[rumpled]

Originally Posted by erinhermes

So you were "re-diagnosed" with MG? WTH? What is WRONG with your docs? I don't see why on earth they ever changed your dx to begin with!
I wonder how many of us have parents that have MG symptoms as well......my mom does, though she won't see a dr - her fear of needles is worse than mine - go figure!

I wish you had a dr that actually cared! I don't understand why you have to go through all of this........don't they realize how dangerous the choking is? How weak you are?

As for your mom, 1/2 a pill ain't gonna do squat! Anyone in their right mind would know that! I was on 480 mgs of mestinon and still had a crisis and ended up in ICU - sometimes it does the trick, most of the time we need more meds - sadly - sigh...........

I have missed you! I was so glad to see that you posted! There are so many new people on the forum now!

I hope you FINALLY get the help you need! I hope your mom feels better as well!

Please let meknow how you are when you have the time/energy!

Big, big hugs!
Erin

I am sero-negative and my EMG's are negative with only a positive SFEMG - and while my mom's eyes are wild, mine are pretty fine. The EMG's do me in.

I told my mom that half a pill was not even a full dose but she listens to he doctors who must have their head in a place where they see with one eye out a belly button and not to me. They are not even doing any more testing and she is not pushing. Joy.

Yeah, the choking drives me nuts as it hits me even when I am not eating - so I choke on my saliva like when I am watching a movie or just sitting around and it can get hard to breathe at times. I try to limit my activity but it is a double edged sword - I do something and then end up in bed, or I just stay in bed as I know if I do something, I will end up there anyway. What a life. Or is it?

If you think getting a diagnosis for MG is hard, my endocrine stuff is also a nightmare. I have peripheral sight loss, an ACTH that is 3117 (6-48) and the docs say, well, the MRI is ok (presumed) - and the MRIs are the least reliable piece and often up to 40% inaccurate. Great. Whatever.

I have been reading. I just do not post much.

I am glad to hear you are going to be able to reduce your pred!

[rumpled]

Congrats on your Rain!!! Woohoo! I hope it comes around enough to break the drought.
I hope you have fun at your auntie's and maybe you can snarl at a few cows...
Hope the cooler weather helps you out - the heat usually does not help!
As for again - somehow I feel it is still but you know how fickle the neuros are!

Originally Posted by redtail

Wow you go away for a couple of days and the place is flooded

Hi Rumpled, good to see you again you have mg again, oh how wonderful for you

I had a great time out at my sisters. Today we went shopping, and I was walking around snarling(you know top lip currling up) wondering why I was doing it. It all of a sudden hit me, my eyes were drooping, and my whole face was trying to "be normal" and keep my eyes open. When I realised this I relaxed and just let my eyes droop, and felt a whole lot better. This was all to do with how cold it was, just 13C(55F) Yeah I know its not as cold as some places, but considering we have been having balmy weather for the last couple of months it was a shock to the system!!

Iam heading off again up to my Aunties place, she and her hubby have a dairy farm up near Perth. I'm taking the train, as long car trips are a bit scary, if my eyes start closing! I'm really looking forward to spending time with her.

[Pippi]

Hey All. I was diagnosed August of last year with Myasthenia Gravis after going to 2 emergency rooms, 2 general practitioners, and eye doctor, and 2 Neurologist. I had droopy eyes,shortness of breath, could not swallow(Did not eat solid food for 45 days) and severe weakness/fatigue. I am a diabetic, so my Neuro has me on Mestinon and Cellcept. Progress has been very slow. In November I was climbing steps.fell backward and was knocked unconcious and airlifted to an Intensive care trauma unit. I have not been able to work since Nov. as I cannot climb stairs, still slur speac, and has a great deal of fatigue after writing/typing/walking for 10-15 minutes. I have found no support groups in East Tennessee and have not found any other males in this area with the disease. I am 58 years old and have applied to Social Security for disability benefits and have been denied once.(They keep sending me PAIN questionaires to fill out and I can't seem to get them to understand the disease, I was turned down the first time and have now appealed. When reading about the disease, I really thought I would be doing much better by now, but inability to work, being months behind on bills, etc. am under so much pressure I feel like a failure to my family and don't understand or know what to do. Found this site referenced by a support group I found on Facebook.

[erinhermes]

Hey there! I bet you are gonna have a book written about you some day ! Not what you want right now, but they have got to figure it out sooner or later.......they've just got to!

I don't know how you've hung in there this long - you are one tough cookie! I so admire your strength - wish I could be more like that!

I so wish we all lived closer to each other - that way we could run errands for each other, etc when we are having bad days........

Do you think your mom would even entertain the notion of seeing another neuro? That way she can get some REAL meds and feel better!

Can't wait to hear from you!
Big, big hugs!
Erin

Originally Posted by rumpled

I am sero-negative and my EMG's are negative with only a positive SFEMG - and while my mom's eyes are wild, mine are pretty fine. The EMG's do me in.

I told my mom that half a pill was not even a full dose but she listens to he doctors who must have their head in a place where they see with one eye out a belly button and not to me. They are not even doing any more testing and she is not pushing. Joy.

Yeah, the choking drives me nuts as it hits me even when I am not eating - so I choke on my saliva like when I am watching a movie or just sitting around and it can get hard to breathe at times. I try to limit my activity but it is a double edged sword - I do something and then end up in bed, or I just stay in bed as I know if I do something, I will end up there anyway. What a life. Or is it?

If you think getting a diagnosis for MG is hard, my endocrine stuff is also a nightmare. I have peripheral sight loss, an ACTH that is 3117 (6-48) and the docs say, well, the MRI is ok (presumed) - and the MRIs are the least reliable piece and often up to 40% inaccurate. Great. Whatever.

I have been reading. I just do not post much.

I am glad to hear you are going to be able to reduce your pred!

[Brennan068]

Hi Pippi,

Welcome to the group. It works well as a virtual support group; there are none in my area of the world either. Feel free to ask questions, post rants etc. Everyone here understands what you're going through

Cheers,

Brian.

[erinhermes]

Hello and welcome to Neurotalk! You are gonna love it here! There are so many amazing, wonderful, supportive people here with tons of info!

MG is a RARE disease - that's prolly why you haven't found that many people with it where you live - lucky us, huh?

But the GOOD thing is that you have been dx'ed - now we just need to get you WELL! You are not letting your family down - you are SICK! YOU need help, not scorn. Sadly, few people know anything about MG and how it effects us - feel great one minute and down on our backs the next.

Take a deep breath and make sure your neuro knows that you are still weak----there are lots of options for us now! IV IG, plasma exchange, pred, imuran, etc......You just don't want to over do it and pay the price! I speak from experience on this one!

Stress makes MG worse - sad but true. You need to stop beating yourself up and start taking care of yourself! It sounds like you need a support group - well you've got one now! We are all here for YOU! If you need to vent, vent away!

I'd love to hear from you when you have the time/energy!

Erin

I was given Paxil by my neuro - he said a lot of people with MG suffer from bouts of depression as well!

Originally Posted by Pippi

Hey All. I was diagnosed August of last year with Myasthenia Gravis after going to 2 emergency rooms, 2 general practitioners, and eye doctor, and 2 Neurologist. I had droopy eyes,shortness of breath, could not swallow(Did not eat solid food for 45 days) and severe weakness/fatigue. I am a diabetic, so my Neuro has me on Mestinon and Cellcept. Progress has been very slow. In November I was climbing steps.fell backward and was knocked unconcious and airlifted to an Intensive care trauma unit. I have not been able to work since Nov. as I cannot climb stairs, still slur speac, and has a great deal of fatigue after writing/typing/walking for 10-15 minutes. I have found no support groups in East Tennessee and have not found any other males in this area with the disease. I am 58 years old and have applied to Social Security for disability benefits and have been denied once.(They keep sending me PAIN questionaires to fill out and I can't seem to get them to understand the disease, I was turned down the first time and have now appealed. When reading about the disease, I really thought I would be doing much better by now, but inability to work, being months behind on bills, etc. am under so much pressure I feel like a failure to my family and don't understand or know what to do. Found this site referenced by a support group I found on Facebook.

[Pat 110]

Hi Pippi,

Welcome! You've come to the right place...everyone is so incredible! I'm going to be 57 soon, so I see we have something else in commom. Hang in there!

Take care,
Pat

[redtail]

Hi Pippi,

welcome to our happy helpful and supportive group, look forward to seeing more of you

Kate

[maryec]

Hi Pippi
Glad to meet you, & welcome ! I have found this group to be so caring & helpful !
Mary

[ras1256]

Welcome Pippi!

You are dealing with SO much that can/will affect your emotions and conditions. Fortunately, you have found a site that has support for all of it. There are forums for diabetes and head injuries as well as our MG group.

1st - your diabetes must be very difficult to control when you can't swallow! I presume your neuro's and docs are all communicating to make sure you are covered in all areas, even if they don't have all the answers on treatments yet. If not, you need to make sure they get that way!

2nd - your head injury is as serious as anything else you're dealing with - even if you're not noticing dizziness, headache, or other problems from it, depression is a given in a head injury when you have been knocked out. Who is following you for that injury? What kind of problems do you notice due to it?

3rd - I'm not surprised you're not recovering faster on your MG than you had expected. You'll have to be EXTRA PATIENT because the diabetes will complicate things, as well as the head injury. An assault to the brain can activate the immune system (attempting to repair the brain) which is going to worsen the MG.

Please post soon, with details for the head injury, how your diabetes control has gone with all this, and what they are doing currently for you on your MG (any restrictions on MG treatments due to the diabetes, too) if you're ok with letting us know.

My husband just had a serious head injury last year, and we still see some affects from it and I have read up alot on head injuries because of that.

Also, I understand how you feel about letting your family down. I am the major wage earner in our family and I feel the same way when I am unable to keep going because of my illness/conditions. I think men just generally feel it more deeply though.

I really would encourage you to discuss your feelings with your doctor (preferably whomever is following your head injury). The fact that you can't work now is not your fault, as I'm sure you know mentally, but emotionally it can be devastating especially with everything else going on with you.

If the depression gets a hold on you, EVERYTHING will get worse. Depression and the head injury cause chemical changes to the brain (they can see these changes on MRI's now, just so you understand it's a physical thing like any other illness) which if left untreated can result in permanent damage and depression. Look at it this way - if you had pneumonia, would you refuse antibiotics because you think you should be able to cure it without help? Of course not - depression is no different, so please get on some meds for that. If you catch it early enough, once you're through the tough times, you'll likely be able to stop taking them!

I'm such a mommy hen - please forgive me but I'm concerned very much about you because of the combination of things you are dealing with.

Hope to hear from you soon! Chin up - with proper care, you can get all of this under control. You just need the right help, and a positive outlook.

Love and good wishes too you. Hope to hear from you soon!

Originally Posted by Pippi

Hey All. I was diagnosed August of last year with Myasthenia Gravis after going to 2 emergency rooms, 2 general practitioners, and eye doctor, and 2 Neurologist. I had droopy eyes,shortness of breath, could not swallow(Did not eat solid food for 45 days) and severe weakness/fatigue. I am a diabetic, so my Neuro has me on Mestinon and Cellcept. Progress has been very slow. In November I was climbing steps.fell backward and was knocked unconcious and airlifted to an Intensive care trauma unit. I have not been able to work since Nov. as I cannot climb stairs, still slur speac, and has a great deal of fatigue after writing/typing/walking for 10-15 minutes. I have found no support groups in East Tennessee and have not found any other males in this area with the disease. I am 58 years old and have applied to Social Security for disability benefits and have been denied once.(They keep sending me PAIN questionaires to fill out and I can't seem to get them to understand the disease, I was turned down the first time and have now appealed. When reading about the disease, I really thought I would be doing much better by now, but inability to work, being months behind on bills, etc. am under so much pressure I feel like a failure to my family and don't understand or know what to do. Found this site referenced by a support group I found on Facebook.