trials. It is for the difficult to treat MS patient. It sounds very promising, so stay as healthy as you can. I hope the FDA will "fast track" it! I have read that many nurses have MS. I was a teacher, and I personally know quite a few teachers who have MS, too.
I take dexamethasone-40 mg.,4 consecutive days a month; Tizanidine-4mg., 4 x daily; 4-aminopyridine-17.5 mg., 3 x daily; Amantadine- 100mg., 2 x daily; Neurontin-600 mg., 3 x daily; Methadone-.5 mg., 3 x daily; Sanctura- 20 mg., 2 x daily; Flomax-.4 mg., 1 daily; Lipitor-40 mg., 1 daily; Evista-60 mg., 1 daily; and several vitamins. Yes, I know it is too many drugs, but I can't imagine NOT taking them, as they all help a symptom that plagues me. I am able to do stretching exercises and use a Cardio Crusier that works my legs and arms.
Without a cure, I will be in a nursing home in a few years. Now, my retired husband and I live with my daughter and her family. I have 4 very supportive children and 6 grandchildren who live nearby, and I know I am very fortunate. My family is awesome, but so far I am able to transfer to my wheelchair, and I can get into the car with some assistance. Later, when I am much worse, I will go to a nursing home as a medicade patient. My husband is 66 yrs., and being my caregiver is getting harder and harder. My children are very helpful, but they all have a family and do not realize how MUCH care I will need in a few years.
I spend a lot of time on the computer, and I'd love to converse with you through e-mail. Think happy thoughts, never give up, and have a good day!
Submitted by Anonymous (not verified) on Fri, 2008-08-01 08:56.
I am SPMS and have only had ACTH for symptoms. I have not taken any more since 1986 because the last time I was on this therapy it did not help and the side effects were such that it was not worth it to me.
I take oxybutynin for bladder issues and that is all.
Submitted by gibbledygook (not verified) on Fri, 2008-08-01 09:40.
I take only herbs for my MS and I really think that after 5 months on these that I'm doing considerably better than I was on an experimental antibiotic regimen. Particularly effective is capsaicin and curcumin, followed by scutelleraria baicalensis. Other herbs are in smaller doses but include rehmannia and salvia miltiorrhiza. Check them out on pubmed. They are cool herbs.
Submitted by Jeannine (not verified) on Fri, 2008-08-01 10:22.
I take gabapentin for my muscle spasms (4,000 mgs), monthly infusions of IVIG and a low dose of macrodatin to ward off infection for a very spastic bladder. I hate taking meds and this is a very big move for me. I havent had any new symptoms ,I have enough already, but I can feel myself slowly progressing.
I take Effexor XR for my depression and Hydrocodone 5/500 for my neck/shoulder pain. I did take Copaxone, but had 2 allergic reactions, to it, so have stopped taking it with the approval of my Neuro. I'm hoping that one of the new "pill" form medications will soon be effective for all of us, to stop the progression.
Submitted by Rose (not verified) on Fri, 2008-08-01 21:54.
Hi Kathy,
I am starting the new pill medication in about a week, I have been selected as part of a clinical trial for the new pill, it is a nine month trial and it has not been used yet on anyone for treatment of MS. I'm a little nervous but to me it sounds a bit like Tysabri in pill form. If it helps us to get closer to a cure or even helps with flare ups, it is well worth the risk to me. Besides, I will get the medication free of charge. I could not tolerate any of the crab drugs so they said I am a good candidate for this drug.
Wish me luck and I hope I can help us all out by doing this.
God Bless you,
Rose
Good Luck - tenfold! I tried to participate in the RTL1000 study, but I did not have the necessary gene required for the study. The odd thing was, that I received the paperwork (that I had filled out), earlier to participate at OHSU - Oregon Health and Sciences University. I called them to see if I possible (could) participate (again) and they haven't called me back, so I'll try again tomorrow.
I could not tolerate Copaxone (had 2 allergic reactions) and I should not be taking one of the 'crabs' due to my migraines. So, the pill form might be a good option for me as well!
Pill form for ALL of us would be great! I, too, like taking part in research to benefit all!
Submitted by Cathy Manners (not verified) on Sat, 2008-08-02 06:17.
My M.S. began as R-R in c. 1985 but progressed to SP-MS by c. 1998.
I've taken most of the ABC drugs over the years, other than Rebif because the interferons (A or B) didn't really work for me. I've also took Mitoxantrone in smaller than allowed doses over several years.
I take several handfuls of pills daily: Minocycline, Memantine, Efexor, Zocor, Baclofen, LDN, Prazosin (bladder problems), Coloxyl with Senna (constipation), Fish Oil, Glucosamine, Neprinol (dissolves flbrin plaques), Syntol (microflora), Vitamin D.
I'm trying to access one of the M.S. Vaccines (i.e. NeuroVax) but am having difficulty obtaining any of them in Australia.
Submitted by Cheryl Rosen (not verified) on Sat, 2008-08-02 09:06.
I use Propranolol for the tremors. Baclofen for the spasticity, especially in my rib cage area. Without it, I have troubles talking and breathing. High doses of Vitamin D weekly, which the blood work has confirmed has brought my levels back to normal. Neurontin for the numbness and tingling in my feet. Trileptal for the shooting nerve sensations into my face (neuropathy).
Topamax for the migraines. GABA amino enzymes, a neuro transmitter which actually works on preventing my migraines better than the Topamax. Zomig for the migraines AFTER I get one. Ovcon-35 birth control pills have been used to stop my menstral cycle in order to permanently stop my hormonal migraines (I am near completing perimenopause anyway).
Due to being able to show symptoms going back into the late 70's, and having a diagnosis of Chronic Fatigue in the late '80s and Fibroyalgia in 2000 - and being diagnosed with MS in 2003 - the doctor assumes that I have had MS all these years. I am still mostly functioning with symptomatic medications, except mostly the extreme fatigue which keeps me from being sedentary for working at a computer (I am a graphic designer by education and trade). The doctor and I have mutually agreed that I can wait until a better drug comes out on the market to take versus the current batch of ABC-R drugs. My lesions are minimal and stay that way on my yearly MRI, and are not in any areas of great concern. The flare-ups are manageable.
I only counted Copaxone & ginko biloba (for fatigue) as my 2 daily meds... but I forgot about Gabapentin (which I take occasionally when leg spasms make sleeping hard)... and all those vitamin/mineral pills I take without thinking about them: B, C, D, E, Calcium, multi-V...
I'm doing pretty well, if I budget my energy properly. 20 years post-dx, I use a cane... not too bad. But I envy people who have family to look after them - my husband walked out when I started using a cane.
Come to my fundraiser for the Accelerated Cure Project! Sing to Cure MS 2008 - October 26 in Arlington, MA. See singtocurems.org for details!
Submitted by Anonymous (not verified) on Fri, 2008-08-08 10:59.
I just recently stopped 3 other meds I have been taking. Sp, instead of 6-10, I would be in the > 10 category. I take 2 drugs for fatigue and 2 for spacticity. Without these medications, I would not be able to function at all. I am on Copaxone. Neither my neurologist or I know if it working, but I don't want to take the chance that it is not.
Submitted by Deb Richards on Mon, 2008-08-11 13:17.
This was a hard question to answer; I take homeopathic remedies, the number of which change, and supplements. I have never taken any of the standard drugs for MS having chosen 5 Element Acupuncture and other alternative treatments after my diagnosis in 1995. All was going well until what I thought was going to be a routine MRI in 2006 showed my first significant increase in lesions as well as the size of my existing lesions growing. Soon after is when I started to treat with homeopathy. I think it is helping and it is hard to say for sure. I believe in the homeopathic theory of treatment, that being looking beyond the symptoms to the causes and treating those. I do however have an appointment in 2 days with a new neurologist who is open to prescribing LDN. Any comments from those of you taking LDN would be greatly appreciated. Please send to me directly at debjrichards@gmail.com.
Blessings to us all as we live our lives with the constant companion named MS.
I take Baclofen and
I take Baclofen and gabapentin to help control symptoms, Copaxone and LDN to slow progression. Wish any of them would work better.
Hello, I have been taking
Hello,
I have been taking Copaxone for 8 years, gabapentin for about 6 years for neuropathy, and tylenol 3 for pain. Provigil as well with good results.
I have tried homeopathic remedies for the leg pain that is difficult to describe to most. Nothing did work, hence the addition of tylenol to my list of meds.
I think things might have
I think things might have worked better if the type of MS I have wasn't PPMS. All I can say is I am trying and yes I m talking a multitude of dietary supplements.
I take 10 drugs in addition
I take 10 drugs in addition to 8 vitamins/supplements. It is the kitchen sink approach, but more effective than any of the drugs or supplements, is exercise, physical therapy, long walks, and pilates. Remember, "Objects in motion, tend to stay in motion."
Take Copaxone and
Take Copaxone and minicycline.
Graham(UK) LDN and extra Vit
Graham(UK)
LDN and extra Vit D, when I remember!
My experience of Baclofen was not good, be careful folks - makes muscles, especially legs even weaker. I suspect there are people in wheelchairs solely because of too much Baclofen - Dr's, Neuro's should warn people of this side effect.
I am currently on the
I am currently on the Tysabri regime which is working "great". I also take Effoxor and Provigil (sometimes). It sucks taking anything, but what else can you do?
I am taking Tysabri,
I am taking Tysabri, Provigil and Effexor. I am definitely happy with the Tysabri, no new symptoms, just the same old ones (depression, cognitive impairment those little bothersome things).
I am a Registered Nurse who
I am a Registered Nurse who was diagnosed in 1976. I worked full time until 1991, in a Rascal cart the last 3 years (after a fall at work). I was denied the right to work in a wheelchair until my fall.
I checked into a nursing home in 2002 due to not being able to care for myself at home well enough. That means being "broke", which I HATE! The generousity of family and good friends has enabled me to have a phone and be online, and to tolerate being here some better. I am at present in a room alone, which helps! I can watch tv and listen to music without disturbing others ....... still homesick and wishin' I was fishin'! I was an athlete in school through college, and raised horses, and enjoyed water sports. BIG CHANGE - I am not able to support my weight on my legs, so am not able to get from bed to wheelchair, have to be lifted by two people. I am not on any medications for my MS, and have never been. I am hopeful of a cure, so many smart and caring people are working so hard! Thank you, and may God bless you all for every kind act and thought! PJ
Hi, PJ, I'm so sorry to
Hi, PJ, I'm so sorry to hear about your difficulties. I was dx'ed four years ago and within less than a year, had to leave my OB practice. My employer (hospital) would not agree to my wishes on a part-time contract and then eliminated my position. I really would not have been able to fulfill my position anyway, but it was heartbreaking to have so little support--no discussion about what we could do to make it easier, etc.
I hope your family will continue to step up to the plate and help you as much as they can.
Love and hugs,
Marla
I am also a reguistered
I am also a reguistered nurse but have been on treatment for the last 12 yrs and doing so well. I believe that we have to try to stay well and the only way we can do that is to be on treatment. I am still practing nursing but only part time as I am retired now. I am 65 and have had ms for over 30 yrs. I have lost half of one eye and a third of the other eye, chronic double vision, both feet are numb, have the bladder problems and fatique problems and take meds for them. I am on Copaxone and have been doing much better since I stopped the interferons which was 4 yrs ago. I do believe there will be a cure but also believe that you need to be on treatment to stop some of the excerbations from making us worse until there is a cure. It is no good to think of what we used to do. We need to think of all the things we can do and to try to improve what we can't. I wish for you the best but do think you should be on treatment.
Good luck to you,
Marie
PJ, I always have wondered
PJ,
I always have wondered why so many of us healthcare workers have MS, but it may or may not be statistically relevant. I am a former dentist (periodontist) who worked in hospitals. Dx 1986, stopped clinical practice in 1990 due to loss of hand control, now in a wheelchair fulltime. Progressive MS... no remissions.
Medicines: amantadine, LDN, DHEA, provigil, vit D, calcium, etc.
I wish you well.
- Charlie
Dear PJRSTHEGREAT, I am so
Dear PJRSTHEGREAT,
I am so sorry to hear about you being in a nursing home. I know about a drug that is in stage 2 clinical trials. It is for the difficult to treat MS patient. It sounds very promising, so stay as healthy as you can. I hope the FDA will "fast track" it! I have read that many nurses have MS. I was a teacher, and I personally know quite a few teachers who have MS, too.
I take dexamethasone-40 mg.,4 consecutive days a month; Tizanidine-4mg., 4 x daily; 4-aminopyridine-17.5 mg., 3 x daily; Amantadine- 100mg., 2 x daily; Neurontin-600 mg., 3 x daily; Methadone-.5 mg., 3 x daily; Sanctura- 20 mg., 2 x daily; Flomax-.4 mg., 1 daily; Lipitor-40 mg., 1 daily; Evista-60 mg., 1 daily; and several vitamins. Yes, I know it is too many drugs, but I can't imagine NOT taking them, as they all help a symptom that plagues me. I am able to do stretching exercises and use a Cardio Crusier that works my legs and arms.
Without a cure, I will be in a nursing home in a few years. Now, my retired husband and I live with my daughter and her family. I have 4 very supportive children and 6 grandchildren who live nearby, and I know I am very fortunate. My family is awesome, but so far I am able to transfer to my wheelchair, and I can get into the car with some assistance. Later, when I am much worse, I will go to a nursing home as a medicade patient. My husband is 66 yrs., and being my caregiver is getting harder and harder. My children are very helpful, but they all have a family and do not realize how MUCH care I will need in a few years.
I spend a lot of time on the computer, and I'd love to converse with you through e-mail. Think happy thoughts, never give up, and have a good day!
Sincerely,
sara530
I am SPMS and have only had
I am SPMS and have only had ACTH for symptoms. I have not taken any more since 1986 because the last time I was on this therapy it did not help and the side effects were such that it was not worth it to me.
I take oxybutynin for bladder issues and that is all.
I take only herbs for my MS
I take only herbs for my MS and I really think that after 5 months on these that I'm doing considerably better than I was on an experimental antibiotic regimen. Particularly effective is capsaicin and curcumin, followed by scutelleraria baicalensis. Other herbs are in smaller doses but include rehmannia and salvia miltiorrhiza. Check them out on pubmed. They are cool herbs.
I take gabapentin for my
I take gabapentin for my muscle spasms (4,000 mgs), monthly infusions of IVIG and a low dose of macrodatin to ward off infection for a very spastic bladder. I hate taking meds and this is a very big move for me. I havent had any new symptoms ,I have enough already, but I can feel myself slowly progressing.
I take Effexor XR for my
I take Effexor XR for my depression and Hydrocodone 5/500 for my neck/shoulder pain. I did take Copaxone, but had 2 allergic reactions, to it, so have stopped taking it with the approval of my Neuro. I'm hoping that one of the new "pill" form medications will soon be effective for all of us, to stop the progression.
Kathy Kay
Hi Kathy, I am starting the
Hi Kathy,
I am starting the new pill medication in about a week, I have been selected as part of a clinical trial for the new pill, it is a nine month trial and it has not been used yet on anyone for treatment of MS. I'm a little nervous but to me it sounds a bit like Tysabri in pill form. If it helps us to get closer to a cure or even helps with flare ups, it is well worth the risk to me. Besides, I will get the medication free of charge. I could not tolerate any of the crab drugs so they said I am a good candidate for this drug.
Wish me luck and I hope I can help us all out by doing this.
God Bless you,
Rose
Hi, Rose, Good Luck -
Hi, Rose,
Good Luck - tenfold! I tried to participate in the RTL1000 study, but I did not have the necessary gene required for the study. The odd thing was, that I received the paperwork (that I had filled out), earlier to participate at OHSU - Oregon Health and Sciences University. I called them to see if I possible (could) participate (again) and they haven't called me back, so I'll try again tomorrow.
I could not tolerate Copaxone (had 2 allergic reactions) and I should not be taking one of the 'crabs' due to my migraines. So, the pill form might be a good option for me as well!
Pill form for ALL of us would be great! I, too, like taking part in research to benefit all!
Please let me know how it goes, okay?
God Bless and Take Care,
Kathy
My M.S. began as R-R in c.
My M.S. began as R-R in c. 1985 but progressed to SP-MS by c. 1998.
I've taken most of the ABC drugs over the years, other than Rebif because the interferons (A or B) didn't really work for me. I've also took Mitoxantrone in smaller than allowed doses over several years.
I take several handfuls of pills daily: Minocycline, Memantine, Efexor, Zocor, Baclofen, LDN, Prazosin (bladder problems), Coloxyl with Senna (constipation), Fish Oil, Glucosamine, Neprinol (dissolves flbrin plaques), Syntol (microflora), Vitamin D.
I'm trying to access one of the M.S. Vaccines (i.e. NeuroVax) but am having difficulty obtaining any of them in Australia.
I use Propranolol for the
I use Propranolol for the tremors. Baclofen for the spasticity, especially in my rib cage area. Without it, I have troubles talking and breathing. High doses of Vitamin D weekly, which the blood work has confirmed has brought my levels back to normal. Neurontin for the numbness and tingling in my feet. Trileptal for the shooting nerve sensations into my face (neuropathy).
Topamax for the migraines. GABA amino enzymes, a neuro transmitter which actually works on preventing my migraines better than the Topamax. Zomig for the migraines AFTER I get one. Ovcon-35 birth control pills have been used to stop my menstral cycle in order to permanently stop my hormonal migraines (I am near completing perimenopause anyway).
Due to being able to show symptoms going back into the late 70's, and having a diagnosis of Chronic Fatigue in the late '80s and Fibroyalgia in 2000 - and being diagnosed with MS in 2003 - the doctor assumes that I have had MS all these years. I am still mostly functioning with symptomatic medications, except mostly the extreme fatigue which keeps me from being sedentary for working at a computer (I am a graphic designer by education and trade). The doctor and I have mutually agreed that I can wait until a better drug comes out on the market to take versus the current batch of ABC-R drugs. My lesions are minimal and stay that way on my yearly MRI, and are not in any areas of great concern. The flare-ups are manageable.
I take LDN, 4-AP and
I take LDN, 4-AP and Prokarin.
I have been taking Avonex
I have been taking Avonex for 9 years. I take detrol for my bladder, wellbutrin for depression, and aricept for mental clarity and sharpness.
I only counted Copaxone &
I only counted Copaxone & ginko biloba (for fatigue) as my 2 daily meds... but I forgot about Gabapentin (which I take occasionally when leg spasms make sleeping hard)... and all those vitamin/mineral pills I take without thinking about them: B, C, D, E, Calcium, multi-V...
I'm doing pretty well, if I budget my energy properly. 20 years post-dx, I use a cane... not too bad. But I envy people who have family to look after them - my husband walked out when I started using a cane.
Come to my fundraiser for the Accelerated Cure Project! Sing to Cure MS 2008 - October 26 in Arlington, MA. See singtocurems.org for details!
I just recently stopped 3
I just recently stopped 3 other meds I have been taking. Sp, instead of 6-10, I would be in the > 10 category. I take 2 drugs for fatigue and 2 for spacticity. Without these medications, I would not be able to function at all. I am on Copaxone. Neither my neurologist or I know if it working, but I don't want to take the chance that it is not.
I only take LDN some
I only take LDN some supplements and vitamins and feel the LDN has halted the progression of my disease.(RRMS)
This was a hard question to
This was a hard question to answer; I take homeopathic remedies, the number of which change, and supplements. I have never taken any of the standard drugs for MS having chosen 5 Element Acupuncture and other alternative treatments after my diagnosis in 1995. All was going well until what I thought was going to be a routine MRI in 2006 showed my first significant increase in lesions as well as the size of my existing lesions growing. Soon after is when I started to treat with homeopathy. I think it is helping and it is hard to say for sure. I believe in the homeopathic theory of treatment, that being looking beyond the symptoms to the causes and treating those. I do however have an appointment in 2 days with a new neurologist who is open to prescribing LDN. Any comments from those of you taking LDN would be greatly appreciated. Please send to me directly at debjrichards@gmail.com.
Blessings to us all as we live our lives with the constant companion named MS.
I am currrently taking none
I am currrently taking none as I have gone the homeopathic way
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