Tracy, I am so sorry you are doing so poorly. If you feel you need more treatments and are being kept from them, you have the right to get a 2nd opinion. I know there's not much to choose from where you are but you have the right to have enough treatment for a good quality of life. I hope you'll get the help you need.

Annie

Tracy,

You say that you have been seen by a pulmonologist. Try discussing with him the option of non-invasive respiratory support.
To me this has made a life and death difference.
Unfortunately, neurologists (for reasons I can't explain) stay away from even trying to understand respiratory problems.
Once you have your own respirator (and no nurse is deliberately taking it off to measure your non-recordable vital capacity) you have full control of how and when to treat your respiratory difficulties.
Further more it allows you adequate sleep and rest, leading to a significant improvement in your functional ability and quality of life.

I have Chronic Lyme Disease too and it makes everything difficult. I am walking around with a chronic infection and am on two different heavy duty antibiotics, one IV, which can exacerbate the MG. I have had this for 7 years. I am on a ton of meds; I also have another autoimmune disease, small fiber neuropathy. Throw in hypothyroidism and dysautonomia (POTS.) It's kind of a big mess but the MG is definitely the worst offender with the Lyme and coinfections pulling in a close second. In the last year I've been treated for Rocky Mountain Spotted Fever, Babesiosis, and Bartonella, all tick borne infections. Lots of different antibiotics. Just treating the Lyme now, but these infections are all chronic and can and do recur.

However the symptoms I'm having are mostly MG related except perhaps the fatigue and lack of motivation, and brain fog. I have made a lot of progress with the Lyme, just in time to get diagnosed with MG a year ago.

I'm so sorry to hear what you are going through!!! I hope they can find a "cocktail" that will work better for you!! As far as the cold tongue thing goes - Just the past month or so when I eat ice cream my speech gets really slurred.. but it improves if i take a walk outside in the cool weather.... I guess thats the difference between extreme cold and just a little cool! Good luck to you!

I wanted to add here that I don't tolerate cold things very well. I makes me lose my voice, choke on things and have trouble swallowing.

I no longer drink any drink with ice cubes in it. I leave water in a jug in my kitchen so it can get to room temperature before I drink it.

I still have small amounts of ice cream on occasion, because I love ice cream, but I always eat it with a cup of hot chocolate or tea on the side so my throat doesn't quit working.

Oddly, at least to me, hot drinks don't give me any trouble, in fact I drink hot drinks even in the summer because I find them to be somewhat helpful.

Yep, Susan and I are the "odd balls". I'm sitting here drinking WARM tea. And, I'll drink it until the temp gets to about 90° outside. Then, I'll drink room temp tea. I NEVER use ice cubes. I drive the folks at restaurants crazy by asking for "ice-free" tea. (I also drive em crazy 'cause I wipe down the table and utensils with anti-bacterial wipes -- but, that's another story.)

I actually don't like HOT or COLD. I just like room temp leaning towards warm. Anything else seems to make me start coughing. Could be the MG -- or could be the asthma.

I know what you mean about the wipes. After this last little infection I had, I'm considering a "Michael Jackson Mask" to heck what people think. I took such a setback I'm having 8 Ivig treatments.
Mike

Jana, iced drinks or anything cold such as ice cream makes me cough, too. For a while I thought I might be allergic to something, but I've figured out through experimentation it is the temperature. I'm glad I'm not alone in this.