For what it is worth, my story

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

For what it is worth, my story

Postby jam » Tue Feb 21, 2012 3:58 pm

I have ppms, I am vegetarian - have been since four. I may occasional eat a little bacon, rarely. I have one white coffee per day. I only started eating ice cream in the past years and never ate sweets but now have a craving for sugar. There is so much written about the diets but then why do I have the worst one?

I was very active - running alot.

I have tried the Jelinek diet but lost so much weight my doctor threatened to hospitalise me. (5.5 stone). I am not a big person. When I tried to question him about the diet, he avoided me and would not answer my questions - maybe he did not have the answers. I do not know anyone with ppms who has improved on the diet. Maybe rrms is a different disease/story - I don't know.

Don't flame me - I stopped posting last time a got flamed.

I currently take Naltrexone, 4 aminopridine - none with any success but I am scared stupid if I stop. I have tried MIS416 for two plus years. I tried stemcell in Germany with no sucess.

Hope this is of interest, take care.

Jam
User avatar
jam
Family Member
 
Posts: 67
Joined: Fri Oct 24, 2008 3:00 pm

Advertisement

Re: For what it is worth, my story

Postby jimmylegs » Tue Feb 21, 2012 4:52 pm

hi jam glad you found us but sorry for the circumstances involved!

i'm an ex-vegan dxd in early 2006 and i've been studying health/nutrition science in detail ever since.

you may already know that ms diagnostic tools are not designed to assess non-average patients, for example those with special diets that may have increased risk of nutritional imbalance.

after dx i personally refused to take any dietary measures involving omission of things like red meat, eggs, and dairy, since i had already been free of those for 15 years and got sick regardless. the suggestion made no sense to me, personally.

there are several problematic nutrients seen in ms patients, that you might want to rule out as trouble spots for you as an individual.

you might have heard that b12 and zinc can be problematic for vegetarians. also omega 3s and depending on your lifestyle and where you live, more than likely vitamin d3 too. protein energy. perhaps even magnesium, depending on stress levels, dietary preferences, etc.

high activity levels can also drain important nutrients that are found to be low in ms patients.

have any of your doctors ever suggested bloodwork for any common nutrient problems seen in ms? if not is bloodwork an option?

if any of this interests you please feel free to click through the links below. if you do, please take special note of the bit about the meaning of the normal range and why we ms patients (and all patients) need to understand that concept and take a 'normal' result with a very large grain of salt.

if none of this interests you, there are lots of other areas here on the forum, where you will probably find interesting reading and commiseration.

curious: why did you get flamed??

anyway, welcome again and i hope you get some use out of the site.

jimmylegs
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 9204
Joined: Sat Mar 11, 2006 4:00 pm

Re: For what it is worth, my story

Postby lyndacarol » Tue Feb 21, 2012 9:03 pm

Jam, of course this is of interest to us; if we could not help with your questions in the past, I'm glad you will give us another chance.

My personal belief is that excess insulin is fundamentally involved in the MS cascade. Currently I believe that, in my case, visceral (internal) fat promotes secretion of (–>) cytokines (adipokines) –> insulin –> inflammation –> visceral fat and round and round it goes. Diet can be a major factor in this process, but not necessarily the only one. Perhaps in your case, could you have a germ – virus or bacteria – infecting the pancreas and causing excess insulin to be produced? (Has your doctor ever tested your insulin level?) Or could you have a high level of inflammation for some reason? (A blood test for C-Reactive Protein could show that.)

I think the excess insulin leads to damage inside the blood vessels (causing inflammation and triggering the immune system) and also leads to smooth muscle and skeletal muscle insulin resistance (causing the "creeping paralysis" description decades ago).

This hypothesis is the one that seems most logical to me; but just as each member has a different set of symptoms, each of us has different suspicions of what is going on in this disease. Please read and share the ideas that you find, share your experiences, and share your questions. Welcome again to our community.
User avatar
lyndacarol
Family Elder
 
Posts: 2085
Joined: Thu Dec 22, 2005 4:00 pm

Re: For what it is worth, my story

Postby jam » Wed Feb 22, 2012 1:11 pm

The diabetic thing is interesting. It seems strange that I have only consumed sugar, including soda since having ms. I take d3, fishing oil, flax seed oil.

Interestingly I had a friend who has ms, lived at one end of the street, me at the other. She only ate meat and the occasional potato - she has rrms, so if it could be diet related why is it I have the worse one? She also lived in Oz for many years - so d3 should not have been an issue.

Also I have worked in a business where my now husband has menieres disease, two with parkinsons and me with ms - these ares the ones we know of. It only was about 15 to start with. A lot of disease in a small place I think!

I find the tiredness thing overwhelming, but have to take sleeping pills to get to sleep, I have tried natural supplements to no avail.

Diabetes related, or environmental or from a virus maybe?

Jam
User avatar
jam
Family Member
 
Posts: 67
Joined: Fri Oct 24, 2008 3:00 pm

Re: For what it is worth, my story

Postby jimmylegs » Wed Feb 22, 2012 2:45 pm

hey there, you can have very different diets and end up with the same dietary problems. if you yourself don't get enough dietary zinc in the first place, and meanwhile your meat eating friend eats lower zinc meat options and too much bread and/or high phytate foods, voila - poor zinc status in both.

d3 levels and ambient uvb is correlated with ms in australia, here's just one study: http://content.karger.com/produktedb/pr ... 83&typ=pdf

also, when you move from a low risk area of the globe to a high risk area, one's chances of ending up with ms still increase.

re your workplace - that is certainly a lot of disease in a small population, no fun.

which supplements have you tried for sleep so far? don't answer if you don't want to, but i do know certain nutrients which tend to be low in ms patients, also athletes, and potentially those on certain diets, which could result in fatigue and insomnia (eg magnesium for starters). something you may wish to consider testing and/or diet mods and/or supplementing.

i can't find a study looking at zinc status in meniere's but zinc levels are linked in research to the tinnitus seen often in meniere's patients. your hubby might benefit from a serum zinc test (you might also benefit too) and possibly diet mods w/ supplements. is he also vegetarian by the way?

FYI:
Am J Otol. 1989 Mar;10(2):156-60.
Zinc: the neglected nutrient.
Shambaugh GE Jr.
Abstract
"Zinc was first recognized as essential for animals at the University of Illinois School of Agriculture in 1916, when it was found that zinc-deficient baby pigs were runty, developed dermatitis on their legs, and were sterile. Zinc deficiency was first recognized in man by Dr. Ananda Prasad of Detroit 26 years ago when he measured serum and hair zinc levels in young male Egyptian dwarfs who had failed to mature and were small in stature. By simply adding zinc to their regular diet, they grew in height and became sexually mature. It is now recognized that dwarfism in males is frequent around the Mediterranean, where wheat is the staple of life and has been grown for 4,000 years on the same soil, thereby resulting in the depletion of zinc. Professor Robert Henkin first suggested that zinc deficiency might cause hearing-nerve impairment. Assay of the soft tissues of the cochlea and vestibule revealed a zinc level higher than that of any other part of the body. Previously, the eye was considered to have the highest level of zinc of any organ. To diagnose zinc deficiency clinically, we use serum zinc assays made at the Mayo Clinic Trace Element Laboratory. With zinc supplementation in patients who are marginally zinc deficient, there has been improvement in tinnitus and sensorineural hearing loss in about one-third of elderly adults. We believe zinc deficiency is one causation of presbycusis; by recognizing and correcting it, a progressive hearing loss can be arrested."
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 9204
Joined: Sat Mar 11, 2006 4:00 pm

Re: For what it is worth, my story

Postby lyndacarol » Wed Feb 22, 2012 6:37 pm

Jam – From your response:
The diabetic thing is interesting. It seems strange that I have only consumed sugar, including soda since having ms.
I think you misunderstood me.

Diabetes is defined as having high blood sugar (high glucose) – usually because the body does not produce any insulin (Type I diabetes) or the insulin is not effective (type II diabetes or insulin resistance). It can be checked rather easily by a stick to the finger and testing the blood droplet with a glucose meter. If a healthy human being eats sugar or simple carbohydrates, the healthy body responds by secreting enough insulin to sweep the glucose out of the bloodstream and into the cells.

My suspicion is that the MS body produces TOO MUCH of the hormone, insulin, in response to glucose or simply because the pancreas is malfunctioning, sick or diseased. Insulin is tested by drawing blood, sending it to a lab where it must be tested right away; if it cannot be tested immediately, the sample must be frozen in order to preserve the insulin. Otherwise, insulin will degrade and will not be found in the sample. Your ideal test result will be 3 UU/ML or less.


On another subject that you mentioned… overwhelming tiredness. This can be caused by an underactive thyroid. Have you had a blood test to check all the thyroid hormones – TSH, Free T4, Free T3, Total T3, Reverse T3, and anti-thyroid antibodies? With these tests forms of low functioning thyroid that are often missed can be diagnosed. For example, even an endocrinologist or internist may miss low T3 because they don't test for it. The author Kathryn R Simpson, in her book The MS Solution explains that correcting her thyroid hormone levels improved her MS symptoms.
Last edited by lyndacarol on Sat Feb 25, 2012 1:02 pm, edited 1 time in total.
User avatar
lyndacarol
Family Elder
 
Posts: 2085
Joined: Thu Dec 22, 2005 4:00 pm

Re: For what it is worth, my story

Postby jimmylegs » Thu Feb 23, 2012 6:04 am

only one aspect of the picture of course, but you may find this a worthwhile read, jam
http://ods.od.nih.gov/factsheets/magnesium/

http://ods.od.nih.gov/factsheets/magnesium/#h4
"Early signs of magnesium deficiency include loss of appetite, nausea, vomiting, fatigue, and weakness. As magnesium deficiency worsens, numbness, tingling, muscle contractions and cramps, seizures (sudden changes in behaviors caused by excessive electrical activity in the brain), personality changes, abnormal heart rhythms, and coronary spasms can occur [1,3-4]. Severe magnesium deficiency can result in low levels of calcium in the blood (hypocalcemia). Magnesium deficiency is also associated with low levels of potassium in the blood (hypokalemia) [1,19-20].

Many of these symptoms are general and can result from a variety of medical conditions other than magnesium deficiency."

http://ods.od.nih.gov/factsheets/magnesium/#h7
"The Nurses' Health Study (NHS) and the Health Professionals' Follow-up Study (HFS) follow more than 170,000 health professionals through questionnaires the participants complete every 2 years. ... Over time, the risk for developing type 2 diabetes was greater in men and women with a lower magnesium intake. This study supports the dietary recommendation to increase consumption of major food sources of magnesium, such as whole grains, nuts, and green leafy vegetables [43]."

the rest of the info is very detailed and provides an excellent 'big picture'.
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 9204
Joined: Sat Mar 11, 2006 4:00 pm

Re: For what it is worth, my story

Postby shaight » Thu Feb 23, 2012 10:03 am

i am rrms. i was also a vegetarian, runner, and just active in general. i truly believe that diet helps a lot and i always read jimmylegs (every time i write that i laugh) posts.

what exactly was your stem cell treatment? there are multiple types and certainly a lot of scams going on these days also. sad.
shaight
Family Elder
 
Posts: 136
Joined: Fri Apr 29, 2011 3:00 pm
Location: NH USA

Re: For what it is worth, my story

Postby jimmylegs » Thu Feb 23, 2012 10:55 am

*giggles*
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 9204
Joined: Sat Mar 11, 2006 4:00 pm

Re: For what it is worth, my story

Postby Buchao » Mon Aug 20, 2012 1:15 pm

Hi, I was wondering about the eficciency of non fat diet to preventing/healing MS(i have a gf with family historical), and I would like to know if the vegetarian diet you were doing was a full one( without fish, eggs, etc..) or just a parcial one( no red meat, but fish and eggs were ok), and if it was similar to the one dr swank created?
Buchao
Newbie
 
Posts: 3
Joined: Mon Aug 20, 2012 1:05 pm

Re: For what it is worth, my story

Postby jimmylegs » Mon Aug 20, 2012 2:11 pm

my opinion, a healthful diet *must* include healthy dietary fats. folks who are ill can examine current diet and analyze omega 6 fat vs omega 3 fat. cutting back on O-6 foods, and boosting O-3 foods can be a useful place to start. example: wild salmon and flax seeds are high in omega 3 fatty acid, and are powerfully anti-inflammatory too.

i don't know if i manage to achieve a 1:1 ratio on a daily basis, but it's a target worth aiming for :D

The importance of the ratio of omega-6/omega-3 essential fatty acids.
http://www.ncbi.nlm.nih.gov/pubmed/12442909
Abstract
Several sources of information suggest that human beings evolved on a diet with a ratio of omega-6 to omega-3 essential fatty acids (EFA) of approximately 1 whereas in Western diets the ratio is 15/1-16.7/1. Western diets are deficient in omega-3 fatty acids, and have excessive amounts of omega-6 fatty acids compared with the diet on which human beings evolved and their genetic patterns were established. Excessive amounts of omega-6 polyunsaturated fatty acids (PUFA) and a very high omega-6/omega-3 ratio, as is found in today's Western diets, promote the pathogenesis of many diseases, including cardiovascular disease, cancer, and inflammatory and autoimmune diseases, whereas increased levels of omega-3 PUFA (a low omega-6/omega-3 ratio) exert suppressive effects. In the secondary prevention of cardiovascular disease, a ratio of 4/1 was associated with a 70% decrease in total mortality. A ratio of 2.5/1 reduced rectal cell proliferation in patients with colorectal cancer, whereas a ratio of 4/1 with the same amount of omega-3 PUFA had no effect. The lower omega-6/omega-3 ratio in women with breast cancer was associated with decreased risk. A ratio of 2-3/1 suppressed inflammation in patients with rheumatoid arthritis, and a ratio of 5/1 had a beneficial effect on patients with asthma, whereas a ratio of 10/1 had adverse consequences. These studies indicate that the optimal ratio may vary with the disease under consideration. This is consistent with the fact that chronic diseases are multigenic and multifactorial. Therefore, it is quite possible that the therapeutic dose of omega-3 fatty acids will depend on the degree of severity of disease resulting from the genetic predisposition. A lower ratio of omega-6/omega-3 fatty acids is more desirable in reducing the risk of many of the chronic diseases of high prevalence in Western societies, as well as in the developing countries, that are being exported to the rest of the world.
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 9204
Joined: Sat Mar 11, 2006 4:00 pm

Re: For what it is worth, my story

Postby Buchao » Mon Aug 20, 2012 3:50 pm

Jam, i was wondering...
the vegetary diet you were on was a full type(no fish, no eggs, no chicken) or not(no meat, but fish and chicken were ok)
because if you were on a full type, maybe the lack of omega 3 made you ill.
Buchao
Newbie
 
Posts: 3
Joined: Mon Aug 20, 2012 1:05 pm


Return to General Discussion

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users