New here. Not new to MS.

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New here. Not new to MS.

Postby SoSoonOld » Tue Jul 05, 2011 3:12 pm

Hi! I just signed on to this site.

My symptoms first appeared in 1987. I was diagnosed in 1996. I have the primary progressive kind of MS that has so far been limited to a gradual decline in my ability to walk, plus the usual fatigue and heat sensitivity. I'm on no drugs. (Any that I tried years ago simply exchanged one set of problems for another.) I've been a low carber for several years. (I feel right at home on this site, which looks a lot like the Low Carb Cafe. :D) My low carb is all whole, natural foods -- no substitute products, artificial sweeteners, etc. Additionally, I went gluten free a couple of years ago. Can't hurt; might help.

That's about it. Looking forward to meeting you all.
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Postby InHislove » Thu Jul 21, 2011 10:51 pm

Hi SoSoonOld,

Diet is important for almost anything! That gluten eh! I'm sorry to hear that your ability to walk is declining.

I'm from Westren Canada, 39 years, wife and mother of 3, 2 at home plus add a new puppy and a father in law *lol* I have not been diagnosed with MS, doctor is suspecting it and I'm apparently on a long road of testing... yuk! I thought I'd join (the day of was feeling very defeated and cranky) for support and suggestions.

Where are you from?

anyways nice to meet you...
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Postby SoSoonOld » Fri Jul 22, 2011 9:08 am

Hi, InHisLove! Welcome, from one newbie to another.

I'm from US, near Lake Michigan.

I wish you luck with this diagnosis thing. I used to be on another forum where they called that "limbo land." They were having symptoms, but were awaiting a definitive diagnosis.

I was about 36 when the very first symptoms appeared. For a long time, I didn't go to a doctor. My symptoms would often go away completely after I'd had a good nap, and I figured I'd just get a "pre-menopausal female" diagnosis, anyway. Once things had progressed to the point that I thought a doctor would actually find something, the diagnosis was quick. But it sure was a shocker, because I hadn't considered the possibility.

Good luck with your new puppy. I had four beautiful cats at the time I was diagnosed, but they're all gone now. I didn't get any more. I'd be fine with day-to-day care -- the feeing and the litterbox. But if they'd get sick, I wouldn't be able to manage caring for them.

Just remember, a certain amount of depression and crankiness are a pretty normal response. Keep in touch and keep us posted.
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Postby InHislove » Fri Jul 22, 2011 3:11 pm

thanks! :D

The Perimenopause thing crossed my mind until I saw a video saying don't accept that diagnosis - premenopause does not cause nerve pain, numbness and tingling! Ok I thought... guess that one's out the window. I even suggested to my doctor and he poopooed it right away.

The reason I thought it was to do with menopause is because my symptoms seem worse from hormones. Have you noticed that?:?

ttyl
8)
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Postby desmalia » Fri Jul 22, 2011 5:40 pm

Hiya ladies, thought I'd pop my head in!

I really have to wonder how much hormones do play a part in this whole thing, especially since more women than men seem to be diagnosed with MS. As I was just saying to IHL in my intro thread, I think they could be very much related in my case. For years I've blamed my hormones for quite a number of health problems. But now I think it's worth looking into the possibility that the MS is related to it in some form. Not that anything can be done about it either way, but it's interesting none the less!

I'm very interested in learning more about your low carb lifestyle, SSO. I've done Atkins in the past and have a pretty good handle on how and why it works. Problem being I'm a total carb addict, so it's a tremendous discipline for me to stick with. The longest I did was about a year and a half, but I continued with very tight restrictions because I would gain weight at more than about 30 carbs/day. I'm looking into going low carb again, and for good, but not specifically Atkins. More along the lines of what you mentioned. No processed, packaged treats, etc. Just good clean eating that includes skipping starches, sugars, and generally the higher-carb fruits and veggies. This time it's not about weight (though I'd be quite happy to drop a few pounds!). It's about eating healthy and taking care of myself. I get low blood sugar if I don't get enough protein and fat every few hours, so low carb works better for me than low fat.

What kinds of foods are staples for you these days? Do you use any sweeteners like stevia at all? Are you counting carbs or following a general list?
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Postby SoSoonOld » Fri Jul 22, 2011 7:40 pm

Hi, Desmalia,

Yes, it is interesting that more women than men get MS. Is it because of hormones? Or because we're always dieting and depriving our bodies of some necessary nutrition? :-)

Anyway, my low-carb lifestyle has been generally 50-100 grams of protein and 50-100 grams of net carbs, with lots of butter, cream, coconut oil, some olive oil. I guess I'm doing something right because I recently weighed myself (something I bother to do about 3 times a year) and discovered I'm down 15 pounds from my highest point. It's been imperceptibly slow, but that's fine.

I've tried Atkins and other very low-carb programs, but I've always given up in lot less time than the year and a half you managed. (I'm impressed.) I've found the Lutz/Allen Life Without Bread and Barry Groves's books to be a good middle of the road approach.

Currently, I'm using my own version of an early-1940s USDA program. I have a template that I use for planning/keeping track each day. It includes 3 servings of eggs, meat or fish; 3 servings of dairy (full fat); 1-2 servings of non-starchy vegetables; a serving of fruit; 1 serving of a starchy vegetable; 1 serving of grain (such as a slice of bread, a small serving of rice, or 9 gluten free crackers); plus some coconut in some form, and a bit of chocolate. And, as I mentioned above, lots of butter, etc.

I keep track only of carb counts. I've been at this low-carb thing for so long, I no longer weigh and measure. I don't stress about filling in my template exactly each day. Except for some stevia in my yogurt, most of what I eat is real food.

I guess I've gone on here. Hope this is useful.

Best wishes!
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Postby desmalia » Sun Jul 24, 2011 5:20 pm

That sounds great! Lots of options for you to keep it interesting. Looks like you're eating clean too, which I think is vital. I have to make a choice if I'm going to do this. When I don't eat low carb I can't have eggs or dairy due to intolerance. When I do cut out all starches and sugars I can have eggs and low carb/high fat dairy. So I couldn't quite do what you are with the starches, but could have higher carb veggies and possibly a pretty decent variety of fruit. I'm also looking into unpasteurized cheeses and organic free range chicken eggs. I'm not jumping into anything. I want all my research sorted out first so I know what I'll be doing and that I can afford to live that way. I appreciate your feedback!
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Postby SoSoonOld » Sun Jul 24, 2011 7:49 pm

You're welcome, desmalia. The grains definitely aren't crucial for me, and I often have two servings from the "potatoes" category and skip the grains altogether. The original USDA plan says "potatoes or other vegetables," so there are also things like carrots, beets, sweet potatoes, parsnips, etc., that I consider part of the "potato" category. If I do have grains, I make sure they're gluten free. As long as things are gluten free, I don't have any digestion problems.

I get raw milk cheeses from a big special grocery store when I can. But I also eat the regular stuff. We live a couple of miles from a small hobby farm, so we feast on duck eggs and chicken eggs from a variety of interesting breeds. On the occasions we have to use regular commercial chicken eggs, the difference is readily apparent!

Best wishes,
Marilyn
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The Newb.

Postby Spirals6 » Thu Jul 28, 2011 2:42 pm

New to this forum....most definitely not new to MS.

I'm going on 6 years of living with RRMS. Diagnosed 2 days after Christmas in 2005 with optic neuritis being my trigger. Talk about scary! I went blind in my right eye in a matter of 4 days. Only nice thing about all that, I didn't have to go through years of testing to see what my issue was.

The meds i've tried are Avonex (the WORST thing ever created) and Tysabri; and still currently on Tysabri! For the most part, I love it.

I have had almost every symptom you could think of with the exception of losing the ability to walk (knock on wood). The most recent devastation was becoming pregnant and being so sick with migraines that I had to terminate the pregnancy. Immediately following the termination was probably one of the worst exacerbation's I have had yet with my MRI showing "many new lesions" caused by the pregnancy.

Horrible, I know.

So...there's a little background on the newb.

It's nice to have found a group that I can relate to :)
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