To Stellatum

Stellatum · 01-11-2013, 09:28 PM

Mike, believe me, I think of you when I think of MG running in families! If it weren't for your story, I would rule out CMS on the grounds that I'm much too old.

Re: potato chips: I thought all the potassium was in the skin of the potato, anyway.

I have this new theory that Doritos are really what will help me. They have the perfect balance of...um...disodium inosinate and disodium guanylate. Isn't it amazing how well I can spell those, even though there's not a bag of Doritos right next to my computer to copy off of?

Abby

Stellatum · 01-11-2013, 09:36 PM

You know, my symptoms have really changed over the three years I've had symptoms. In the early months, by far my biggest symptom was my weird gait. I was waddling and swinging from side to side, and having to take a step to the side to catch myself, because I was over-balancing continually. The neuro who diagnosed me said he'd seen hundreds of MG patients, and none of them walked like me. So I was thinking about limb-girdle dystrophies and such...but now I don't walk like that any more. I also haven't had problems with choking for, I don't know, maybe over a year. Gee, maybe I'm just better.

Abby

pingpongman · 01-11-2013, 10:17 PM

Abby my symtoms have changed too. For about 6 months now when I lay down it is like something collapes in my throat and can't breathe. Once I swallow it goes away. I also have a terrible time with my taste buds. After lunch there are a lot of days I can't taste a thing. I live in SC and we all drink sweet tea well it is now so sweet I can't stand it.
You know that neither of my Neuro's will even discuss CMS with me so I'm pretty sure they know nothing about it other than it exists.
Mike

bny806 · 01-11-2013, 11:27 PM

Funny you say that about your taste buds Mike.. I have the same issue.. it's almost like my tongue is numb, but my taste buds are actually irritated.. I have even had my tongue bleed on occasion since symptoms started... I always wonder if I have LEMS, which can cause symptoms like that I have heard

rach73 · 01-12-2013, 07:36 AM

Hi,

Your posts piqued my interest as you mentioned Marfans syndrome which is a hereditary connective tissue disorder and closely related to Ehlers Danlos Syndrome.

I'm sorry to hear that three of your kids are being closely watched by a cardio due to suspicions that your kids have this disorder. Have you or your husband been checked out for this as this has been passed down through the genes.

A simple check to see if you possibly have Marfans or Marfans hibitas (spl sorry not feeling great today. lots of drama last weekend where one of our dogs nearly died- all ok now) is to measure your wing span - cant remember what its proper name is. Put your arms out straight so they form a line from your shoulders horizontally and measure from your right finger tip across your chest to your left finger tip. This measurement should be bang on your height. If the measure is longer by an inch or more you could have marfans / marfans hibitas. Marfans hibitas can be found in people with Ehlers Danlos syndrome.

You probably know all this any way but just thought I would chip in as this is my neck of the woods lol!

Geode · 01-12-2013, 06:22 PM

Quote:

Originally Posted by AnnieB3

The reason I brought up potato chips is not due to the potassium but how potassium AND sodium work together in the body. A person shouldn't have too much sodium but if someone has a certain channelopathy, an imbalance of them might cause a problem. If . . . might . . . geez, it's all a crap shoot given that you don't know for 100% sure what's up.

My MG is better when I have a consistent dose of potassium, calcium and sodium throughout the day. But that's me, guys, so don't do anything unless you speak to doctors first!

Tatia, You snuck in there before I could post! I wasn't exactly offering up potato chips as a dietary choice or a treatment!

Only as a way to see if it helps. There aren't a lot of foods that have both potassium and sodium. It might be rather disgusting to put a little salt on a banana but you could do it. And, of course, organic potato chips (non-GMO) with low sodium are better.

Every disease state is different and foods do indeed have an effect on many of them. It's not only the type of food but the amount, the time it's eaten, with what other food - and drugs - and so many other variables. Makes me dizzy.

Potatoes are also an interesting choice due to the fact that they are nightshades. They do basically the same thing as Mestinon - to a far less degree. But since they are a food, they may have a better effect. Drugs are "unnatural" whereas food is natural. Though that doesn't mean foods can't harm you.

I hope you're doing well, Tatia. Thanks for challenging me. I doubt, BTW, that I'm brilliant. I think it's a matter of tenacity.

Celeste, my information regarding potato chips was specific to channelopathies; I had just wanted to clarify that since Annie had just mentioned to Abby about channelopathies in the potato chip paragraph.

Annie, I've been following about a dozen forums for several years, and you are probably the sharpest tack out of *all* the boxes. Since you had mentioned channelopathies in the potato chip paragraph, I just wanted to clarify to Abby and any other readers that potato chips might be a poor choice for experimenting if you have channelopathies in mind. For Abby to keep a more steady intake of both sodium and potassium to see if it helps is not a bad idea. I may take your suggestion on that trial for myself, as well.

Since insulin pressures potassium out of the bloodstream and into the cells, something with more carbohydrates (oranges, potatoes, bananas) can actually drop the serum potassium level before raising it. A salted avocado or some veggies with guacamole dip are a great choice for getting both potassium and sodium without the carbohydrate load.

southblues · 01-12-2013, 06:30 PM

But the potato chips taste better.

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