wbdolphin, thanks so much for your insight. I am in a similar situation as you were. I am a 53 year old female who has had moderate MG symptoms for 3 years after abdominal surgery.

I have done a lot of online research on thymectomy. Several reputable medical sites quote a 30% chance of remission lasting 5 years, 85% improvement in symptoms and virtually no one gets worse. There is short term exaccerbation of breathing issues. I did find one medical site that said there was a 1% mortality rate.

Statistics say 80% of MGer have abnormal thymus. I have read so many personal stories like your own where the thymus scan seems OK, but they find after surgery that the thymus was much larger than they thought or showed hyperplasia, some even had tumors that were malignant. I am surprised that thymectomy is not used more.

I just figure it is my best chance.
thanks
kathie

Hello and good luck with your myasthenic journey, strizzlow.

In the beginning before knowing anything about the effects of heat on neuromuscular transmission I was trying to do a warm water stretching class in a pool with a ramp with ladies 40 years my senior, and the heat from that pool seemed to fill my muscles with concrete as did the warmth of my normal morning shower. One of the older ladies in the class asked why I so young joined this class, why it didnīt help, and why I never seemed to manage to keep up with them. Well a few years before that I was river rafting the Grand Canyon (and playing volleyball down there after tying the boats up ) and driving through the Death Valley desert in a car without the air conditioning on - without any trouble whatsoever, and now suddenly a couple of degrees fluctuation could create such a difference.

Tomorrow I am going on a short sail trip in a small yacht. I am pretty worried about the sudden abnormal heatwave we are having and also having to help with the ropes - but I have taken good precautions and planned very differently this time round and everyone going on the trip is on full alert.
In my situation I am just incredibly grateful that this year I can even sit upright in a boat and actually grasp a rope at all if I have to


Anacrusis

I am a newly diagnosed 57 yr old female also living in Florida. When the temperature gets above 90 I have a lot more weakness. The overcast, rainy weather this month has been a godsend to me. The heat makes all the muscles in my face feel like they have weights hooked to them pulling down. My legs get really heavy and I drag my feet when walking. But my biggest problem has always been diplopia and ptosis. I can feel my eyeballs jerk around off and on all day.

My thymus scan was normal but I would gladly have it out to have a chance to go back to a normal life. I don't think my doctor thinks it is an option for me. I guess my my symptoms are considered mild at this time but, my life has really gotten so much smaller. It is depressing to think this is how it is now and it will likely get worse. I am still hoping for remission. Good luck to Cait, hope you get your thymectomy!
Sandy

Good Luck and have fun!!

Have a wonderful time! Bring extra ice packs. People says those cooling towels/bandanas from Lowes work really well.
thanks
kathie

Thanks very much

Now that I have been, I can see exactly why an overnight sailing trip to a warm Island may not necessarily be the most perfect of getaways for any type of myasthenic!

My best.....


Anacrusis

1) Stay in air conditioned home or buildings as much as possible.

2) Try to go outside (to do errands, etc). in the early morning before the heat gets really bad.

3) When I MUST get out in the heat, I dress very lightly and often wear a cooling neck wrap (AMAZON is my best friend), and carry a spare wrap in a lightweight cooler in my car so I can change it out.

4) Speaking of cooler, when I must venture into the heat - even short trips, I bring a little cooler, with the spare cooling neck wrap (in a plastic baggie) and a couple of bottles of COLD (sometimes previously frozen) water.

5) I often carry a little paper fan with me - which I use if I am in a situation (like a recent wedding) where there are a lot of people, the temps are warm and there is very little air movement. I also have a small battery operated fan, but that can be cumbersome to handle.

6) I avoid DIRECT sunlight, wear sun glasses ALL of the time, and a visor or floppy hat.

7) AS SOON as I start feeling "unwell and weak" and "overheated" from the effects of heat, I try to get OUT of the heat ASAP, TELL someone if I am really feeling poorly that I AM feeling poorly, sit down, cool myself down, and relax.

LOL - Can you tell I have had a bad experience in the heat???

8) Float and/or submerge in a friend's or neighbor's pool whenever the opportunity arises.

As We All Know (or may unfortunately might find out - the hard way), HEAT is bad for myasthenics. (Or, for many or most of us).

Staying Cool, Calm and Collected is my favorite way to spend a summer day!

That is SUCH a great answer, SoftTalker!

For next yearīs summer vacation I am checking in to this place for a few weeks:

http://www.icehotel.com/uk/Online-bo...nline-booking/

LOL

That place looks pretty cool - that is for sure.

I bought 3 of those cooling neck wraps - 1 to use and 2 to keep in the cooler to rotate. Don't forget to put the ice coffee and dark chocolate in the cooler for emergencies too!

kathie