[loisba]

Things seem to be kinda slow on the forum. So just thought I'd ask how everyone is doing?
I'm trying to cope with my recently discovered gluten sensitivity. The first week I went gluten free I had a tremendous surge in energy, which made me realize that at least some of the fatigue I'd been blaming on the MG was probably from the gluten. This last week, though, I've had a bit more fatigue, and noticed during the same time period I had an increase in joint aches. I sure hope I'm not starting on something else, like RA or Lupus! Hopefully it was nothing but the MG coupled with my imagination that was making me more conscious of normal aches and pains. Does that make sense? Brain fog has seriously got me tonight.
Anyway, how's everyone?
Hugs,

[turner]

Was waiting for you to come and share your story about going gluten free.
I'm so glad that it has shown some improvement with your energy levels.
Where you able to cut out some mestinon ??
I was able to stop it completly, and now only take it when I'm really, really bad. Hopefully those days are far, far apart. :icon_wink:
I don't think that people really get it, that simply changing your diet can make such a impact on our lives. We are indeed what we eat.

I have been gluten free since July 1 of last year. I noticed improvements the first 3 days, but then I started to recognize that there where other things in my diet that were doing similar things to me. ie. soy and milk. Soy espeacial made me feel just like the gluten. Sore joints and muscles along with the fatigue, I now think that corn has to go, unfortunalty I'm finding this the hardest to give up. Corn is in almost everything too!!!!!

I just recently had a scoping of my stomach and small intestine, to take biopsy and have a look see. The dr was very nice and seemed genuine in helping me with my neuro issues, I don't get to see him again till March, apparently hes a very busy man. He seems to be "up to speed" on issues other then celiac disease, my blood test also came back negitive. I won't know my biopsy results for a month or so, BC is so slow with these kind of testing, oh well.

Anyways lois thats my news, hope that we can inspire other people to look at there diet and see if maybe they might bennifit by doing some changes. After all gluten free is not all that bad, heck its even better for ya.!!!! Trust me nobody
Take care, Patricia

[loisba]

Patricia, I still take basically the same dose of Mestinon. The difference is that before going GF, I would take the Mesty and still be horribly fatigued. I thought the MG was worsening. Since GF I can see that the MG is controlled pretty well by the Mesty, as long as I pace myself, etc. The extra fatigue was all gluten induced. But one of the biggest differences for me is that the bathroom no longer rules my life. I was hunting a bathroom up to 10 times a day, and when I had to go, I had to go! Plus a lot of diarrhea, lot of gas, lot of cramping, lot of bloating. That is all gone. I don't do milk, found out several years ago I'm lactose intolerant.
I don't know what I would do if I couldn't eat soy or corn. I depend on the soy for my milk, and corn is basically my bread. (Corn tortillas, mostly, also tamale-type breading, and gorditas). I've just got to learn to bake GF, though. My last poor attempt at a loaf turned out as heavy as a doorstop!

If these joint pains continue, I may have to look into eliminating other foods, unless it does turn out to be some type of arthritis. It's weird: I'll be more or less fine, then notice that my hands are starting to ache. I'll realize that my hands from the knuckles down look like they've been dipped in hot water, just really red. And the skin always really dry. Then my wrists will start to ache, then my elbows, then my shoulders. And the fatigue will increase along with the aching. After a couple of hours, it all more or less fades away.
Any ideas?
Hugs,

[turner]

Hi lois, sorry about that loaf of bread. Its a real bummer when your hard work turns into door stops, had some hockey pucks not to long ago, teheee.
You discribed how I feel everyday. I constantly ache all over, lots of muscle pain and joint pain too. And I still have the fatigue, not half as bad as before. Someone suggested the corn does the same thing to them. This is not a good thing, feel really reluctant to get the corn out, its like I said in alot of things.
You might try some EFA for your dry skin, and that also helps with arthritis type pain, also vit D, espeacialy if you don't get outside to much. You don't drink milk and thats the only place I know of that its fortified. Where I live in Canada its pretty cold, so going outside is out of the question for me.
I also find that when I'm in the cold my muscle weakness increases, just like in the summer when its too hot. Does this happen to you to??
Well tomorrow I'm trying the flax bread, this will be my first attempt for bread thats like regular bread. My bannana bread is awsome pm me if ya want the reciepe. Take care, Patricia

[loisba]

Living in Tennessee, I get outside quite a bit. Plus I take a daily multi vitamin. I'll try your suggestion for the dry skin.
I'm currently working on the flax bread. It is in the oven, and looking good. Of course, I forgot to put the salt in, but I figure I can sprinkle a little salt on each slice, assuming it comes out sliceable. My attempts so far have been pretty grim, except for my cookies.
Hugs,

[Gabe]

Hi Lois,
I haven't posted much - holiday blues I guess...

I had an appoinment yesterday with the Nurse Practioner at the neurologists office. I had my thymectomy in March and according to the neuro's textbook I should be in remission by now (they forgot to tell him that everyone is different and that while 50% of people go into remission the first year that means 50% don't)...so he thinks that I don't need IVIg anymore and that I should cut back on my Mestinon - take 60mg 3x a day.

If only I were in a remission his advice would be great. Unfortunately, my body is not responding on his timeline. I am two and a half weeks out from IVIg now, I wake up gagging seeral times a night on saliva, have food come out my nose when I eat and sound like my lungs are full of fluid afer I eat. My speech is slurred, my arms feel like they weigh 1000 pounds and walking up a flight of stairs feels a bit like Mount Everest. Meanwhile I am supposed to work full-time and take care of my family...it isn't working for me.

I asked the nurse what the plan was and she said that I should come back in two weeks and they will assess me then to see if things have worsened. So I guess I'll muddle through and see what joys await me next week. Sorry to vent.
Gabe

[loisba]

Poor Baby! I think they should invite a panel of actual myasthenics to guest speak at least once during every neuro's medical education. We could give 'em an earful, couldn't we?!
Well, look on the bright side, at least you are contributing to your neuro's continuing education. The next MGer he treats may benefit from his experiences with you!
Keep us posted on how it goes. I'll be thinking of you.
Hugs,

[Woodfire]

sorry to hear about the poor NP, I've had a similar experience, when she told me i needed my thyroid out, and not my thymus. she also told me mestinon is the only treatment. that wasn't a fun visit. i see the neuro only now, no more NP.

hope you get through okay

kate

[Gabe]

Thanks for the encouragement Lois and Kate..I'll be ok, just whining this week!
Gabe

[loisba]

No problem, Gabe, you rate! Whine all you want!
I had a kinda not so good day myself today. Got through the day, at least, but a lot more fatigue than I had been experiencing. Then I realized I had forgotten to take my 1/2 Timespan last night. It really does make a difference. I tire quicker and easier in the morning when I'm not starting the day with some Mestinon already on board.
I had been taking a whole Timespan for awhile, then started to wake up at night with tummy cramps, so went back to breaking the Timespan. The 1/2 works pretty good for me. Gives me just enough to get through the night fine, plus get a little bit of a jump on the next day.
I've already taken my bedtime dose so as not to forget it tonight.
Hugs,