Update

[Midnight]

Hi all,

I finally got to the ALS clinic and they think I may have MG. It is as rare as ALS, but symptoms are supposed to be treatable and life expectency is supposed to be close to normal. It is more than I could have wished for. They are sending me to UCLA to attempt to confirm because my blood tests showed negative for this test, but I have some clear atrophe showing up, extreme fatigue, speech issues and issues that are definitely bulbar, and problems with my gait, and they said that MG will sometimes not show in blood tests unless it is in a "flare up". I guess that since I have a good day followed by a bad one and especially having had breathing issues and swallowing issues it tends to point them in the MG direction. I am still waiting on my lymes, but I'll take either one or both at this point.

I sincerely want to thank you all for all you have done for me whether you realize it or not. There is something to be said for human beings being able to relate and understand each other and sometimes a complete stranger that understands is better than the closest friend that has no idea what to tell you. It has made some of my worst days much more bearable, and sometimes even had me laughing. I have never been so scared in my life of being slated to die. It is so very humbling. It has made me realize how precious each life is no matter how long we are here. As a wise man once said "live today like tomorrow will never come"..or something like that

 

[Al]

Hey midnight. That's the typical good news/bad news scenario. Good to hear that it's more good news than bad news though. Glad we were able to help in some small way. Let us know how UCLA goes.
AL.

 

[Steve100]

Hi- congrats.....whats MG?

 

[Midnight]

myasthenia gravis . It is an autoimmune disease but tends to have some periods of remission. It can be treated for symptoms with meds and surgery eventually when meds stop working. It can give you twitches from muscle wasting and gives you extreme fatigue. I have had a really fatigued neck, jaw and issues swallowing food and drinks. It also explains the falls and drop in shoe size on one foot and my problems with my gait. The good news is that it comes and goes and they can try to put it into remission. I have had so many days where I wondered will i soon be able to hold my kids or even wondered how much longer I was going to last without a chair or neckbrace. It also affects speech...another symptom that is similar to ALS. It also can affect breathing and necessate a trach but it is usually temporary intubation. It also usually gives you droopy eyes...but I could care less at this time about that. I am thankful. Not great news , but it obviously is manageable. Have a great night y'all.

 

[Beebe]

Midnight

Hi Midnight, Just want you to know I "Had" MG . I have been in remission for about 25 years no meds. I had a very bad time for many years but had my Thymus Gland removed and within a year felt normal again. Any questions or just want to vent I'm Here. My son-in-law Jack has ALS. Hope to hear from you. My Best to You, Beebe

 

[Steve100]

myasthenia gravis .

Got ya. Hope it all goes well for you.

 

[puzzled36]

Midnight,

the ALS specialist I see also thought I may have MG. I have bulbar issues, atrophy around my mouth, twitching, cramps, lost a shoe size and my watch and rings are too big. He put me on Mestinon because I had a single fiber EMG come back abnormal but it didnt really help. Anyway, I was told that MG wouldnt cause generalized atrophy. Do you have any info on this, what did your doc say?

Thanks a lot.

Gina

 

[CindyM]

It is always nice when somebody gets DX'd with something treatable. Glad to hear it, Midnight! Cindy

 

[Midnight]

Generalized atrophe

Hi Gina,

Yes, I have very obvious atrophe on my left hand, where I twitch the most frequently and I have some atrophe in my lower calf on one leg. He said maybe it is carpel tunnel in my left hand. He is the first doctor I didn't mention the atrophe to and he noticed it right away.

Do you have walking problems? I think that is what is bothering me the most right now. I walk like an 80 year old woman (and I love 80 year old women, just don't want to walk like one yet..sorry grandma).

I have made some adjustments with eating that have really helped. Someone told me to put my head forward and down and it had helped tremendously, plus I am careful with thin liquids...strategically placing the food in my mouth for chewing because my tongue is tired. I have gained back 10 lbs, but not gained any of the muscle back.

I think a couple of the things that point to MG are that if I am even the slightest bit active I pay dearly for it the next few days (and & am normally, or used to be a pretty active person) and also... I can hardly hold my head up. I literally am ALWAYS looking for something to lean my head on because it is so weak. If I cannot find something to lean my head on, I have to put my arms on something to lean my head on. I am trying so hard to make it look not obvious, but it is pretty obvious now that I my muscles are fatigued. Maybe my brain is growing so big and smart it is hard to hold up now? It is the only explanation that really makes sense to me :mrgreen:

 

[CindyM]

Hi Midnight! I am SURE that is the reason. :-D A big brain must be really heavy. Fortunately, I will never have this problem...Cindy

 

[cheryilyn]

i never thought of that. thats why my head is so heavy. i'm getting too smart for my own good.