[xmas 25]

i am so thankful to have found this group! i've had double vision off and on for 5 yrs very rare in beg but came back in oct 08 in late afternoon and never left. i have other medical issuses that i blame the weakness on like having to lean on shopping cart, sit while making dinner, can't stand while others cook i need to sit,sit while drying hair and list goes on . started mestinon in march tapered up to 60 mgs tid have followup next week. i have been jugglling with adding extra dose occ. with a big difference instead of waiting till next week.yesterday i took 60 mg every 3 1/2 hrs all day. what a huge difference!! but how do you decide between mg,just tired or out of shape,too much meds? i was walking 1-2 miles a day and stopped when my dog dyed and i felt so good when i stopped in march!!! really miss my dog though yesterday i was able to just lay down for 20 mins in afternoon and just kept going. i was just puttering around doing cleaning that wasn't very physically tough. it was such a great feeling! i love seeing sooo many people with positive attitudes! i can't stand when people wallow in their illness. i know chronic illnesses add another layer of depression to our lives but i think you need to get "it" before it gets you. yes we have moments or days when it's all just too much.but get up get dressed,move as much as possible even if it's just sitting outside for 10 mins in the sun! 20 yrs ago i started with a host of serious illnesses and somedays i would just stand outside in 20 degree weather to change my scenery and get fresh air. at timess the kids and i played more board games and read,art projects when i could'nt walk or bike with them. so worry for 20 mins a day then get moving! so for the rambling but it is what it is. HAVE A GREAT DAY and thanks for sharing what you have learned with the rest of us!

[maryec]

Xmas, you are so right, & it takes awhile to adjust your life, to get a feeling of accomplishment with the things you can do. I always like to have a prodject in mind. somtimes all I can do is think about it, but thats ok, cause when I finally do it, it's a great feeling !
I also am new & am so thankful for my new friends !
Mary

[erinhermes]

Welcome xmas! I for one can tell when it is my MG, b/c I feel so WEAK that just getting off the sofa is a big deal, either that or I cannot see - eyes get blurry - so I just take some more meds and rest - let the meds do their thing!

I think a positive attitude is huge! Sure there are days when I miss being my old self and cry, but then I see others and realize how blessed and lucky I am and realize it could always be much, much worse......

Again, welcome! You are going to love it here!

Erin

Originally Posted by xmas 25

i am so thankful to have found this group! i've had double vision off and on for 5 yrs very rare in beg but came back in oct 08 in late afternoon and never left. i have other medical issuses that i blame the weakness on like having to lean on shopping cart, sit while making dinner, can't stand while others cook i need to sit,sit while drying hair and list goes on . started mestinon in march tapered up to 60 mgs tid have followup next week. i have been jugglling with adding extra dose occ. with a big difference instead of waiting till next week.yesterday i took 60 mg every 3 1/2 hrs all day. what a huge difference!! but how do you decide between mg,just tired or out of shape,too much meds? i was walking 1-2 miles a day and stopped when my dog dyed and i felt so good when i stopped in march!!! really miss my dog though yesterday i was able to just lay down for 20 mins in afternoon and just kept going. i was just puttering around doing cleaning that wasn't very physically tough. it was such a great feeling! i love seeing sooo many people with positive attitudes! i can't stand when people wallow in their illness. i know chronic illnesses add another layer of depression to our lives but i think you need to get "it" before it gets you. yes we have moments or days when it's all just too much.but get up get dressed,move as much as possible even if it's just sitting outside for 10 mins in the sun! 20 yrs ago i started with a host of serious illnesses and somedays i would just stand outside in 20 degree weather to change my scenery and get fresh air. at timess the kids and i played more board games and read,art projects when i could'nt walk or bike with them. so worry for 20 mins a day then get moving! so for the rambling but it is what it is. HAVE A GREAT DAY and thanks for sharing what you have learned with the rest of us!

[ras1256]

Welcome Xmas!
So glad you found us too. And the just the mestinon has made such a difference for you! Isn't it great that there is something that helps? Imagine living way back when and having Myasthenia. We were less automated and there was no medical treatment! Those poor people.

Now, you will just have to share your real name, history, etc. with us, cuz we're not only friendly and helpful but we're nosey too!!!

Look forward to hearing more from you!

[redtail]

Hi xmas and welcome

Your list of things certainly brought back memories. I use to have to sit to shower, wash my hair, some days dinner would be a glass of milk because I had no strength to cook let alone chew and swallow I'm much better now.

Great to hear the mestinon is working.

Sorry about your dog, I lost my darling dog about a year ago, and still miss him very much

Glad you found us, and look forward to talking to you some more
take care
Kate

[cricket001]

I am having a hard time in the morning as well...getting up...bathing...blowing drying the hair...curling the hair....putting on the makeup...getting dressed.....

I just want to go back to bed...instead of going to work...after that workout!

I am seriously thinking about buying a wig that looks just like my hair...to cut down the "workout" in the morning! ....

Is that crazy or what!!??!! I would just cut my hair...but I don't want to give up everything to this mean MG!

Stephanie

Originally Posted by redtail

Hi xmas and welcome

Your list of things certainly brought back memories. I use to have to sit to shower, wash my hair, some days dinner would be a glass of milk because I had no strength to cook let alone chew and swallow I'm much better now.

Great to hear the mestinon is working.

Sorry about your dog, I lost my darling dog about a year ago, and still miss him very much

Glad you found us, and look forward to talking to you some more
take care
Kate

[redtail]

Hi Stephanie,

I know how you feel, I use to have a shower and go back to bed to recover. I couldn't even put my hair in a ponytail!!
Forgive me, but theres lots of people on the board, and my brain doesn't remember what medications everyone is on, but are you on Mestinon timespan. I started it about 4-5 months into my diagnosis, and it really helped me in the mornings until I could take my morning mestinon.
Kate

[ras1256]

I finally learned I had to modify my getting ready routine in the morning. You have to start a little earlier, but it's worth it. Plan to take a little break between segments.
I bathe/shower - 5-10 mins sit down - makeup - sit - blow dry - sit - curling iron - sit. I also got one of those little stand mirrors so I can sit to put on makeup.

I have to sit in a recliner with neck and back support to relax those upper body muscles. Just sit with eyes closed and don't use a muscle. This helped me with getting ready.

Kate is right about the Mestinon 180 (or timespan). It's time release isn't generally considered reliable enough for day use, but it does help to cover through the night and with the morning drags. Talk to your neuro about getting on it if you are waking up dragging.

Another thing to consider is a sleep study for apnea. I was dragging so bad in the morning, even with the timespan. They discovered I had apnea which I believe is fairly common in MGers. It helped with the energy level throughout the day and mental clarity too. They discovered I was getting virtually no REM (rejuventates the mind) OR Deep Wave (rejuvenates muscle) sleep. Combine that with MG and you have a real mess! The best part is, NO PILLS necessary to correct it - just the CPAP.

Some people find the CPAP to be a pain, but we've actually had some fun with it! My granddaughter named me Darth Vader the Elephant because of how I look and sound with it on and trying to talk! I'm now just DV the E at night!

[GI6607]

Originally Posted by ras1256

I finally learned I had to modify my getting ready routine in the morning. You have to start a little earlier, but it's worth it. Plan to take a little break between segments.
I bathe/shower - 5-10 mins sit down - makeup - sit - blow dry - sit - curling iron - sit. I also got one of those little stand mirrors so I can sit to put on makeup.

I have to sit in a recliner with neck and back support to relax those upper body muscles. Just sit with eyes closed and don't use a muscle. This helped me with getting ready.

Kate is right about the Mestinon 180 (or timespan). It's time release isn't generally considered reliable enough for day use, but it does help to cover through the night and with the morning drags. Talk to your neuro about getting on it if you are waking up dragging.



Another thing to consider is a sleep study for apnea. I was dragging so bad in the morning, even with the timespan. They discovered I had apnea which I believe is fairly common in MGers. It helped with the energy level throughout the day and mental clarity too. They discovered I was getting virtually no REM (rejuventates the mind) OR Deep Wave (rejuvenates muscle) sleep. Combine that with MG and you have a real mess! The best part is, NO PILLS necessary to correct it - just the CPAP.

Some people find the CPAP to be a pain, but we've actually had some fun with it! My granddaughter named me Darth Vader the Elephant because of how I look and sound with it on and trying to talk! I'm now just DV the E at night!

I also have MG & Central and Obstructive Apnea. I use a Bi-Pap each night. Reading all I could about it implies that sleep apnea is a common secondary diagnosis for MG patients. My sleep studies also reflected I was getting less than two hours of meaningful rest per night, awaking hundreds of times to regain my breath. I believe the constant tiredness from lack of sleep magnified the MG symptoms.

[maryec]

Cricket, me to, I think it's the heat thats kicking my *** ! my eyes are tired, swollen, & watering to beat the band !
GI, that is interesting on the sleep apnea.
Welcome Xmas, again !
Mary