Was there a misdiagnosis? Possible Guillian-Barre Syndrome?

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Was there a misdiagnosis? Possible Guillian-Barre Syndrome?

Postby DoubleD84 » Thu Mar 06, 2014 9:12 am

Hi Everyone,

I've been hearing about the Guillain-Barre Syndrome in the media. Mostly from the possible link to the influenza immunization. After I read about it being a immuno-deficiency virus simliar to M.S. I started to look into it more.

My first (and only post) on this forum was my story from the beginning and anyone interested in the background should give it a read to understand what has happened. Since that post I have had one exacerbation after I was extremely sick from, what I will assume, was the flu bug. High fever and exploding from both ends for 2 days. After the flu subsided I had loss of muscle function on my right side which was which had happened quite often in the first two years.

http://www.thisisms.com/forum/introductions-f20/topic13192.html ((Reads like a narrative))

A timeline summary:

    2003 (Spring): right-side numbness/weakness; start of diagnosis
    2004: diagnosis; symptoms spanned from l'hermitte's sign, weakness, numbness, diplopia, optic neuritis
    2005: started Avonex; No Symptom's
    2009: possible relapse during the birth of my son (right side weakness) More than likely stress-related
    2010: Stopped taking Avonex at my own discretion
    2013: relapse after extreme case of the flu (right side weakness)

As I understand it, GBS' differs from MS in that it affects the PNS versus the CNS. My limited knowledge of this would conclude my symptoms could be PNS related. My main concern is that with the MRI's I have had in the past. I have quite a few very small lesions and a big one on the occipital lobe. Would this kill any possibility of it being GBS?

I have yet to talk to my GP/Neurologist about this since I want to learn more before I start an uneducated fuss. Any thoughts would be great and if you need some more information just let me know.

Thanks!

EDIT: I thought I should add that I have had full recovery from every relapse minus a very slight sensation loss on my right side. It is hardly noticeable.
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Re: Was there a misdiagnosis? Possible Guillian-Barre Syndro

Postby Scott1 » Thu Mar 06, 2014 12:41 pm

This may not be perfect but is a reasonable summary of the condition

http://indymedia.us/or/2009/04/37135.shtml

I would suggest you need to know more about your own state of health. JimmyLegs covers that stuff quite well. To me your problems sound metabolic but we can't tell unless you have a lot more information to pass on.

Regards
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Re: Was there a misdiagnosis? Possible Guillian-Barre Syndro

Postby DoubleD84 » Thu Mar 06, 2014 1:19 pm

Scott1 wrote:This may not be perfect but is a reasonable summary of the condition

http://indymedia.us/or/2009/04/37135.shtml

I would suggest you need to know more about your own state of health. JimmyLegs covers that stuff quite well. To me your problems sound metabolic but we can't tell unless you have a lot more information to pass on.

Regards



Thanks for the link Scott. That has quite a bit of info and the more I read its starting to narrow down to the miller fisher syndrome. I'm going to have to check my records and see if there were sickness' preceding the relapses. In the beginning, I was young and I had a steady flow of street drugs put into my system. Mostly MDMA/mushrooms/marijuana. I have always had an inkling this has contributed to the myriad of complications I had in the beginning. The first symptoms I had were the last days of that lifestyle fortunately.

Concerning my present state of health. I work 50-60 hours as a carpenter. It's fast paced and laborious. I work out a couple times a week and started into yoga a few times a month. I can run 5k in about 16 minutes (which hasn't happened much this winter). 6' tall, 170lbs. My diet is pretty clean. Minimal red meat, lots of veggies/fruits(as organic as I can afford). Consistently eating 3-4 meals a day. Sleep patterns are irregular but I try to get atleast 6 hours a night.

Is this the type of info I should include? Anything I'm missing?
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Re: Was there a misdiagnosis? Possible Guillian-Barre Syndro

Postby jimmylegs » Thu Mar 06, 2014 1:33 pm

hi :) re state of health, yes that's certainly a useful start :)

can you write up a typical three days of meals? two at work, one at home?
if so, include any meds, supplements and fluids that are in the picture?
be as specific as possible.

if you post or pm details, then we can look at whether your diet meets national recommendations for maintaining good health (ppl here often have a few glaring gaps that align neatly with nutrition issues typically seen in average ms patients).

then, you can work on redesign to address less than optimal health (usually involves exceeding daily recommendations designed for healthies)
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Re: Was there a misdiagnosis? Possible Guillian-Barre Syndro

Postby DoubleD84 » Thu Mar 06, 2014 2:12 pm

Breakfast: 3-4 poached eggs w/ toast (sprouted wheat), coffee and another large coffee on the way to work (1sugar/1cream)
Break: if lunch packed: plain vegetables no dressing, banana .... If I didn't pack lunch it's a sugar donut and coffee off the truck
Lunch: packed; spinach salad and a couple chicken or ham sandwiches. .. if not: Subway 12" roasted chicken sub or McD's filthy 1/4 lbr w/ large fries + ice tea
Break: more bananas/apple any salad I didn't eat at lunch/yogurt .. if not: skipped
Dinner: usually meat and potatoes. Chicken is the staple w/ potatoes and another veggie. Spaghetti w/ meat sauce
Snack: veggies, crackers/cheese Edit: thick peanut butter sandwiches

On the weekends, it doesn't really change. If anything I'll get busy and skip meals since I don't think to pack anything if I'm going to be out.

Supplements: sporadically I'll take: one-a-day multi, B100 Complex, 2000ui D3

No medications

Lots of spring water, maybe a glass of 2% milk or two a day. The only stain on the fluids is the amount of coffee I drink.

Can you shed some light on your interest into the dietary side of things?
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Re: Was there a misdiagnosis? Possible Guillian-Barre Syndro

Postby centenarian100 » Fri Mar 07, 2014 1:14 am

Hey double D.

Your history doesn't sound very consistent with GBS. Of note, there is a chronic form of this condition known as chronic inflammatory demyelinating polyneuropathy (CIDP) which can be relapsing. There are a lot of variants of the disease including miller-fisher variant (usually ataxia, ophthalmoplegia, areflexia), but your symptoms don't sound very consistent with this. optic neuritis and unilateral numbness sound like clear central nervous system demyelinating attacks. You also report central nervous system lesions on your MRI scan. GBS can cause enhancement of the nerve roots at times but generally no parenchymal lesions.

Of note, there is a condition called bickerstaff's encephalitis which is associated with the anti GQ1b antibody just like miller fisher variant AIDP, but it has a different presentation.

It seems that you have a relapsing central nervous system disease, possibly multiple sclerosis.

people sometimes report MS attacks after illnesses or vaccinations.

best of luck

-C
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Re: Was there a misdiagnosis? Possible Guillian-Barre Syndro

Postby DoubleD84 » Fri Mar 07, 2014 3:28 am

centenarian100 wrote:Hey double D.

Your history doesn't sound very consistent with GBS. Of note, there is a chronic form of this condition known as chronic inflammatory demyelinating polyneuropathy (CIDP) which can be relapsing. There are a lot of variants of the disease including miller-fisher variant (usually ataxia, ophthalmoplegia, areflexia), but your symptoms don't sound very consistent with this. optic neuritis and unilateral numbness sound like clear central nervous system demyelinating attacks. You also report central nervous system lesions on your MRI scan. GBS can cause enhancement of the nerve roots at times but generally no parenchymal lesions.

Of note, there is a condition called bickerstaff's encephalitis which is associated with the anti GQ1b antibody just like miller fisher variant AIDP, but it has a different presentation.

It seems that you have a relapsing central nervous system disease, possibly multiple sclerosis.

people sometimes report MS attacks after illnesses or vaccinations.

best of luck

-C


Thanks Centenarian, that clears it up. My concern that the lesions were present was a good indicator that it isn't GBS. I couldn't find anything specific but it's difficult to narrow a search when I don't fully understand the topic.
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Re: Was there a misdiagnosis? Possible Guillian-Barre Syndro

Postby jimmylegs » Fri Mar 07, 2014 8:36 am

hi again :) I'm generally interested in nutrition. it started out as an ms-related interest, then i realized how many nutrition problems were cross cutting across many different chronic disease categories. so, now i just focus on trying to define optimally healthy nutritional status.

so, when i look at your diet I'm looking for intake of good to excellent sources of specific nutrients, and minimal sources of trouble absorbing said nutrients.

so, there are a bunch of nutrients that are of concern in ms. specific to pain and fatigue, I'd look hard at magnesium and vitamin D3. your ability to absorb and utilize either may be hampered by low zinc.

when nutrients are chronically depleted, it can take a while to fix the problem with diet. but, you can try reallocating some of your food budget and see if it makes a difference.

here are some lists of healthy food choices for nutrients of concern for ms patients:

magnesium: http://www.whfoods.com/genpage.php?tnam ... #foodchart
for magnesium, when you feel bad aim for 600mg daily intake. if you feel ok, 400 will do
absorption/retention is hampered by coffee alcohol, physical activity (sweating) and stress in general
note that the spinach servings are in cooked servings, and that it takes 4c cooked spinach daily to achieve 600mg. so that's where the variety (and hopefully a passionate love for spanakopita and saag) come in ;)

vitamin d: http://www.whfoods.com/genpage.php?tnam ... #foodchart
a serving of salmon will keep you ticking over, but do ensure some sun time as often as possible during suitable weather. ie no sunscreen for the first 15 mins or so.

zinc: http://www.whfoods.com/genpage.php?tnam ... #foodchart
with zinc, aim for 40mg daily from food. gluten, phytates (eg from legumes), sugar, dairy, and alcohol all interfere with absorption/retention. that's by way of saying you're likely better off with non dairy animal sources. if you need to get some red meat, don't choose mainstream industrial feedlot beef. try to access some wild game if possible, or grass fed beef, goat, lamb, that kind of thing.
oysters are not on whfoods' zinc list, but are basically tops for zinc mgs per serving:
http://nutritiondata.self.com/foods-015 ... axCount=31

daily wheat bread and coffee might be an issue in your case. sprouted bread is much better than non, for sure! but if your diet is low in essential nutrients and then you throw in bread on a daily basis as well, your system might not be up to the challenge.

certain things that limit absorption/retention of essential nutrients may have important benefits in their own right, so you don't necessarily want to cut them altogether. but mixing it up, adding more variety to the diet can certainly be beneficial.

the above is incomplete regarding nutrients of concern for ms, but it's about all i have time for this morning :)

one follow up question - are you in the habit of eating any nuts and/or seeds? (other than in the pb?)
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Re: Was there a misdiagnosis? Possible Guillian-Barre Syndro

Postby DoubleD84 » Fri Mar 07, 2014 7:15 pm

I think it's hard ascertain a typical diet from a couple days. We're on the verge of transitioning into a raw food diet. I've read your post about blood testing and I'm very curious to use this as an experiment to see what the numbers are like during the transition.

As for your question about nuts. I eat mostly raw pumpkin seeds, cashews, raw sunflower. There really isn't anything I don't eat. My diet spectrum has been very broad until the last couple months. We have just moved on the weekend and up to this point it has been very hectic. Having three kids and being away from home at least 12 hours every day doesn't leave much time for exploration.

What's your take on the raw food movement? There's a lot of positive information regarding an assortment of diseases. It is an extreme diet change though. I attempted to go 100% raw a couple years ago but it only lasted a couple weeks. I have a very fast metabolism and I just couldn't eat enough.
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Re: Was there a misdiagnosis? Possible Guillian-Barre Syndro

Postby jimmylegs » Fri Mar 07, 2014 8:07 pm

2 work days and one home day is a trick I picked up from a dietitian many yrs ago at a hospital clinic. it does give a good snapshot and can help identify any glaring problems. also provides a sort of baseline from which you can run a preliminary intake assessment.
so, if you go through the mag, d and zn links and find that your diet meets the targets, awesome!
and if it doesn't, you have a list of options right there with measurements. easy peasy.
the nuts sound like great choices. couldn't hurt to track their contribution to zinc and mag status.

the blood work is key of course. you never know what sneaky underlying issues could be messing with the total picture.

I went raw for maybe a month or so?? many many many years back. I certainly think raw foods are very important, but I've learned not to take things to extremes.
here are some decent guidelines for cooking just enough, not too much: http://www.whfoods.com/genpage.php?tnam ... vegetables
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Re: Was there a misdiagnosis? Possible Guillian-Barre Syndro

Postby NHE » Sat Mar 08, 2014 7:05 am

Dr. Joel Fuhrman, author of Eat to Live, discusses raw foods.

diet-f9/topic19892.html#p191461
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