I am trying not to give up, but these idiot drs make it so difficult and frustrating.

The heat is very hard on me, most definitely, I have zero energy when it is hot. The heat from the stove bugs me too, but I don't cook a lot because of my RSD in hands, arm, shoulders, feet, etc. A hot shower does take a lot of me...never really thought about that before. I never put ice on my eye since I have RSD on that same side of my face and ice is a no-no with RSD, it is one of the worst things you can put on RSD. That is why I have been hesitant to try the ice on ptosis test.

Sorry, I forgot you had RSD in the eye. Yes, ice is a definite no-no. I had to take a break in the specialist rounds and redirect my approach to get a diagnosis. I know how frustrating the rounds of undecided doctors is. You might try suggesting to the neuro-optomologist to try mestinon to see if it helps. Many doctors do this an aid in confirming MG. I am sure the RSD symptoms are complicating the diagnosis. Try to hang in there.

Sending prayers your way,
kathie

I am scheduled for a follow-up on June 13 and will talk to the neuro-ophthamologist about the mestinon. You are right, my RSD symptoms do complicate things...they like to just chalk everything up to RSD, as do I, but we can't really do that.

Something odd happened yesterday morning when I took a shower. My husband showers first and it is pretty hot when he finishes, I usually adjust the temp when I turn it on but this time it got a little too hot in the shower. All of the sudden I had zero energy and had a hard time catching my breath! I could barely finish my shower. Once I finished, I had to sit down (luckily we have a bench in the shower) and open the door to let some cool air in. I had to sit there for a while before I could even dry off.

The night before that, we were at the store and I got hot and had to sit down, it was like I just couldn't go. Weird feeling...

MG will do that. Before all the MG meds, I would be very weak and breathing very heavy after showers. If I washed my hair, it would take 2 hours to recover from the shortness of breath. So now I only was my hair once a week on my day off. I bought a Coleman watch, it measure the temp with the time. that way I can monitor the temp where ever I go, sometimes you don't realize how much heat you are exposing your body too and with MG you will pay for it later.

good luck
kathie

I read lots of comments about heat affecting MG. But what sort of temperature are we talking about. Yes I need a rest after showering, and it takes me longer to get dressed, resting, in between each sock etc. than it takes to shower.

But the shower is not that hot. Outside, in this country it is rarely over 25C. But if it reaches 30C, I enjoy the warmth, but my breathing becomes worse and I feel fatigued.

The same thing happened again this morning when I took a shower But I know it wasn't as hot in there as it was the other day. That is a good idea about the watch, didn't know they made those. Unfortunately I cannot wear a watch...or necklaces, or rings, or bracelets. Bums me out with RSD everywhere, the only thing I can wear jewelry wise is earrings...my husband likes it only because I never ask for jewelry anymore

My shower was around an hour ago, I am sitting in the recliner now and my right eye is droopy and blurry. I don't even fell like eating breakfast. I really need to find out what is going on huh??

OK, I am just a little angry at the moment. I went to pick up my records from the neruo-ophthamologist office, which includes my first (and only) visit with him and the EMG and SFEMG (two different drs).

What angers me is the first guy's notes. He noted in there that he reviewed the cell phone pictures that I was advised to take by the previous ophthamologist I saw, to document the ptosis. He noted "they reveal variably open or completely closed right eye. When right eye closed, RLL up and RUL down as though actively closed rather than passive pttosis." That, to me, sound like he is saying I am closing it myself...REALLY??? Why would I do that?? You know when you are taking a selfie, there is an angle to it too...Then there was just a bunch of misstated mess in there.

I have no clue how to read the actual tests, but the first EMG where the dr told me it was abnormal put in the records as his impression: "this abnormal study demonstrated significant compound action motor potential decrement upoon repetitive stimulation of the right spinal accessory nerve. The study failed to demonstrate decrement of amplitude. The study is consistent with a diagnosis of a neuromuscular junction defect however single-fiber is suggested." The interpretation on the SFEMG is: "This is a normal single fiber EMG of the right frontalis muscle. There is no electrophysiologic evidence to suggest a disorder of neuromuscular transmission."

Thanks for listening...just so frustrated right now.
Nanc

Nanc,

I am very sorry you are going through such unscientific doctoring. A negative SFEMG does not negate the positive EMG/RNS.

It helps to learn exactly what a diagnosis of MG looks like.

http://neuromuscular.wustl.edu/mtime/mgdx.html

Maybe you should print the page out and give it to your docs!

So, they only did the SFEMG on the right side of your forehead. Wow. They didn't do your forearm or shoulder? They should have done at least the area that was positive the first time! Geez, guys, what are these doctors thinking?!!!

What that doctor is describing is ENHANCED PTOSIS! He doesn't even know what it is. When you pull up on a droopy eyelid, it then goes up while the other side goes down. It can seesaw like that for a bit. So, his PERCEPTION shows his ignorance, and your REALITY is a sign of MG.

I'm angry for you. You more than likely have a disease that is serious if not treated appropriately or soon enough. They're approaching your situation unscientifically and keeping you from treatment.

Do you think you can find a neuro for another opinion?

I'm really sorry, Nanc. There's no excuse for this shoddy doctoring.


Annie

Hi Annie!

Thanks for your reply, I will print that info out. I plan on seeing a different neuro or I guess, neuro-ophthamologist?? I do have the name of another one that I can call. I am canceling my follow-up appointment with this idiot, not gonna waste any more time or money on him.

Yeah, the dr only did the SFEMG on the right side of my forehead....he stuck me in two spots there and that's it!

I have been trying to pay close attention to what is going on with me, physically, symptomatically, and I have noticed all this weakness and more breathing issues. I do not know if it is MG or what it is, all I know is that I do need to know what it is.

WHY do these drs have to be so friggin stupid??? This first appt with this guy lasted like 3 hours. HE was 30 minutes late getting there. I had a 8:00 am appt and of course had to arrive at 7:45. They called me back at 8:00 and my husband said he saw him arrive at 8:30. Then he took a while getting into see me and took FOREVER typing up everything. My notes are ridiculous. There are all these "quotes" that he put in there...she stated "..." So bizarre!

Sorry for my little rant there...I am just so over this guy...ugh!!

Nanc

Two spots? Well, that was the second mistake. He was obviously not well-trained in doing the SFEMG. I have so many areas on my forehead that got stuck, that I now have "damage" in those areas, showing up as tiny bumps. Electromagnetic fields that are "manmade" can kill cells.

You obviously have symptoms of MG, plus positive signs and test results. Don't lose faith in your instincts.

I feel your anger. Been there.

Annie