Hi Everyone!
This is my 4th attempt to post this - guess I was too wordy?

My new neuro really impressed me. She lists MG as one of her sub-specialties which means she really stays on top of developments on MG, which was obvious at my appointment.

She had some good info that you may or may not be aware of, so I wanted to share.

She says MG's course fluctuates yr-to-yr, mo-to-mo, even hr-hr. For that reason she has me keeping a diary of how I feel through the day, when I need the mestinon, what I am doing before I needed it, how I feel afterward, etc. Just real detailed. That way, we may be able to determine the most accurate dosing of Mestinon for me. Certain times of day I may be able to go 6 hrs., other times only 3hrs. This makes more sense to me that the 60mg 3x/day the previous neuro prescribed. That just wasn't cutting it.

Heat (core temp) is important. She suggested getting a cooling vest to help control it when it gets hot. They are advertised for MS and sold online in various styles and prices.

I may actually get to do some fishing in our boat this year YEAH!!

Cool temps help with MG - try drinking cold (not too icy I've noticed) water prior to eating to aid with swallowing. Avoid hot showers and baths, too.

Thymectomy success stats she told me - appx 30% go into remission,
30% can reduce the amount of medication they need, and the last 30% get no affect at all. That's still a 60%+ chance of a positive benefit, and with the new minimally invasive surgery procedure (where was that when I had mine done??? ) I personally think it's way worth it. Check out this link for info, but I see there are a lot of locations doing the new procedure, so keep in mind Mayo isn't the only place for this.

http://www.mayoclinic.org/myasthenia-gravis/mit.html

Nobody can predict which course YOUR myasthenia will take. Patients
react differently to different meds and treatments, so it's often trial and error. The diary helps you learn what your limits are - if you do alot today and are wiped out tomorrow that probably means you did too much today and will have to scale back.

Very few patients have just one condition - especially with autoimmune problems. Sorry - but that's what she said . This is important to know so that you are giving your doc ALL the information they need.

Interestingly, she said the caffein/nicotine doesn't create problems when they test the peripheral nerve - its testing a different nerve set that they warn patients to avoid those prior to the tests. (I personally am still going to avoid them before - just in case!)

I am going to split this post up in the hopes of actually getting through!

Some tips on choosing your doctor and how to prepare for an optimal appt. will be on another post.

Hope this information is helpful to someone. I also hope I didn't leave anything real important out, but by the fourth try I'm not sure what I've typed when .

Thank you! THat was wonderful! I have noticed that I almost CRAVE ice cold drinks with ice - lots of ice - and chew the ice. It seemed to help my swallowing issues!!!!!

As for the heat - that cooling vest is a GREAt idea! I for one cannot take the heat @ all - my face balloons to TWICE it's normal size and I feel terrible.....needless to say my home and office ae always 60 degrees or so.....everyone knows to wear a jacket or sweater when they come over - and I sleep with several fans @ night and almost no covers...........

Thanks for all the info! It was GREAT!

Erin

You're welcome, Erin. Hope it makes life a little easier for us all this summer. Are you feeling better? Your IVIG working out well?

I used to soak my clothes, but my body would heat them up to fast. Steve (hubby) told my new neuro the worst he ever saw me was on a fishing trip on a real hot day - he said he didn't know if I was even going to make it back to the dock - I remember that time and I wasn't sure I'd make it either. Now it's worse - 15 minutes in the heat and I'm melted like butter for hours!