Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Joe
Scrambled-eggs often work well. Ground turkey is great too.
I buy frozen ground turkey, much cheaper than fresh.
Take a good-quality vitamin, maybe in applesauce.
Grind the vitamin up, with an inexpensive wooden mortar-and-pestle, if that helps.
Pharmacy-chains stock a good range of inexpensive probiotics.
One probiotic a day - can help a lot.
Well-cooked veggies, even blended into soups - are another good idea. Soft, good-quality canned fruits - can make a nice break.
To supplement your body's need for protein? Try ''Pure Protein 35g Of Protein'' - available in many stores. (Wahlgreens and Trader Joe's - are just two examples.) It's a pre-mixed protein drink. My local Trader Joe's sells a can for $2.40.
(I like French Vanilla, but any flavor will do.)
You need about 60g of protein a day. Important - to keep that up.
(Men need slightly more protein.) The ''Pure Protein'' has no lactose, but does contain some milk products.
One chewable Lactaid - takes care of that.
To save money, I drink one can of Pure Protein a day.
Diluted 50-percent with water. (It's too thick a liquid for me, straight out of the can.)
All of these products - are essential for me. And I have my Neuro's approval, on it all. It may sound like a lot of expense - but nope!
Since I had to start using all these items? Our grocery-bill has dropped considerably! (No more empty calories or fats. No cakes, cookies, ice cream. I don't even miss the stuff, anymore.)
** Carly, this could be MG, it could be something unrelated.
Make sure your GI doctor and your Neuro - work together on this.
- Ross
Good luck to you
My favorite: V-8 Fusion Light, Strawberry-Banana!
I also dilute the V-8, 50-percent with water.
But that's just me.
Vega One - and 3 or 4 others. My GI-system didn't like them much.
Probably? Lack of proper pre-biotics and pro-biotics in my system.
Plus? The constant cleaning of blenders to mix the powdered products? Wasn't very appealing, not over the long haul.
(... men ...)
If your system can handle a powdered protein supplement? Definitely a less expensive choice. But not as inexpensive, as you might think. I actually took a calculator to the store. It can take many scoops of powder, to equal other liquid products.
I still miss my old Jevity 1.2, which was a prescription item, paid for by my insurance. But when I became able to eat by mouth again, the amount of supplement I required - fell below a level that would be covered by insurance.
Which was just as well. The supplier of the Jevity - was a pain.
They would bill the insurance: $8000 a month, for the Jevity!
The insurance would approve: $800, which the supplier accepted as payment in full.
What's a poor guy to think?
I've given up - on the OTC probiotics.
They seem to be aggravating, and not helping the situation.
Joe: love the crock-pot idea!
Firing up ours - right now!
- Ross
We seem to be in the same proverbial boat right now so will share some ideas. I did just have another esophogeal motility study which has worsened in the past few months and also a swallow study that was highly abnormal. I start voice and swallow therapy Monday and will be getting a session with a nutritionist as well.
For now I am not supposed to eat more then two tablespoons of soft foods at a time and then take time to clear my esophagus with liquid. The soft foods have to be pureed. I am finding cottage cheese a good source of protein for me and last night I pureed cooked peas to go with. A boiled egg that has been completely mashed with a fork and mixed with mayo and paprika works for me. I am not to have any meats that do not have gravy with them so you can see why I asked for a nutritionist. I do need my bran each day and find the flakes soaked in milk (you could use almond milk) seem to kind of go down ok. I still cough. Bananas are working ok and I can manage 1/2 of one at a time.
I am not diabetic but am sensitive to carbs so I use Enterex Diabetic drink that contains a fair amt. of protein by mixing it with two cups of ice in a blender so it is thick like a shake and then stirring in a bit of cool whip for creaminess. You can get these at WalMart in groups of 6 I think.
I am thinking carrots and string beans can be pureed after cooking and potatoes mashed. Oatmeal and cream of wheat of course would work ok for getting down. I have trouble with applesauce so avoid it.
Right now I am using a food processor for pureeing but may need to get something more functional at some point. I do think we have a meat grinder we have never used in the upper cupboard and that may be down for turkey soon.
i may learn some new ideas after getting an appt. with the nutritionist and will share them if you like. Marie
I need salt for my POTS, but it's a no no for my intracranial hypertension. Add that to my having to take Lasix daily and you get the picture. I'm a walking medical contradiction right now. Having problems with the gut is just the cherry on top of everything else.
I'm scheduled for another endoscopy and colonoscopy this month.
Fun, fun!! It never seems to end!
I'm VERY grateful for you guys and your wonderful advice and encouragement. I don't feel alone anymore.
THANK you all!!
Carly
I sure understand the quandaries. I have to have salt and water to keep BP up high enough....but also have surges of high BP due to nor epi surges and lack of pathways to baroreceptors due to neuropathy. I get edema from left diastolic heart failure as well as having to use the salt to keep BP high enough. Choosing foods when I also have post prandial low BP has been interesting. I seem really sensitive to carbs.Some days I just feel a walking contradiction....trying to keep all in balance.
I hope you are able to find a diet that works for you. I am going through the same right now and looking for ideas. I try to keep the dairy lower....and protein higher....but it is getting challenging. Am hoping the dietitian has some more ideas. Marie
Milk, ice cream, yogurt - they would cause phlegm which I couldn't cough up & choke on. This was also a problem for my daughter when she was born. Feeding time would require feed her a little, then suction her out. This would take up to 2 hours.
Good luck.