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Does RRMS always progress to SPMS?
I was just wondering if it is at all possible to have a mild case of MS throughout one's lifetime? I have had mild MS-like symptoms for 22 years now, without any major attacks..and symptoms which include bladder issues (frequency and feeling like I always have to go --this waxes and wanes,
sensory sensations-tingling, burning, very little numbness, pricking, feeling of liquid dripping under skin, vision issues (may have had optic neuritis right after I had the chicken pox), also some other minor vison issues like tons of floaters, weird distortions upon waking from deep sleep (goes away very quickly),
when cold fingers get a little numb quickly, same as with thighs, and when out in the cold i have pain in inner ear,
sometimes cant recall words, but this doesnt happen too often, no sexual desire.
I have not been diagnosed. Last MRI's were 4 years ago of brain and C_spine and they were normal. Is it possible to have normal brain and C-spine MRi's after having MS symptoms for 18 years? I also had normal MRI's years ago of brain and T-spine and normal spinal tap.
I believe I have MS because what else could it be after all these years? All symptoms are MS symptoms, I am lucky they have all been mild. The worst being the bladder. It was my first symptom. I have never had any problems walking, I can still work out fine at the gym doing strength training and eliptical machine. My biceps and hamstrings seem like they may be somewhat weak as I am doing the exercises.
I am doing the OMS diet---Dr. George Jenelik. If you would like to check it out the website is www.overcomingmultiplesclerosis.org. I believe in this diet. George JEnelik has MS, his mother had it too, and he has gone through all of the medical research and ;literature has come up with this diet plan-or lifestyle change that worked for him. He has been on it for 10 years with no more progression and no symptoms of MS!! There is proof in the works of Dr. Swank that a diet low in saturated fat works to stop the progression of MS.
Anyway, what I have found about the progression of RRMS is that it usually does progress to SPMS. Does anyone have anymore information on this?
Thanks for your help and taking the time to read my post.
sensory sensations-tingling, burning, very little numbness, pricking, feeling of liquid dripping under skin, vision issues (may have had optic neuritis right after I had the chicken pox), also some other minor vison issues like tons of floaters, weird distortions upon waking from deep sleep (goes away very quickly),
when cold fingers get a little numb quickly, same as with thighs, and when out in the cold i have pain in inner ear,
sometimes cant recall words, but this doesnt happen too often, no sexual desire.
I have not been diagnosed. Last MRI's were 4 years ago of brain and C_spine and they were normal. Is it possible to have normal brain and C-spine MRi's after having MS symptoms for 18 years? I also had normal MRI's years ago of brain and T-spine and normal spinal tap.
I believe I have MS because what else could it be after all these years? All symptoms are MS symptoms, I am lucky they have all been mild. The worst being the bladder. It was my first symptom. I have never had any problems walking, I can still work out fine at the gym doing strength training and eliptical machine. My biceps and hamstrings seem like they may be somewhat weak as I am doing the exercises.
I am doing the OMS diet---Dr. George Jenelik. If you would like to check it out the website is www.overcomingmultiplesclerosis.org. I believe in this diet. George JEnelik has MS, his mother had it too, and he has gone through all of the medical research and ;literature has come up with this diet plan-or lifestyle change that worked for him. He has been on it for 10 years with no more progression and no symptoms of MS!! There is proof in the works of Dr. Swank that a diet low in saturated fat works to stop the progression of MS.
Anyway, what I have found about the progression of RRMS is that it usually does progress to SPMS. Does anyone have anymore information on this?
Thanks for your help and taking the time to read my post.
The OMS website is not proof. Show me the clinical study, its design and the raw data. Too many "claims" are "proven" by incomplete and bogus science. There are a few folks on this forum that have spent a bunch of time looking at studies and data. Please don't accept claims and published information as proof. It takes a bit, but reading the studies and understanding the design of a study will lead to the the one universal truth:
There are lies, there are damn lies and then there are statistics!
For every "study" that says "X" works, you will find "well designed, double blinded, control referenced study" that say "X" is junk. If you don't see "double blinded" or "controlled," in the description of the study, THAT IS A RED FLAG. If you see the word "RETROSPECTIVE" that is ANOTHER RED FLAG. If the study doesn't compare so the number of true positives (Sensitivity) vs false negatives (Selectivity) that is a RED FLAG!
As a health care consumer, you have to be able to ask the tough questions, since many of our doctors do not. Just because it is 2011, doesn't mean there are no more con artists or snake oil salesmen. I'm sorry to say this, but sick people with chronic diseases are easy marks.
The National MS Society states: "...Most of the diets that have been touted as helping people with MS have not been subjected to rigorous, controlled studies, and the few that have been evaluated have produced mixed results. Most of the claims made for dietary treatments are based on personal accounts, and the reported benefits may have been spontaneous changes that would have happened without any treatment."
If you think diet works, great. I have not seen a large population double blinded peer reviewed publication that show any major effect on the long term outcomes (decreased ESDD, etc.) of RRMS patients. Most of the data I have seen is based on subjective anecdotal evidence.
SHOW ME OBJECTIVE BLINDED EVIDENCE and I will rethink my position, but until then, it is the same Snake Oil whether it is sold by an MD or a side show geek. Selling books is pretty profitable:
While this is a public forum, and folks may exercise their opinions, I will feel free to exercise my science. A quick trip to the National MS site will show that they do not accept any evidence that "special diets" have been proven to effect the overall outcome of this disease in PwMS. Caveat emptor!
Bob
There are lies, there are damn lies and then there are statistics!
For every "study" that says "X" works, you will find "well designed, double blinded, control referenced study" that say "X" is junk. If you don't see "double blinded" or "controlled," in the description of the study, THAT IS A RED FLAG. If you see the word "RETROSPECTIVE" that is ANOTHER RED FLAG. If the study doesn't compare so the number of true positives (Sensitivity) vs false negatives (Selectivity) that is a RED FLAG!
As a health care consumer, you have to be able to ask the tough questions, since many of our doctors do not. Just because it is 2011, doesn't mean there are no more con artists or snake oil salesmen. I'm sorry to say this, but sick people with chronic diseases are easy marks.
The National MS Society states: "...Most of the diets that have been touted as helping people with MS have not been subjected to rigorous, controlled studies, and the few that have been evaluated have produced mixed results. Most of the claims made for dietary treatments are based on personal accounts, and the reported benefits may have been spontaneous changes that would have happened without any treatment."
If you think diet works, great. I have not seen a large population double blinded peer reviewed publication that show any major effect on the long term outcomes (decreased ESDD, etc.) of RRMS patients. Most of the data I have seen is based on subjective anecdotal evidence.
SHOW ME OBJECTIVE BLINDED EVIDENCE and I will rethink my position, but until then, it is the same Snake Oil whether it is sold by an MD or a side show geek. Selling books is pretty profitable:
While this is a public forum, and folks may exercise their opinions, I will feel free to exercise my science. A quick trip to the National MS site will show that they do not accept any evidence that "special diets" have been proven to effect the overall outcome of this disease in PwMS. Caveat emptor!
Bob
HI Julie. Thanks for your post. I was wondering what your sx are? You said that they were similar to mine. Im glad you are relatively sx free also. And it seems like we have has sx for almot the same length of time. Me, 22 years.
The reason I say the diet and lifestyle changes can slow or reverse the progression is because I have read about Swank's patients, and others. Also, did you read about Terry Wahl who absolutely got herself out of a wheelchair and reversed her symptoms? There are many accounts that do suggest this is possible with lifestyle changes--not just diet. Also, what about the Best Bet Diet.?? I think that is the one where the son has MS and he went on this diet his parents had researched and he is also sx free.
As for the cow's milk and Ms link...it has been proven. There is a link to the article on the OMS website if you would like to read it for yourself. And if you would like to read the OMS book, Jenelik does provide alot of proof that this diet and lifestlye changes does work. He basis this on scientific evidence...medical studies that have been done. He has gone through all of the research himself--for over 10 years. He has MS himself..his mother died of MS....he is doing this to help us, and for no other reason.
He has been symptom free for years....his MS seems to have reversed itself. If it worked for him andDr. Terry Wahls and countless others...then why woudlnt it work for us?
Im willing to give it a try and see. It does take a while, changes do not happen overnight. So we'll see.
Julie, I also wanted to ask you....how were you diagnosed
? Was it years ago with an MRI? Did you have lessions? I was curious because if we are similar as in sx and years having them....I wonder results of MRI would be similar. Mine did not show anything but I did not have a t-spine MRI for many many years. Brain and c-spine were clear after 18 years of sx's.
Another poster also mentioned maybe chicken pox caused my vision problems. Thats what the eye dr. said who I went to see back then. He thought the chicken pox virus caused my vision issues.
And for the person whose consultant said after 15 years RRMS usually starts to decline...well if I do have MS, its been 22 years and Im far from decline thank-god.
I just wanted you all to know that there is proof out there that diet and lifestlye changes like Professor Jenelik's OMS diet works. I would not be saying so if there wasnt. Maybe if you read the book or looked at the many links to medical studies on the website, you would see for yourselves. Professor Jenelik is a medical dr. So is Terry Wahls. THey both have MS did the research, understanding it much better than you or I ever could....developed a lifestyle program and they both got better...and are living sx free lives....now if that isnt motivation, I dont know what is.
The reason I say the diet and lifestyle changes can slow or reverse the progression is because I have read about Swank's patients, and others. Also, did you read about Terry Wahl who absolutely got herself out of a wheelchair and reversed her symptoms? There are many accounts that do suggest this is possible with lifestyle changes--not just diet. Also, what about the Best Bet Diet.?? I think that is the one where the son has MS and he went on this diet his parents had researched and he is also sx free.
As for the cow's milk and Ms link...it has been proven. There is a link to the article on the OMS website if you would like to read it for yourself. And if you would like to read the OMS book, Jenelik does provide alot of proof that this diet and lifestlye changes does work. He basis this on scientific evidence...medical studies that have been done. He has gone through all of the research himself--for over 10 years. He has MS himself..his mother died of MS....he is doing this to help us, and for no other reason.
He has been symptom free for years....his MS seems to have reversed itself. If it worked for him andDr. Terry Wahls and countless others...then why woudlnt it work for us?
Im willing to give it a try and see. It does take a while, changes do not happen overnight. So we'll see.
Julie, I also wanted to ask you....how were you diagnosed
? Was it years ago with an MRI? Did you have lessions? I was curious because if we are similar as in sx and years having them....I wonder results of MRI would be similar. Mine did not show anything but I did not have a t-spine MRI for many many years. Brain and c-spine were clear after 18 years of sx's.
Another poster also mentioned maybe chicken pox caused my vision problems. Thats what the eye dr. said who I went to see back then. He thought the chicken pox virus caused my vision issues.
And for the person whose consultant said after 15 years RRMS usually starts to decline...well if I do have MS, its been 22 years and Im far from decline thank-god.
I just wanted you all to know that there is proof out there that diet and lifestlye changes like Professor Jenelik's OMS diet works. I would not be saying so if there wasnt. Maybe if you read the book or looked at the many links to medical studies on the website, you would see for yourselves. Professor Jenelik is a medical dr. So is Terry Wahls. THey both have MS did the research, understanding it much better than you or I ever could....developed a lifestyle program and they both got better...and are living sx free lives....now if that isnt motivation, I dont know what is.
I first read this thread yesterday and it has stayed on my mind since then for several reasons.
First, some of my symtoms are similar to bornworrier, and I too seem to have a "mild" case of MS (I realize this term is not acturate and bornworrier isn't actually dx with MS). After almost 20 yrs of the onset of my first episode, I am currently relatively sx free.
Second, I too chose to incorporate a new eating plan into my routine to "help" my chances of slowing the progresson of the disease and feel like I had some control. But I do so with the knowledge that it may be doing no actual good in regard to my MS. It's a shot in the dark.
I guess what bothered about the thread at first was the assumption that this MS diet actually stops and/or prevents MS. And that there is a link between cows milk and MS. I don't believe any of that has been proven.
The initial question was about progression. I believe the stats indicate that the vast majority of people with RRMS will progress (85+%)? So, obviously that leaves room for <15% of people with RRMS to not progress. I am not sure how this is really measured though and if the majority of people who didn't "progress" didn't do so because they were dx later in life for example.
I chose the diet (not Jeneliks diet but closer to Swanks w/o the non fat dairy) b/c it helps me feel like I am in control of something with a disease I have absoltuely no control over. Yes, there are things I can do to mitigate the adverse effects on my body (DMD, stress relief and perhaps diet), but prevent or stop the progression? I don't think so. Still, I am hopeful that my MS will continue to progress s...l....o....w....l...y and I will have a long, relatively sx free, happy life.
I am grateful for this thread b/c it made me realize just how judgemental we can sometimes get when we are searching for the magic formula that will save us from our disease(s). We all want to be right.
My sister, who is a Chemist, told me that she believes many diseases (maybe MS too?) has a component that may eventually be traced back to toxins in our environment and that diet, no matter how much we want it to, cannot in and by inself repair the damage it may have already done to our bodies. Perhaps in the long term we may see benefits, but short term, it is unlikely. So, if you chose the diet, do so not expecting anything in return.
As a person, who by the way, has always had very low cholesterol levels, ate very little red meat, and even less dairy, it is not an easy diet to follow, especially if you have children, and have a busy life. But we all need to do what keeps us sane.
Blessings in abundance!
Julie
First, some of my symtoms are similar to bornworrier, and I too seem to have a "mild" case of MS (I realize this term is not acturate and bornworrier isn't actually dx with MS). After almost 20 yrs of the onset of my first episode, I am currently relatively sx free.
Second, I too chose to incorporate a new eating plan into my routine to "help" my chances of slowing the progresson of the disease and feel like I had some control. But I do so with the knowledge that it may be doing no actual good in regard to my MS. It's a shot in the dark.
I guess what bothered about the thread at first was the assumption that this MS diet actually stops and/or prevents MS. And that there is a link between cows milk and MS. I don't believe any of that has been proven.
The initial question was about progression. I believe the stats indicate that the vast majority of people with RRMS will progress (85+%)? So, obviously that leaves room for <15% of people with RRMS to not progress. I am not sure how this is really measured though and if the majority of people who didn't "progress" didn't do so because they were dx later in life for example.
I chose the diet (not Jeneliks diet but closer to Swanks w/o the non fat dairy) b/c it helps me feel like I am in control of something with a disease I have absoltuely no control over. Yes, there are things I can do to mitigate the adverse effects on my body (DMD, stress relief and perhaps diet), but prevent or stop the progression? I don't think so. Still, I am hopeful that my MS will continue to progress s...l....o....w....l...y and I will have a long, relatively sx free, happy life.
I am grateful for this thread b/c it made me realize just how judgemental we can sometimes get when we are searching for the magic formula that will save us from our disease(s). We all want to be right.
My sister, who is a Chemist, told me that she believes many diseases (maybe MS too?) has a component that may eventually be traced back to toxins in our environment and that diet, no matter how much we want it to, cannot in and by inself repair the damage it may have already done to our bodies. Perhaps in the long term we may see benefits, but short term, it is unlikely. So, if you chose the diet, do so not expecting anything in return.
As a person, who by the way, has always had very low cholesterol levels, ate very little red meat, and even less dairy, it is not an easy diet to follow, especially if you have children, and have a busy life. But we all need to do what keeps us sane.
Blessings in abundance!
Julie
Yup I will go along with that one! Stem ginger butter cookies are my latest indulgence, along with a cup of English tea in a bone china cup mixed with one large spoonful of never ending humour!!!
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