I almost hesitate to post this email considering some of you are going through so much more. You are all in my thoughts and prayers daily.

I have noticed some new things going on with me and I am not sure whether they are MG related or not. There have been about 3 times this last week that when I go to bed I can't sleep because my left leg is twitchy and jerky. I'm not really sure how to describe it except that it feels alot like restless leg syndrome. It just won't seem to relax. Today while walking a clients dog I noticed this weakness in the muscle of my left leg that I have never had before. I am in good shape overall and this concerns me because it was just the left leg. My right feels normal. The other thing I have noticed is times when I feel like my heart is racing and I have ringing in the ears. This too only started in the last week. Part of me thinks it may be stress related. I am working sooo hard on trying to keep it to a minmum but am not succeeding! Between being in the midst of a huge recession and the Dr. bills that continue to rack up I worry about money every single day! I'm sure alot of you worry about the same things. We have got the WORST mortgage company in the world I think and trying to work with them is so frustrating. My husband is a truck driver and the economy has hurt his line of work hard so we worry everyday whether his company can stay afloat through this financial crisis. Sorry I am veering off the subject here.

I guess I am wondering if any of you experience symptoms like this too or do you think it is unrelated to MG? I noticed a couple of people talked about taking muscle relaxers. I was worried that might make the MG worse but at this point if I can get a good nights sleep I would take it in a second. Also if any of you have suggestions of ways of dealing with stress I would LOVE to hear them! I work very hard to be a positivie person and look at the bright side of everything but my health and finances worry me sick!

Hey Kendra,

I'm sorry, but could you refresh my memory on the meds that you take? I get twitching sometimes from the mestinon. It's usually in my eyes, but I get it in my arms and legs as well. I do get weakness, and while it's usually on both sides, I have gotten it on only one. When I do get it, it's a warning for me to stop and rest! If I don't and continue to push, I have to literally use my hands to help move my legs to get me to the nearest place I can sit down and rest. This dosen't happen very often anymore. I've had MG going on 11 years, and I've learned not to push...it will win everytime. I don't know what is causing yours, but have you called your neuro and checked with him/her? As far as the stress goes...it's very bad for us. I understand all to well how difficult these economic times are. Make time for yourself and your husband too. Do something you both enjoy doing that doesn't cost a lot of money. Anything fun and relaxing that helps reduce the stress. Take care and let us know how you're doing.

Hugs,
Pat

Hi Pat,
I am not taking any meds right now. I am newly diagnosed and the Nuero is planning to start me on Mestinon after all my tests are done. I have not called my neuro yet. I guess I better do that. I wasn't sure if it was necessary because I am not having breathing or swallowing difficulty. I think you may be right about overdoing it. I have felt pretty good for the last week and may have done to much this weekend. I feel like there is always so much I want to get done while my husband is here to help me. I may need to force myself to take breaks even if I don't feel like I need it at the time.

Thanks for the advice on doing something fun and inexpensive!!! We need to do that.
Thanks,
Kendra

OMG.. That is how it started with me! Twitching, tingling, then spasms, now pain and numbing. and it is my left side only.. I am going to the Neuro tomorrow morning {I called today because the pain was so intense I couldn't sleep} I can walk as long as it isn't on steps, if I have to step up or down the pain is unreal or a lose my balance, are you also lightheaded and dizzy? Plus I do things wrong, like I picked up the tv remote to make a phone call.. actually started to dial..LOL My upper left side is weak, not painful, just weak and tingles at times. {worse then normal MG} I don't take any medications because I am super sensitive to them but I did try a muscle pill last night thinking it was just muscle strain but it didn't help at all and this morning I couldn't stand on my leg at all for at least 10 min. I will let you know what Dr. says tomorrow. Oh and yes, I have the ear ringing and fast heart rate {135} but I figured that was from a shot of steroids they gave me last week when I had my port worked on and had an allergic reaction to some med they gave me.

Hey Joanmarie,

I'm so sorry you are having such a bad time with your leg. I have pain, but not like yours. I hope you find something out tomorrow...good luck. I'll be keeping good thoughts. Take care.

Hugs,
Pat

Joan Marie,
Oh wow that is strange that this is how yours started too! How long ago were you diagnosed? I couldn't sleep last night either. It is crazy how it starts with the twiching and tingling but then becomes painful. YES, I am definitely light headed and dizzy! Those go along with the episodes where my heart races and I have ringing in my ears. Sometimes I have to stop what I am doing and just sit for fear I am going to pass out or lose my balance and fall over. It is so scary! Mine are short lived so far,lasting only 3 or 4 minutes. I noticed you mentioned the pain when going up stairs. I have that too! I notice that when I put my weight on my left leg it sends this pain through it. I will be so anxious to hear what your Dr. says tomorrow!!!
Thanks,
kendra

Kendra, For now, don't assume any new symptom is MG. Call your neuro. They may want to check a brain MRI. One-sided weakness with dizziness should always be checked out right away!!! You don't need a stroke.

I know how hard the economy has hit everyone. It's horrid. There are things to help. First, write down all the stressors you have. Make a separate list for the economic ones. You can refinance your home with another mortgage company. Look into that. You can have a garage sale and sell as much as you don't need. Maybe get together with neighbors and have a bigger sale with everyone doing it on the same day. It brings in more people. Think of as many ways as you can to reduce spending/costs.

If your mortgage company is still being nasty, you can contact your State representative or senator or your State's Attorney General. You'd be surprised what effect that has on people in business.

Food companies like SuperValu are always looking for drivers. I don't know what your husband does exactly but looking for a new job is not a bad idea as long as his current employer doesn't find out!

As far as stress in general, you have to combat it like you would anything else: with a PLAN. I am a designer and writer. I can't design anymore but I love to write. I lose all track of time (and stress). Music will do that for me too. Anything physical helps but if your MG is bad, doing something physical will just make you feel worse! That afternoon cup of coffee brightens my mood.

This "video" from the opening day of the Oprah show last week makes me smile every single time I watch it. I don't think you even need to be a Black Eyed Peas fan.

http://www.oprah.com/article/oprahsh...lash-mob-dance

And then there are computer games. They are very addictive and can make your arm go numb! But they are a distraction and can help a bit.

http://www.abcarcade.com/bubble-shooter.html

http://www.abcarcade.com/bomboozle.html

If you have problems with your eyes, however, they may make you much worse. And those colors and images tend to have an "after effect," meaning they can stay in your sight for awhile.

But please do get the dizziness and one-sided weakness checked out. Especially because you are stressed. I hope it's "just" MG. And I hope you guys can alleviate some stress.

Annie

Annie,
I will call my Neuro tomorrow. I left a message for his nurse this morning to see if the results of my antibody test had come back but haven't heard from them yet. I was going to mention it to her and see if I needed to come in and see him. You are right, I definitely don't need a stroke!!! That crossed my mind too. My mom had a stroke at 38 and that fear is always in the back of my mind.

I love the ideas on ways to deal with this economy. I had been thinking of having a garage sale anyway. I also appreciate the info on contacting the Attorney General if our mortgage co. continues to be nasty. I hope it doesn't come to that but considering the way they've been so far I'm not holding out much hope.

My husband actually drives a refrigeration unit and hauls food products. We have discussed him looking for a new job where he can get more freight. I am the scaredy cat when it comes to him changing jobs. Primarily because he carries our health insurance. I am affraid they won't cover my pre existing conditions. I guess we need to look into that though.

I saw Oprah last week and LOVE that video too! It is a true feel good song. My eyes do bother me but I am going to give the video games a try. I was a teen of the 80's and lived in video arcades at the mall so that is right up my alley! I too love my cup of coffee! Thanks for taking the time to type all this out Annie. It is truly appreciated.
Take care,
Kendra

Good, I'm glad you're going to call your neuro.

I'm sorry your Mom had a stroke so young. That makes me wonder if you guys have some kind of clotting disorder that may run in your family. Antiphospholipid antibody is a common one. There are others like Factor V Leiden, etc. Either a primary doc or a hematologist usually run those. It's definitely worth checking out. Also, having a hole in the heart (either a patent foramen ovale or atrial septal defect) can contribute to having an ischemic attack (TIA) or stroke. I have a PFO.

I know, wasn't that the most fun song and "dance?" I can't get it out of my mind it's so uplifting.

As long as you keep a continuation of coverage in insurance, they can't not give you insurance if your husband changes jobs!!! I don't know what the statutes are in MO. At least our govt. is working on making it a national thing.

Annie

SuperValu
St. Louis Distribution Center
7100 Hazelwood Avenue
Hazelwood, Missouri 63042
314.524.4000

SAVE-A-LOT Headquarters
100 Corporate Office Drive
St. Louis, Missouri 63045
314.592.9100

SHOP ‘N SAVE Headquarters
10461 Manchester Road
St. Louis, Missouri 63122
314.984.0900

Annie,
My mom was diagnosed with a blood disease after her stroke. Her red cell count was out of this world. She passed in 2002 from a blood clot after a spleenectomy. I was diagnosed in 2003 with a blood disorder too. Mine is due to a high platelet count. I do have a Hematologist and see him twice a year.

What a relief on the health insurance!!! That puts a whole new light on him changing jobs.

Thanks for the food transport co. too!
Kendra