[Brennan068]

Hello everybody,

I know most of you with food/weight issues here are experiencing the side-effects of steroids with weight gain and no problems with eating; I'm on the other side of the issue. I'm not on any steroids, taking Mestinon 60mg 3-4 per day (3 prescribed with a discretionary one if I feel I need it).

My MG is localized to my neck/throat/jaw. I had some ptosis which has nearly completely cleared up since my thymectomy. I had severe paralysis of my tongue which caused extreme garbling of my speaking and paralysis of the left side of my throat causing extreme difficulty swallowing. The speach issue has resolved itself (not sure if that's due to the thymectomy or the mestinon). Unfortunately, the swallowing has not yet. I just finished radiation therapy two weeks ago and the fatigue from that is just now starting to go away; I hope the eating issue resolves itself once I'm not being constantly worn down.

That being said, how do you who experience difficulty swallowing get enough nutrients into your bodies? What do you tend to eat that you find easy/easier to get down? I do take boost/ensure to top up most days but am getting really sick of it and tired of drinking my meals.

Cheers,

Brian.

[erinhermes]

Swallowing, eating and breathing were the last things to go for me. I don't know how you do it - I was sooooooo scared @ that point!

Maybe, maybe, maybe you need to be on meds - steroids or IV IG or plasamaphoresis if you are too weak to eat. I mean, you can't really get stronger unless you have enough nourishment. It sounds like the Mestinon isn't enough for you and you need more meds/anther neuro........

My neuro made me go to the hospital for IV's full of fluids, IV IG and blood b/c I was too weak to swallow (or do anythig else for that matter) and started me on steroids while I there - they have to do that b/c Mestinon and steroids can SOMETIMES cause problems when you first take them together. I did not know that until a friend of mine who owns edrugsearch.com pointed out a boatload of information regarding Mestinon and Prednisone......

Where are you living? I am truly, truly sorry to hear that you are having these problems and will keep you in my thoughts and prayers....

Hang in there and get in touch with your neuro quick!

Take care!
Erin

[erinhermes]

One last question - why did you have radation therapy?

Just curious..........
Erin

Originally Posted by Brennan068

Hello everybody,

I know most of you with food/weight issues here are experiencing the side-effects of steroids with weight gain and no problems with eating; I'm on the other side of the issue. I'm not on any steroids, taking Mestinon 60mg 3-4 per day (3 prescribed with a discretionary one if I feel I need it).

My MG is localized to my neck/throat/jaw. I had some ptosis which has nearly completely cleared up since my thymectomy. I had severe paralysis of my tongue which caused extreme garbling of my speaking and paralysis of the left side of my throat causing extreme difficulty swallowing. The speach issue has resolved itself (not sure if that's due to the thymectomy or the mestinon). Unfortunately, the swallowing has not yet. I just finished radiation therapy two weeks ago and the fatigue from that is just now starting to go away; I hope the eating issue resolves itself once I'm not being constantly worn down.

That being said, how do you who experience difficulty swallowing get enough nutrients into your bodies? What do you tend to eat that you find easy/easier to get down? I do take boost/ensure to top up most days but am getting really sick of it and tired of drinking my meals.

Cheers,

Brian.

[erinhermes]

When I was able to swallow a teeny tiny bit, I ate chips and dip. As for the Ensure, I hope t never see/smell that stuff again! I was down to only bring able to drink 1 or 2 a day if I was lucky, so even the commercials make me sick to my stomach..............

Baked lays and dip worked for me........

Hang in there! Try and maintain your strength!

Erin

[MissyGirl]

Do you have MuSK MG? I know that mainly affects the muscles from the neck up. That's the kind of MG I have and I have had MUCHO problems with swallowing over the years.

As far as getting in nutrients---slow and steady wins the race. Ensure is OK, but I preferred Boost. LOL Carnation instant breakfast is also pretty good. Chips and dip are also pretty easy for me to get down as well. Anything that didn't take lots of pushing around with the tongue worked. Some winners:

1. Potato or other cream soup (you'll hate soup forever---WARNING)

2. Mac and cheese. (I like Stouffer's brand)

3. Smoothies

4. Fresh green juice drinks. I have a juicer and juice up cucumber, celery, lettuce, sprouts, apples, etc. I've found the consistency to be very agreeable when I have severe dysphagia.

5. Yogurt, cottage cheese and fruit, etc.

6. Mashed potatoes and gravy. If you eat meat, you can mince it and add to the mix.

7. Soft scrambled eggs.

Dehydration is a big worry. Constantly sip on water through the day.

Hope some of this helps.

Missy

[neutro]

I had that swallowing problem ( plus chewing…) for several months.
The advises my nutritionist gave me were as follows:
eat less at each meal but eat more often (5 times a day) and eat more caloric food…
There is also a technique to drink: there should be a distance equivalent to your clenched fist between your chin and your chest, that position opens your throat at the maximum.
I lost up to 8 kg (from 80 kg) during that period.
I bought also a book of recipes written by a professional cook who had developed MG…unfortunately it is in french…but maybe, one could find the equivalent in english?
Maurice.

[Gabe]

Hi - I just read your post. My Myasthenia also really impacts my swallowing. I struggle to maintain my weight. Here are the things that I have learned over time... Eat about 30 minutes after Mestinon when it is at its peak effectiveness. I choose not to drink with my meals so that I have enough swallowing power to get through with my food. I eat mushy stuff - hotdish (I am from Minnesota) oatmeal, pasta, things that have one texture - I have a great deal of trouble with juicy foods or soups that aren't cream soups - I seem to choke on liquids so I often thicken them. At first it grossed me out but now I am used to it. If you can drink milk or shakes there are lots of protein powders that you can mix with them to add calories - Eggnog has protein and calories and is thick, V-8 juice has nutrients and is thicker and easy to swallow. I rarely eat meat - it is hard to chew and swallow - I have been avoiding rice for ever because I almost always choke on it. Try no to eat food that is hot - warm is ok- room temperature is better - warmer foods tend to make your muscles relax more - so if you do drink with your meals don't drink hot liquids. Always make sure you are sitting up when you are eating and try tucking your chin to your chest when you swallow. It helps the food go down. Eat small meals often - and early in the day rather than later... Make yourself eat even when you aren't hungry - easier said than done, I know. I think that sometimes I don't want to even start eating because I don't want to choke or have the food go up my nose or into my lungs...but you have to keep trying. I have had aspiration pneumonia several times but less so now that I have tried various strategies for swallowing. OK, so you may already know this, don't try to thicken carbonated beverages...it doesn't turn out well. Juice works best - water is wretchedly unpleasant when thickened. Resource sells pre-thickened liquids or you can buy Thick-It or Thicken-Up at most drugstores and add it to liquids or soups... Good luck. hang in there.
Gabrielle

[erinhermes]

Brian,

Just checking in to see how you are. Are you feeling any better? Have you been able to eat?

When you get some time, please let me know how you are!

Erin

[Brennan068]

Hi Erin,

I never had problems with my limbs, the first symptoms were speaking and swallowing. We were plenty nervous for sure. I'm just out of the hospital on a day-pass here now as I had a minor crisis and they've been keeping me in there while they clear the pneumonia out of my lungs. While in there, my neurologist did come up and see me and got me rolling on plasmaphoresis - 5 days an hour a day and it has made a world of difference in my condition.

I was already on Mesthinon 60 x 3, we've bumped that to 90 x 4 while I'm in. That is helping a lot too. I'm able to eat, although it is going to be a little stretch before I'm back up to a normal eating pattern; this crisis* kicked the *&& out of me. (*note: not a full blown Myastheniac crisis, just a very severe aggravation caused by pneumonia.)

I live in Atlantic Canada.

Brian

Originally Posted by erinhermes

Swallowing, eating and breathing were the last things to go for me. I don't know how you do it - I was sooooooo scared @ that point!

Maybe, maybe, maybe you need to be on meds - steroids or IV IG or plasamaphoresis if you are too weak to eat. I mean, you can't really get stronger unless you have enough nourishment. It sounds like the Mestinon isn't enough for you and you need more meds/anther neuro........

My neuro made me go to the hospital for IV's full of fluids, IV IG and blood b/c I was too weak to swallow (or do anythig else for that matter) and started me on steroids while I there - they have to do that b/c Mestinon and steroids can SOMETIMES cause problems when you first take them together. I did not know that until a friend of mine who owns edrugsearch.com pointed out a boatload of information regarding Mestinon and Prednisone......

Where are you living? I am truly, truly sorry to hear that you are having these problems and will keep you in my thoughts and prayers....

Hang in there and get in touch with your neuro quick!

Take care!
Erin

[Brennan068]

I had a thymoma on my thymus. It was mostly encapsulated, but there were microscopic protrusions through the cell walls. My thoracic surgeon was 99.999% confident he got it all, but to be on the safe side, the oncologists wanted to do radiation therapy to ensure there was no recurrence.

Originally Posted by erinhermes

One last question - why did you have radation therapy?

Just curious..........
Erin