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I need suggestions
babbonm posted:
I was diagnosised with MS last October and it took till December to get in to see a specialist for medical treatment. Out of the 4 injectables available my doctor would only use on, Copaxone because the other medications, one of the side affects was possible seizures, and I am already having seizures (the doctor believes) due to the MS. Well to make a long store short I started having reactions to the Copaxone and my doctor took me off of it, but now she wants to treat me with Vitimin D for the MS. I have looked everywhere I could think of on the interenet regarding treatment for MS with Vitimin D and can not find anything.
Can any one help with with suggestions as to where to look? I would very much appreciate it.
Barbara
Can any one help with with suggestions as to where to look? I would very much appreciate it.
Barbara
58 Replies |Watch This Discussion | Report This| Share this:I need suggestionsI was diagnosised with MS last October and it took till December to get in to see a specialist for medical treatment. Out of the 4 injectables available my doctor would only use on, Copaxone because the other medications, one of the side affects was possible seizures, and I am already having seizures (the doctor believes) due to the MS. Well to make a long store short I started having reactions to the Copaxone and my doctor took me off of it, but now she wants to treat me with Vitimin D for the MS. I have looked everywhere I could think of on the interenet regarding treatment for MS with Vitimin D and can not find anything.<br /> <br />Can any one help with with suggestions as to where to look? I would very much appreciate it.<br /> <br />Barbara
mmthlvr responded:
Hi Barbara, what kind of reaction did you have to the Copaxone?
I don't know a lot about the vitamin D, but my Dr also has me taking it. I know I'm very vitamin D deficient & that plays a part in MS but I can't what part it can play as far as treatment goes.
I hope you find what your looking for.
Tammy
I don't know a lot about the vitamin D, but my Dr also has me taking it. I know I'm very vitamin D deficient & that plays a part in MS but I can't what part it can play as far as treatment goes.
I hope you find what your looking for.
Tammy
Report This| Share this:I need suggestionsHi Barbara, what kind of reaction did you have to the Copaxone?<br />I don't know a lot about the vitamin D, but my Dr also has me taking it. I know I'm very vitamin D deficient & that plays a part in MS but I can't what part it can play as far as treatment goes. <br />I hope you find what your looking for.<br />Tammy
Neil S Lava, MD responded:
Vitamin D is low in patients with MS and it seems that low vitamin D is seen at the time of diagnosis and may be one of the factors that predisposes people to get this disease. There is also some preliminary data to suggest that elevating low Vitamin D levels will reduce the number of exacerbations over time.
I have my patients take Vitamin D supplement, but I also keep them on the other MS therapies (Interferons, Copaxone, Tysabri, etc).
I think you might want to get another opinion about therapy since being on Vitamin D alone for MS is not an established therapy.
I have my patients take Vitamin D supplement, but I also keep them on the other MS therapies (Interferons, Copaxone, Tysabri, etc).
I think you might want to get another opinion about therapy since being on Vitamin D alone for MS is not an established therapy.
Report This| Share this:I need suggestionsVitamin D is low in patients with MS and it seems that low vitamin D is seen at the time of diagnosis and may be one of the factors that predisposes people to get this disease. There is also some preliminary data to suggest that elevating low Vitamin D levels will reduce the number of exacerbations over time.<br />I have my patients take Vitamin D supplement, but I also keep them on the other MS therapies (Interferons, Copaxone, Tysabri, etc).<br />I think you might want to get another opinion about therapy since being on Vitamin D alone for MS is not an established therapy.
VitaminDman responded:
I am an attorney in Tucson, AZ diagnosed with PPMS 5 years ago. I had active MS lesions at the time of my diagnosis. I was told there was no effective treatment. I then read hundreds of studies and found that an elevated 25(OH)D level was associated with lower icidence of MS. I found mouse studies where vitamin D completely preventsd attempts to induce MS in mice. Based on these, and other, studies, i raised my 25(OH)D level to >100. For the past 4 years I have had no active lesions, verified by 3 gadolinium MRIs. You can view a summary of the research I found at www.vitamindmscure.com, or email me at jdyer@kss-law.com, and I can give you more information.According to the research, there are no side effects associated with raising your 25(OH)D level to between 100-150, and if you read the articles, you will see that vitamin d has an immunomodulating effect that stops white blood cells from attacking your nerves. I'm not a doctor, but this has worked for me, is based on sound studies, and i believe it will help everyone with MS.
Taking 15,000 IU/day keeps my blood level around 120. There are absolutely no reported adverse effects at this level. My wife takes 50,000/week, and her blood level is right around 70. You will soon get a sense of how much you need to take with regular 25(OH)D tests(get blood calcium as well). best of luck.
Jim Dyer
Taking 15,000 IU/day keeps my blood level around 120. There are absolutely no reported adverse effects at this level. My wife takes 50,000/week, and her blood level is right around 70. You will soon get a sense of how much you need to take with regular 25(OH)D tests(get blood calcium as well). best of luck.
Jim Dyer
Report This| Share this:I need suggestionsI am an attorney in Tucson, AZ diagnosed with PPMS 5 years ago. I had active MS lesions at the time of my diagnosis. I was told there was no effective treatment. I then read hundreds of studies and found that an elevated 25(OH)D level was associated with lower icidence of MS. I found mouse studies where vitamin D completely preventsd attempts to induce MS in mice. Based on these, and other, studies, i raised my 25(OH)D level to >100. For the past 4 years I have had no active lesions, verified by 3 gadolinium MRIs. You can view a summary of the research I found at www.vitamindmscure.com, or email me at jdyer@kss-law.com, and I can give you more information.According to the research, there are no side effects associated with raising your 25(OH)D level to between 100-150, and if you read the articles, you will see that vitamin d has an immunomodulating effect that stops white blood cells from attacking your nerves. I'm not a doctor, but this has worked for me, is based on sound studies, and i believe it will help everyone with MS.<br />Taking 15,000 IU/day keeps my blood level around 120. There are absolutely no reported adverse effects at this level. My wife takes 50,000/week, and her blood level is right around 70. You will soon get a sense of how much you need to take with regular 25(OH)D tests(get blood calcium as well). best of luck.<br />Jim Dyer
MSmommom responded:
Your story mirrors mine, as most of MS stories do. I too was recently put on Copaxone and had 2, serious adverse reactions that landed me in the hospital for 5 day stay, and I mean, 2 separate occasions, 2 separate hospital stays. My neuro has now put me on a vitamin that has folic acid in it, and B-6,B-12 and a pill that I havent looked up yet, but I beleive it is used off label to try and re-direct the immune system. I have never had my D levels checked but thanks because you reminded me that I keep forgetting to ask my doc to do that. I will keep an eye out for any info you are looking for.
Best o luck
Cathy
Best o luck
Cathy
Report This| Share this:I need suggestionsYour story mirrors mine, as most of MS stories do. I too was recently put on Copaxone and had 2, serious adverse reactions that landed me in the hospital for 5 day stay, and I mean, 2 separate occasions, 2 separate hospital stays. My neuro has now put me on a vitamin that has folic acid in it, and B-6,B-12 and a pill that I havent looked up yet, but I beleive it is used off label to try and re-direct the immune system. I have never had my D levels checked but thanks because you reminded me that I keep forgetting to ask my doc to do that. I will keep an eye out for any info you are looking for.<br />Best o luck<br />Cathy
clanc113 responded:
I was diagnosed over 10 years ago and used injectables for many years. I started getting worse and was not getting help from former neurologist. I saw another neurologist and thought she sounded good. I have been on Tysabri (montly IV infusion) for the past year and it is working great and nice not having to do shots! All treatments have side affects, they just have to say it... Just have to do what works best for you until cure comes around.
Report This| Share this:I need suggestionsI was diagnosed over 10 years ago and used injectables for many years. I started getting worse and was not getting help from former neurologist. I saw another neurologist and thought she sounded good. I have been on Tysabri (montly IV infusion) for the past year and it is working great and nice not having to do shots! All treatments have side affects, they just have to say it... Just have to do what works best for you until cure comes around.
Rory26312 responded:
Hi Barbara
While increasing your vitamin D levels may well help you ,it is not
a disease modifying therapy on it's own.
You need to be on one of the injectibles or possibly Tysabri in order to , prevent possible long term disability.
Do some research and check out the options for yourself and as Dr. Lava said a second opinion may be in order.
Rory
While increasing your vitamin D levels may well help you ,it is not
a disease modifying therapy on it's own.
You need to be on one of the injectibles or possibly Tysabri in order to , prevent possible long term disability.
Do some research and check out the options for yourself and as Dr. Lava said a second opinion may be in order.
Rory
Report This| Share this:I need suggestionsHi Barbara<br /> <br />While increasing your vitamin D levels may well help you ,it is not<br />a disease modifying therapy on it's own.<br /> <br />You need to be on one of the injectibles or possibly Tysabri in order to , prevent possible long term disability.<br /> <br />Do some research and check out the options for yourself and as Dr. Lava said a second opinion may be in order.<br /> <br />Rory
Janonly replied to VitaminDman's response:
Thank You!!
That answers a big question for me and the break down was an added bonus... Your research and sharing is not in vain.
Jan
That answers a big question for me and the break down was an added bonus... Your research and sharing is not in vain.
Jan
Report This| Share this:I need suggestionsThank You!!<br /><br />That answers a big question for me and the break down was an added bonus... Your research and sharing is not in vain. <br /><br />Jan
I would like add a little anecdotal experience. I was diagnosed with MS almost 5 years ago, and although I am on avonex I still take vitamin D. (My neurologist did not put me on it, but highly approved when i started taking it). I was sick constantly before I started taking vitamin D. I only take 5000 IU a day (which is low for a vit D "therapy") but I must say it has CHANGED the way I feel. I think you should try and find another disease modifying drug that will work if you can, but I would wholeheartedly recommend taking Vitamin D. I have not gotten sick since I started taking it a year ago....I have had one minor MS exaccerbation, but when it comes to my immune system and its ability to properly function- I owe my health this past year to Vitamin D. So there is a highly uneducated, but totally personal response. -R
Report This| Share this:I need suggestionsI would like add a little anecdotal experience. I was diagnosed with MS almost 5 years ago, and although I am on avonex I still take vitamin D. (My neurologist did not put me on it, but highly approved when i started taking it). I was sick constantly before I started taking vitamin D. I only take 5000 IU a day (which is low for a vit D "therapy") but I must say it has CHANGED the way I feel. I think you should try and find another disease modifying drug that will work if you can, but I would wholeheartedly recommend taking Vitamin D. I have not gotten sick since I started taking it a year ago....I have had one minor MS exaccerbation, but when it comes to my immune system and its ability to properly function- I owe my health this past year to Vitamin D. So there is a highly uneducated, but totally personal response. -R
Hi MSmommom, I was wondering if you could post the names of the pills your neuro has put you on, I'm at a crossroads in tx. and am looking for some alternatives....Thank you!
Report This| Share this:I need suggestionsHi MSmommom, I was wondering if you could post the names of the pills your neuro has put you on, I'm at a crossroads in tx. and am looking for some alternatives....Thank you!
healthyjono responded:
Hi Barbara, Can you help me with any information. My name is Joe and I was diagnosed in 04 with MS. I Started Rebif in 06 and started having Gran Mal seizures in 07 and stayed on rebif because my well respected Neuro said that they were not MS seizure types and Rebif was not the cause. Well three years later and four antiepileptic medicines daily and the seizures are still active. Before the first Gran mal I dont know if I was having seizures. I know I had twitches like uncontrolable foot shakes especially during sleep. Can you tell me what types of seizures you were or are having. I really need some help.
Report This| Share this:I need suggestionsHi Barbara, Can you help me with any information. My name is Joe and I was diagnosed in 04 with MS. I Started Rebif in 06 and started having Gran Mal seizures in 07 and stayed on rebif because my well respected Neuro said that they were not MS seizure types and Rebif was not the cause. Well three years later and four antiepileptic medicines daily and the seizures are still active. Before the first Gran mal I dont know if I was having seizures. I know I had twitches like uncontrolable foot shakes especially during sleep. Can you tell me what types of seizures you were or are having. I really need some help.
I too have been on 5000iu's daily for two years with no progression evident and I will be able to get the Liberation treatment on Friday the 23 since I can still fly. the Vitamin "D" has worked that well for me.
Report This| Share this:I need suggestionsI too have been on 5000iu's daily for two years with no progression evident and I will be able to get the Liberation treatment on Friday the 23 since I can still fly. the Vitamin "D" has worked that well for me.
I was diagnosed wilth MS in 2006 and have been taking an 1000units of Vit D wiht a multivitamin for about 2 months since a blood test showed a low count an stay on my MS therapy of Rebif. I have noticed that I "feel" bette and interact with my family more. I have not researched any "Viamin D therapy" but all of your conversations, I fully agee with only after 2 months and encourages me to stick with it. I would also recommend taking Vita D with your MS therapy drug.
Report This| Share this:I need suggestionsI was diagnosed wilth MS in 2006 and have been taking an 1000units of Vit D wiht a multivitamin for about 2 months since a blood test showed a low count an stay on my MS therapy of Rebif. I have noticed that I "feel" bette and interact with my family more. I have not researched any "Viamin D therapy" but all of your conversations, I fully agee with only after 2 months and encourages me to stick with it. I would also recommend taking Vita D with your MS therapy drug.
msmything replied to VitaminDman's response:
Thanks for the links D-man, I was wondering what your neuro thought about your taking D, pro or con?
Also, are there other methods of ingestion? IE can you get yourself up to a high level by injection?
Is there a particular brand you find effective?
Also, are there other methods of ingestion? IE can you get yourself up to a high level by injection?
Is there a particular brand you find effective?
Report This| Share this:I need suggestionsThanks for the links D-man, I was wondering what your neuro thought about your taking D, pro or con?<br />Also, are there other methods of ingestion? IE can you get yourself up to a high level by injection?<br />Is there a particular brand you find effective?
deafedteacher replied to clanc113's response:
I too am on Tysabri. For me it has been a miracle drug! I have been on it for almost 3 years and have never had a side effect from it. I get it done right in my MS doctor's office, I see a nurse practioner before the infusion, a second nurse practitioner does the infusion and is right there to monitor for signs of any possible side effects. The whole process takes about 2 1/2 hours (1/2 hour to meet with nurse prior to the infusion, 1 hour for the infusion, and 1 hour of observation to monitor for any possible side effects) and the best part is that if I have any questions I will be able to ask at least once per month when I get the infusion (my memory is affected by the MS and to have to wait months for an appointment would never work for me as I would have forgotten the question).
In reference to the vitamin D... I have read studies that say vitamin D we get from the sun may be one of the most important part of never developing the disease. Infact, the closer you live to the equator (more sun) the insidence of MS drops dramatically as compaired to those who live further away from the equator. Not being able to be out in the sun much means the vitamin D needs to be supplimented as you dont get enough from the sun.
I hope that this helps you!
In reference to the vitamin D... I have read studies that say vitamin D we get from the sun may be one of the most important part of never developing the disease. Infact, the closer you live to the equator (more sun) the insidence of MS drops dramatically as compaired to those who live further away from the equator. Not being able to be out in the sun much means the vitamin D needs to be supplimented as you dont get enough from the sun.
I hope that this helps you!
Report This| Share this:I need suggestionsI too am on Tysabri. For me it has been a miracle drug! I have been on it for almost 3 years and have never had a side effect from it. I get it done right in my MS doctor's office, I see a nurse practioner before the infusion, a second nurse practitioner does the infusion and is right there to monitor for signs of any possible side effects. The whole process takes about 2 1/2 hours (1/2 hour to meet with nurse prior to the infusion, 1 hour for the infusion, and 1 hour of observation to monitor for any possible side effects) and the best part is that if I have any questions I will be able to ask at least once per month when I get the infusion (my memory is affected by the MS and to have to wait months for an appointment would never work for me as I would have forgotten the question).<br /> <br />In reference to the vitamin D... I have read studies that say vitamin D we get from the sun may be one of the most important part of never developing the disease. Infact, the closer you live to the equator (more sun) the insidence of MS drops dramatically as compaired to those who live further away from the equator. Not being able to be out in the sun much means the vitamin D needs to be supplimented as you dont get enough from the sun.<br /> <br />I hope that this helps you!
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