Page 1 of 1

New to forums

Posted: Sat Jun 01, 2013 2:41 pm
by KatWoman63
Hello everyone,

I'm a wife and mother of 5 (only one still at home). I was diagnosed with MS in 2011 based on symptoms and lesions found in my brain and neck (MRI). My Neurologist told me that I've probably had the disease since 1995, though. Back then I completely lost sight in my right eye during a vacation trip and it took nearly 2 months for it go away, but I guess because it was associated with some sort of digestive bug that no one could identify, the ER doctors poopoo'd it. As if blindness is no big deal. Anyway, my neuro said that blindness in one eye is often a first symptom of MS.

Here's the clincher: A few months before the MS diagnosis, I started seeing a rheumatologist because of an elevated ANA test and joint pain and weakness (wrists, fingers, ankles, hips). He diagnosed me with Lupus, based on mainly symptoms because the ANA was the only lab work that even hinted at it. Eventually I started experiencing weakness and coordination problems as well as foggy brain symptoms. He was stymied and sent me to a neurologist to see if he could help. That neurologist is the one who diagnosed the MS to the chagrin of my rheumatologist because he felt that many MS patients were misdiagnosed when they really had Lupus. I was more inclined to go with MS because it runs rampant in my family so seemed more logical.

However, my neurologist wanted to have his diagnosis backed up by his mentor since I had a previous Lupus diagnosis, so off I went to see her. She decided not to decide saying it could be either or both. I almost wish I'd been sent to the Lupus Dr. If I hadn't there'd be no doubt in anyone's mind.

Now I've moved to a new state where there's no medicaid for adults with chronic diseases and my husband's work offers no insurance. I'm studying for a new career I can do mostly from home and online and waiting until the new healthcare reform takes affect in 2014 so I can start seeing a neurologist here in my new town, but in the mean time I'm having a flare up and feeling pretty frustrated on my own.

Two weeks ago, on returning home from walking my dog around the block, I decided to do a little gardening. I grabbed my tools and stepped from the driveway onto the grass and my ankle gave. If I hadn't been near the porch and turned to grab hold of it, I would have ended up on the ground with no way to get up and no one to help me. It was very scary. As I held on to the porch I hopped on the other foot to get close enough to sit down on it and tried calling my husband at work. He usually drives out of the area for sales calls, but I got lucky and he was at the office. He came straight home and took me to the ER. I had xrays, which showed nothing so it's a sprain. They put me in a boot brace and gave me crutches. I did everything they told me to do and I've stayed off it except to crutch my way to the bathroom and to get food when I'm the only one home, but two weeks later I still can't put even the slightest weight on it. As I write this too-long introduction I'm remembering that in the couple of weeks preceding the ankle sprain I fell twice in the backyard while throwing the ball for my dog. I thought I just slipped and didn't think much of it. I blamed my shoes and they were probably partly to blame, but it had been a year since I'd had any weakness and that had been connected to my first episode with weakness.

I don't know if any of this is making sense. I'll just stop now as this really is too long. If anyone has any advice, insight, or questions I'm surely open to them. Thank you so much for "listening".

Re: New to forums

Posted: Sat Jun 01, 2013 5:07 pm
by lyndacarol
Welcome to ThisIsMS, KatWoman63.

Vision problems are often a first symptom of MS, your neurologist was correct.

Lupus (SLE) is in the list of 100+ "autoimmune" diseases; MS is included in the same group (although MS has NOT been proven to be a problem of autoimmunity). It is not uncommon for a person diagnosed with one autoimmune disease to be diagnosed with a second or even a third.

There is a wide range of MS symptoms. Balance problems are very common. This may explain your backyard falls while throwing a ball for your dog, as well as the "porch grab." The resulting sprain will get better in its own good time – sprains just take a while.

Since I believe insulin is a major player in MS, I encourage you to eat a very healthy diet – a diet that will not trigger insulin production. Many people find that diet can influence the symptoms of MS. In my opinion, this means a low-carb diet -- remove all trans fats (These increase insulin.) remove all sugar (including beer, wine, etc. which have sugar), remove all artificial sweeteners, including sugar alcohols like sorbitol, xylitol, etc. (These promote insulin production, too.), and remove white flour, white bread, white potatoes, white rice (in fact, all carbs so far as possible – even whole grain carbohydrates spike insulin).

My suspicion is that Fatty Liver Disease is also involved in MS, since visceral fat (belly fat) secretes cytokines (like poison to the internal organs), which lead to increased insulin, which leads to inflammation which leads to more visceral fat… And the cycle goes round and round. Diet is important; in fact, you may find the account of Dr. Terry Wahls and her dramatic improvement in MS interesting (http://www.TerryWahls.com).

Re: New to forums

Posted: Sat Jun 01, 2013 6:03 pm
by KatWoman63
Hello lyndacarol,

Thank you so much for that enlightening response. I was not aware of a possible connection between MS and insulin. My husband is diabetic and my daughter has shown high insulin levels in her lab work so I've done some homework about carbs and the glycemic loads of individual foods. For that reason I'm familiar with the 'white food' taboo. Can you clarify some things concerning a low carb diet, though. I tried the first stages of the Atkins diet not long ago and it made me so constipated that I could barely function. I've since gone to a no artificial sweetener, no processed foods, mainly vegetarian diet, which I enjoy because I'm not a huge meat fan in the first place and the issue of humane treatment of animals concerns me (although organic meats seem to be ok, still learning). I have major digestive problems, which I didn't mention in my intro, and they were immensely reduced by just cutting the artificial sweeteners from my diet.

When you say low carb, do you mean all vegetables and fruits too or just the white, refined, processed, etc.? I know that fruit generally has a higher glycemic load than vegetables and greens, but they both have a much lower glycemic load than the white foods and grains, so where does that put me? Is a vegetarian diet bad for me then?

Oh that leads me to another issue. In 2009 I had my gallbladder removed (speaking of the liver) because it was virtually non functioning (very low refraction rate) and causing sever pain and increased IBS symptoms with literally every time I ate. Upon examining the organ after it was removed, the surgeon told me that there were no stones, but that it showed signs of unexplainable sever scaring. Could that be related to insulin production as well? Those symptoms were greatly improved with the surgery, but not eliminated completely so I still watch my trans and sat fats, almost avoiding them like the plague.

OK. So, I've cut all these things as well as most gluten (which is killing me btw because I can't find a decent GF bread or tortilla or recipe for them) and what seems to be left is the carbs from fruits and veggies and the occasional whole grain.

Please help. :sad: I'm going right now to check the web address you gave me. Thank you.

Re: New to forums

Posted: Sat Jun 01, 2013 7:25 pm
by want2bike
Get on a good diet for MS. Dr. Swank, paleo, or vegan diet seem to help with MS. Find the right diet and you can get well. Dr. Bergman explains how you can get well in 30 to 60 days. What have you got to lose. It might works.


Re: New to forums

Posted: Sat Jun 01, 2013 8:00 pm
by jimmylegs
vegan diet GAVE me ms.. moderation is the key

Re: New to forums

Posted: Sun Jun 02, 2013 8:30 am
by lyndacarol
KatWoman63 wrote: I was not aware of a possible connection between MS and insulin. My husband is diabetic and my daughter has shown high insulin levels in her lab work so I've done some homework about carbs and the glycemic loads of individual foods. For that reason I'm familiar with the 'white food' taboo. Can you clarify some things concerning a low carb diet, though. I tried the first stages of the Atkins diet not long ago and it made me so constipated that I could barely function. I've since gone to a no artificial sweetener, no processed foods, mainly vegetarian diet, which I enjoy because I'm not a huge meat fan in the first place and the issue of humane treatment of animals concerns me (although organic meats seem to be ok, still learning). I have major digestive problems, which I didn't mention in my intro, and they were immensely reduced by just cutting the artificial sweeteners from my diet.

When you say low carb, do you mean all vegetables and fruits too or just the white, refined, processed, etc.? I know that fruit generally has a higher glycemic load than vegetables and greens, but they both have a much lower glycemic load than the white foods and grains, so where does that put me? Is a vegetarian diet bad for me then?

Oh that leads me to another issue. In 2009 I had my gallbladder removed (speaking of the liver) because it was virtually non functioning (very low refraction rate) and causing sever pain and increased IBS symptoms with literally every time I ate. Upon examining the organ after it was removed, the surgeon told me that there were no stones, but that it showed signs of unexplainable sever scaring. Could that be related to insulin production as well? Those symptoms were greatly improved with the surgery, but not eliminated completely so I still watch my trans and sat fats, almost avoiding them like the plague.

OK. So, I've cut all these things as well as most gluten (which is killing me btw because I can't find a decent GF bread or tortilla or recipe for them) and what seems to be left is the carbs from fruits and veggies and the occasional whole grain.
There is no official recognition of a "connection between MS and insulin." It is my opinion from personal experience and reading that insulin is a major factor in my MS.

Concerning your experience with the Atkins diet and constipation, I would assume constipation occurred because the diet reduced your glucose, but your insulin did not readjust to a lower level quickly enough in response. The excess insulin affected the smooth muscles surrounding the intestinal tract – responsible for peristalsis, "moving things along." (Excess insulin is KNOWN to thicken and stiffen the smooth muscles; in fact, insulin resistance resulting from excess insulin can affect skeletal muscles, too.) In time, without the continued stimulation of glucose, your pancreas may produce less insulin; unless your pancreas (like mine) continues to secrete excess insulin for some unknown reason (virus? BCG vaccine? long-term habit of high carb diet? other.)

Concentration on highly fibrous vegetables or psyllium – even a glass of warm water with lemon for breakfast – is supposed to help constipation and might be tried. Or the Ayervedic practice of very firm abdominal massage (in a clockwise motion over the intestines) might even help.

When I say low-carb, I mean GREATLY reduce or avoid the highly refined, processed "whites" AND starchy vegetables AND fruits high in the glycemic load. Your second paragraph indicates that you have a perfect understanding of this situation. Rather than a totally vegetarian diet, I think a meat-, poultry-, fish-, or egg-source of protein is very important.

Concerning your gallbladder, I think that can also be related to excess insulin – when you consider the proximity of organs (liver, pancreas, gallbladder) and the common duct. Insulin is a highly irritating hormone (scarring?); it is suspected of having involvement with bladder cancer (and I suspect with UTIs, too); I think it damages blood vessels – it has been linked to high blood pressure as well as type II diabetes and obesity.

With no gallbladder to store bile, it is good to watch your fat, BUT as you probably know, fats are NECESSARY for good health – TRANS FATS ARE BAD!!!

I am undecided about gluten. I think the real culprit could be the protein gliadin. In any event, even whole wheat products will spike insulin and should be avoided. Could you find bread made with oatmeal? – Or coconut flour/meal, almond flour/meal, flax meal (these are low-carb)? My husband and I used to be able to find a low-carb tortilla (I can't remember the brand name), but no more. Maybe another TIMS member can help us out?

Re: New to forums

Posted: Sun Jun 02, 2013 7:11 pm
by want2bike
Not sure anyone can say for sure what gave them MS. Might be a vaccination, mercury filling, drug, or an environmental chemical. Most likely it is a combination of many toxins. Never heard of anyone getting MS because they were on a vegan diet. Have heard of people curing themselves eating fruits and vegetables. Evidence from the China study shows eating animals is a bad thing. About the only nutrient that is not present in a vegan diet may be the B12 vitamins and you can take a pill for that. The animals living today are just as toxic as us. Many vegans that are perfectly healthy.



http://www.peta.org/living/vegetarian-l ... ition.aspx

Re: New to forums

Posted: Sun Jun 02, 2013 9:50 pm
by KatWoman63
Thank you so much! Everyone here is so helpful and your posts are so interesting, informative and thought provoking. I love the links you're adding to your posts and will always check them out as I'm a big proponent of doing my own research.

I'm still learning how to use this reply system. I have two responses that I'm replying to (lyndacarol and want2bike), but only one reply button I'm seeing so hope you're both notified.

Thanks again!
Kat

Re: New to forums

Posted: Mon Jun 03, 2013 2:22 am
by jimmylegs
w, you just heard of it :) it's more than b12 (which i knew about all along, and tested for years, but did not understand the distinction between normal as opposed to healthy, or that permanent damage could result from low levels). zinc is also a trouble nutrient for vegans. not to mention protein. and vit d3, like everybody else not especially vegans. magnesium, like everybody else too. and iron. which is typical for lots of women, but esp vegans. etc.

Re: New to forums

Posted: Mon Jun 03, 2013 5:46 am
by want2bike
Vitamin D is a sunshine vitamin and not sure you can ever get enough vitamin D from diet alone. I was taking cod liver oil and eating salmon and was still deficient in vitamin D. As we get older our bodies have a problem absorbing the vitamins and minerals. It is important for us to eat a variety of fruits and vegetables so we can get all the nutrients. Some vegans think they can eat the process foods and that is OK You need to eat the whole food if you want to get all the vitamins and minerals. Some people are deficient in vitamins and minerals because of the heavy metals they have in their bodies. These heavy metals occupy places on the cell that were made for other minerals. IF you have a mouth full of amalgam filling there is a good chance you will be zinc deficient. Mercury has a higher affinity for the cell and will replace the zinc. Some people are deficient in iodine because of the chlorine, fluorine and bromide they are consuming. I could be wrong but I believe God when he put Adam and Eve in the garden and told them to eat the fruits and vegetables. God put all the nutrients in the vegetables and instructed us to eat them if we want good health. Our bodies weren't designed to eat animals and there is much evidence animals make us sick. My belief is MS is a cause by many things and when you body get more toxins than it can deal with we get sick. Doesn't matter what they name the disease but it is the results of too many toxins and not enough nutrients. There is a problem when we try and figure out which nutrients we need since each of us is different. Sorry you feel be a vegan is responsible for you MS but there are many healthy vegans in our world. The main problem vegans have today is the GMO issue and factory farms. That is not only a vegan problem but they are feeding these GMO foods to the animals. This along with the antibiotics, steroids and pesticides in our environment makes for very sick animals. It is a sick world we live in and each of us must find out what works for us. Since we are all different each of us must find the correct diet.


Re: New to forums

Posted: Mon Jun 03, 2013 6:26 am
by jimmylegs
well i was a long term whole food vegan with multiple recorded deficiencies some of which present in such similar ways to MS that they are *supposed* to be ruled out in the ddx (another story) BUT we can take this debate over to my regimen thread http://www.thisisms.com/forum/regimens- ... ml#p210392 rather than tie up k's intro! on the way there check this out if you like:
Totally Vegetarian Diets and Infant Nutrition
http://pediatrics.aappublications.org/c ... /582.short

Re: New to forums/To Katwoman63

Posted: Mon Jun 03, 2013 9:22 am
by CyndiN
Hello Katwoman63!

I am new to this forum too. I also have lupus. I have probable MS...A person can have more than one autoimmune disease at a time so it may be that you have both, which is what my doctors are saying. I do not have insurance so cannot get the brain MRI just yet. My rhuematologist (a new one I have never seen before from the low income clinic) poo pooed the MS because I have lupus, but he then tried to poo poo the lupus because I have the spine lesions saying, in his mind, that I have MS. He said I have multiple autoimmune response disease...basically more than one autoimmune disease. lol I had my insulin tested, vit D, etc...all these other things that can cause the difficulty walking, random falling etc...I get vertigo often, Menierre's Disease, but now the drs are wondering if it is from MS since I am having hearing loss with vertigo without the calcification that can happen with Menierre's disease...I also have Fibromyalgia which causes nerve and muscle issues...AND I have herniated discs, some stenosis...I have a lot going on so I feel like the doctors might just leave it as probably MS...they ran all sorts of tests to check for blood cancer...I also have melangiomas on my spine. *sigh* I wish I could get in to see a neurologist and rule out cancer with those melangiomas at least. I feel for you!!

Oh! I am a mother of 6, with three adult children at home. We are sharing an apartment. :-D

I sprained my left ankle and knee two years ago...it still hurts. The drs think I tore the tendon but the MRI is not showing anything..it still hurts. I lost my balance and fell, tearing all the muscles and tendons possible in my right hand so it is barely usable. That was a year ago. I also herniated a shoulder/neck muscle...the drs say this could be MS. They blood tests did not show any defiency except anemia, but I have Thalassemia, so no surprise on the anemia..

Well, this is turning into a novel, (and my wrists hurt,should have used my Dragon software lol) so I will close for now.

Re: New to forums

Posted: Thu Jun 06, 2013 9:21 pm
by KatWoman63
want2bike,

Thank you for the vegan support. I do my best to eat only organic, I make my own bread and I eat very little processed foods (veganaise, earth balance spread, GF pasta - I'm Italian so I just don't have it in me to give up pasta completely. haha). I'm learning a lot about all the toxins in our food supply, including animals. I know nature has provided us with all the nutrients we need. I'm not worried about not getting enough of something because I don't eat animals. In fact I really believe I eat a very healthy diet. Way healthier than most "healthy" people I know. The only nutrient I've ever been told I was deficient in in the past was D (I'm a CA transplant to the South so no surprise there) so after reading some things here I've begun taking 5000mg of D in addition to my usual 400mg twice daily that is included in my calcium pills. After reading that muscle twitching, cramping, jumping can be improved with magnesium, I've started taking that too and am already seeing improvement there. I take a multivitamin (used to take Rx prenatals until I lost my insurance) plus extra supplements of fish oil, beta carotene, and vit. C. I use flax seed in my baking and add it to my steal cut oats.

I think the only food I'm still concerned about is soy. I know it's another one that is highly GMO these days, but I have been eating "organic/no GMO" soy. I still need to do more research on the true health benefits of soy.

Thanks again,
Kat

Re: New to forums

Posted: Thu Jun 06, 2013 9:33 pm
by KatWoman63
CindiN,

It's nice to meat you. Looks like we have a lot in common. It's interesting that you used the term multiple autoimmune response disease. I also have a low thyroid and I've heard that's an autoimmune thing too. I recently read that, contrary to the many doctors out there who would like to believe multiple autoimmune diseases are rare, once a person has been diagnosed with an autoimmune disease, they're much more likely to get more of them. Crazy!

Anyway, I've been walking (very gingerly) for two days now. The ankle is getting better, but it feels...weird. I don't know how to describe it. It's like it's out of joint, but no. Like I can feel a pop sensation when the foot bends in stride, so I take tiny steps. It hurts still, of course. I really hope it doesn't take as long to heal as your has. I feel for you. I'm not good at staying seated and I had intended to do a lot of hiking this summer and work on a classic bicycle I bought last year and get riding that. We'll see.

I wish you well. I wish everyone well. Huge hugs to all.
Kat

Re: New to forums

Posted: Mon Jun 10, 2013 6:46 pm
by CyndiN
Katwoman63,

Oh I do hope you heal in time for your activities!! My ankles were broken a few times before this last one (abuse) so I think that contributed to the slow healing.