hello

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hello

Postby antifreeze » Wed Aug 27, 2008 11:28 pm

I was just diagnosed in July 2008. In hindsight my first obvious episode was 1986. A neck injury in 1991 and related surgery in 2001 became the catch-all excuse for my quirky symptoms. Well, docs also accused me of being an alcoholic – in denial, or trying to scam workers comp, or having body issue problems (like what 20th century woman raised in the US doesn’t?). Until I woke up one morning and couldn’t see out of my right eye. That’s a little harder to blame on 16-year-old whiplash.

Anyways, I am not sure what questions to ask here, because my real question is unanswerable. What is going to happen to me?

I find it funny. I’m not much of a joiner, but I here I find a whole tribe, and not much question about whether I belong.
You cannot make a crab walk straight - aristophanes
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Postby jimmylegs » Thu Aug 28, 2008 5:00 am

sounds like you had a rough road to dx, anti! yep this is where the cool kids hang out, welcome ;) i remember that what's-going-to-happen-to-me time. scary stuff. you've got a good resource here for being proactive and making sure that you live out the best case scenario!
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Re: hello

Postby CureOrBust » Thu Aug 28, 2008 5:14 am

antifreeze wrote:Anyways, I am not sure what questions to ask here, because my real question is unanswerable. What is going to happen to me?
One thing I like about this site, is it helps to answers the question for me of "what am I going to do to take some control of 'What is going to happen to me'"

antifreeze wrote:I’m not much of a joiner, but I here I find a whole tribe, and not much question about whether I belong.
I'm really not a "joiner", and I wish none of us were here. But welcome anyway
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Postby antifreeze » Sat Aug 30, 2008 9:34 pm

Okay, now for a (much!) longer post…

Hello jimmylegs and CureOrBust! Thanks for your replies, especially as I do have so many questions for you and others on this site. I was trying to keep my first email short, because my first attempts were confused and so twisted with history and questions. I was just diagnosed but I’ve got a long history. Anyways, here I am, out of my cave. And trying to figure out what to do next.

Geez, sorry I couldn’t make this any shorter:

I’ve made numerous diet and lifestyle changes, in attempts to control symptoms or at least maintain the energy to do the things I want to do. I turned vegetarian in 1982 in college in order to help me stay awake at night so I could study, and also to fix some digestion problems. It helped a bit with digestion issues, it helped a LOT with fatigue. I gave up gluten in 1996 after a bout with Bell’s palsy, that in hindsight was not. In addition to losing hearing in my right ear, losing strength in my neck so I couldn’t hold my head up, and waking up in the mornings with legs that felt like I had run marathons all night (and all of these symptoms denied by the doc, I say I feel this and he said I didn’t?), I had the classic half-facial paralysis. My non-chewing diet for the next few months happened to be gluten free. I was in the middle of writing my dissertation, not able to swim which is my antidote to everything, scared because I had no health insurance, with at least the facial paralysis recognized and diagnosed, and I felt the BEST and most energetic I had ever felt, and with fewer digestion problems. It has been such a no-brainer since, even though I desperately miss beer and pizza, I have never been tempted to eat it again as the loss of fatigue was so miraculous. I still had some digestion problems, though, and while getting tested for the celiac gene (nope, I don’t have one of the three problematic ones, but yes my gluten problems are real) the doc said celiacs may also have problems with fat malabsorption, lactose intolerance, and fructose malabsorption. When the celiac gene test came up “negative” he wasn’t interested in pursuing the other three factors, so I did it on my own. I don’t feel that fat and lactose are problems, but fructose is a big yes. I am now just careful to eat it later in the day, not too much, and after meals. And most of my digestion problems are gone.

As for vitamins, playing with them over the past five years I have found each of the following definitely affecting me for the better: calcium/magnesium/zinc/D, extra magnesium, fish oil, flaxseed oil, and especially mega vitamin Bs.

Everyday is a balancing act between my daily activities and my fatigue. I think I do it to help me feel capable and not just for the physical boost. I do modified yoga (for 10 years), swim (lifetime), jog (off and on), and surf. All of this is to try to preserve is my ability to work and surf. But with increasing memory problems, balance issues, coordination, problems and significant FATIGUE, I have learned to let go a bit, and lately to let go a lot. I’ve spent weeks on the couch after work. I’ve learned that it doesn’t matter if I swam 4000 yards two days ago, if all I can do today is 4 lengths, then do it and enjoy the shower. And after time on the sofa, the best way to figure out if I can jog today is to suit up, walk to the beach, try a few steps and see how far I can go. And if I can’t, then turn around and try again tomorrow. If I can get off the couch.

One thing that helps me, and I just experienced it again this week, is immersing in seawater. I live near the beach and swim and surf in the ocean, but mostly in the winter when the waves are best. Spring and summer have always been my toughest months, I think now, because I am not in saltwater as often. It’s not the sun, because in San Francisco I’m encased in neoprene, sunblock, and the ever lurking fog. It’s not the exercise because I improve even after no-wave sessions where I spend an hour just bobbing. And it’s not the cold water because it happens even in Hawaii where I overheat in the water. It’s pretty profound the difference after just three days back in the ocean.
I wonder what macro- or micro-nutrient I am lacking, and my body can scarf all it wants as I bob in the ocean?

Anyways, since my ms diagnosis I’ve added extra vitamin D, Copaxone, and a fledgling mediation practice (I can’t tell which is harder, searching for lost words/concepts or letting go of existing ones!). Before I add more changes I want to give my copaxone regimen some time. That’s the scientist in me trying the reductionist approach.

But I am slipping, and soon I need to start thinking about what else to try. At the moment I don’t know where to even start with nutrition, vitamin supplements, and other alternative apporaches. This website, and the amount of experience each of you have is overwhelming, in a good way, but I don’t know where to start.

So any advice on next steps would be much appreciated.

Judith
You cannot make a crab walk straight - aristophanes
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Postby cheerleader » Sat Aug 30, 2008 10:49 pm

Welcome, Judith-
I loved living in San Fran, what a wonderful city- and it sounds like you are taking advantage of it; walking by the ocean, taking yoga classes, swimming and surfing. You are doing everything right. What does the future hold for you? Let us know how tomorrow goes.

I'm sorry it took so long for your dx. Docs can make you feel like you're the crazy one. Now that you have a dx and know what's up with your body, you can take control. Copaxone has been great for my husband, as has the Swank diet. I also came up with a supplement plan for him.

Yeah, you've now joined quite a club. Welcome. Glad you stepped out of the cave.
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby antifreeze » Sat Aug 30, 2008 11:18 pm

Thanks AC.

Since I'm in Maui on vacation, postponed for 8 months while trying to get my eye problem diagnosed (an atypical version of optic neuritis, and eventually MS), I can tell you that my immediate tomorrow will include a swim with turtles, spotted eagle rays, and hopefully not the white-tipped reef shark that checked me out today, 3 times. I swam back in after his third drive-by, I didn't feel invisible enough out there.

I agree with your treatment list in your signature, laughter is my favorite treatment!

Judith
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Postby Loobie » Sun Aug 31, 2008 4:21 am

Hey Judith,

First off, welcome! Second, could you describe your atypical eye issues. I have the Uthoff's form of ON where I have never gotten rid of my ON like what's typical, but I also only get it when heated. When things flare up I can get it just by getting up from a seated position, but for the most part it comes and goes every day as the temp. goes. Is yours anything like that? Like cheer said, you really do seem to be trying a lot of good things in terms of overall wellness, which is the place to start. I hope it gets easier for you and for God's sake, don't get bit!
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Postby antifreeze » Sun Aug 31, 2008 5:54 pm

Hello Loobie,

Thanks for the welcome. About my optic neuritis, I am guessing that it is atypical since it took 10 opthamologists, 4 months, and an MRI looking for brain tumors before they stumbled across a a couple of lesions in my brain (but nothing on my optic nerve). Granted, it didn't help that there was no pain, and I was stumped when trying to describe what I saw through my eye.

I couldn't read at all for the first two weeks, in hindsight I am not sure whether the problem was structural or cognitive. My eye got worse a couple diopters. And as things improved I developed the Uthoff response that helped me recognize loss of contrast sensitivity. Again in hindsight, I don't think I had Uthoff's for the first several months because i think the nerve was in constant distress. The first 9 opthamologists did diagnose several significant muscular weaknesses, my eyes didn't track together, my right eye wandered, etc.

And 9 months later I still have all of those symptoms to a lesser degree, and like you they are worse when I move, overheat, take a hot shower, etc. Heat does me in, with all my MS issues. So Hawaii in summer is a challenge, but worth it!

I'm curious how your case is "atypical"? The lack of pain? The duration?

Judith

p.s. no shark today, just lots of colorful fish and blue blue water.
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