Timespan dosage update
 

As promised, here is an update regarding my dosage issues with timespan.
After my last post I experimented with my meds. Taking a timespan in the am and one in the pm resulted in uncomfortable side effects. Twitching, cramping and spasms. I then split the timespan taking 1/2 in the am and 1/2 in the pm.
This, however, didn't work for me either. It wasn't enough. I then tried the above with the addition of a 60mg in the afternoon. This was too much - back to the twitching, cramping and spasms.
Luckily, I saw my neuro last week. I was honest with her about my experimenting and after she 'clucked clucked' me a few times, she suggested I try the following: 1/2 timespan before bed. 1/2 reg mestinon in the am and another 1/2 mestinon 6 hours later. She said take more if needed.
I started this new regimen last week and, so far, it's working for me. Most of my symptoms have been addressed, however, I still get very tired after a few hours of activity.
The best news I received from my neuro is that she's holding off on putting me back on prednisone. She reminded me that I only have a 'mild' case of MG.
I wish she could have seen me last November when I couldn't walk without assistance or a cane. Oh well, I guess the term mild is subjective. I'm just very grateful, being seronegative, that I have a clinical dx and am receiving meds.
My last dr wanted me to go home and meditate then put on my hiking boots and climb our local mountain. I shared this info with my neuro and she said "are you kidding me, doesn't he know you have MG". She then recommended a new primary. Life is good!
Sorry for being so long winded (actually, quite a feat for someone with MG)
I hope everyone is doing well
Jan

Thank you for Sharing.:-)

I am both excited and a bit scared to try 180mg Timespan.

Instead of:
"Lions, and Tigers, and Bears, oh my!"
for me it's:
"Twitching, and Cramping, and Spasms, oh my!"

Justified fear if you take too much. As long as timespan is scored, you can split.
Taking just half a tablet is working great for me. Let me know how it goes!
Jan
BTW, when I took the whole timespan, my entire face, including my tongue, was twitching.

Update to my update
 

Well, here is an update to my update. Yesterday morning, my right leg felt like it was made of cement. My balance and coordination was wonky and my speech was garbled off and on all day.
Obviously my current, perfect, dosage is no longer working for me.
This morning I upped my morning dosage of mestinon to a full tablet (from 1/2
Tablet). I think I'll hold my afternoon dosage of mestinon to 1/2 tablet. In addition, I'll continue with 1/2 timespan before bedtime,
I'm very lucky that my neuro gave me the 'go ahead' to increase my dosage if necessary.
I guess one must not become complacent with this disease, for it seems it can change from day to day.
I'm considering applying for a disabled placard - are there any other MGer's out there that have placards? It's true that I won't always need one, but on those days that walking is difficult, a placard would be handy.
I welcome all imput. I feel like I'm flying blind most of the time
Jan

I have had a sticker for over a year. It gives me a little more time in the stores. Plus I use the electric carts if I feel weak.
Mike

Thanks Mike.

I have a disabled sticker. I also use an electric cart in a store if one is available. If not, I use my rollator. I know exactly what you mean when you say your legs feel like cement. Good luck getting your mestinon dosage right!

I have a handicapped license plate and always use it. I also use the electric carts if the store has one. My thought process is that I would rather use my energy doing something I enjoy as opposed to walking through a parking lot or a store!

Thanks to all for your responses.
My current dosage of timespan and mestinon seems to be working at addressing most of my symptoms. However, I still tire very easily and a few new things have popped up. Last night I attended a meeting and was required to stand for approx 15 min. After about 5 min, my legs started to feel weak and I broke out in a sweat. I thought I was going to pass out. I found a chair and after a few minutes I felt much better.
Upon returning home, I was reaching for something and I felt a spasm in my rib cage area. The spasm spread around my entire body and I felt like I was being crushed in a vise and I couldn't take a deep breath. I'm sure this lasted less than a minute but it was very uncomfortable.
Has anyone experienced anything like this?
I keep waiting for the day that I feel stronger and can resume my old activities.
So far, no such luck!
Thanks in advance for any imput
Jan