[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.

[ras1256]

OK, I just tried to answer everyone else, but took too long I guess. I'll try again in a few! Also, intend to get the virus details posted tonight, so check back soon!

Love ya all!

[ras1256]

One more time!
Hi All - I'm gonna try to type REAL FAST so please forgive typos!

Christy - Love the leaf blower idea I never would've thought of that, and I guess I should be glad you thought of it first! My hubby doesn't do bathrooms or baseboards, so it may have occured to me sometime. I hope you are going into a remission! That would be so wonderful, but remember it could be the "ebb and flow" thing so be watchful so if you start weakening you don't over do it. We'll just keep pulling for the remission thing though - GOOD LUCK!!!!!

Kate - the "snarling" got a good giggle out of me - what a mental picture I had! It's amazing how the body compensates for things without us even knowing it's doing it, huh? Hope you have a great time at your aunts dairy farm - my grandma had a farm that I would spend a couple of weeks every summer at as a child. What fond memories! Enjoy and relax and get rid of that droop while you're there, huh?

Connie - it's very interesting to me that MG is virtually non-existent in Singapore. It makes me wonder what's different in the diet and lifestyle that saves them from it! I'd read that the closer to the equator one spends their first 15 years the less chance of developing MG, but there has to be more to it - surely they're just as mobile there as the rest of the world. Good luck with the overseas trip to see a neuro - I hope you get a good one that can get you your dx and treatment in short order!

Rumpled - Re-dx'd - I've been there, and still it's questioned. So frustrating, I know!
With your mother showing signs, have your neuro's considered Congenital Myasthenia on you? The mechanics are different - not an autoimmune but a genetic cause so it won't show in the blood but will on EMG or SFEMG. I can relocate a link for you if you'd like and post it for you, but I think it may be a possibility. That might also get your mother to another (yours?) neuro for further testing. Also, hope the kittens are keeping you entertained. I know our two pups make me laugh just watching them, and that's good medicine you know!

Whirwind - I'm so glad to hear you're doing better. You seem much more relaxed in your post. That swimming pool sounds awesome and I hope it'll help you too - I know when I am in cool water I feel so much better and my stamina is a lot better! As for being an Aflac commercial - don't feel bad; my dad always said I was like a bull in a china cabinet! Maybe I do have the congenital MG if I was always clumsy!

Stephanie - AAAHHHH Massage! Love it. I have found the best CMT ever! I've seen a lot of them, but she really tailors the massage not only to your med problems, but to how I'm doing from one day to the next. I swear she has magic in her hands, because I come out walking better an energized after seeing her - even in this last serious bout I've been having. I'm a little concerned over your post about your tongue feeling thicker, though. Be careful with that, because it sounds like your weakness is maybe spreading? Watch for choking and breathing, and rest whenever you can!

Erin - Hi, baby! I hope I wasn't too stern on my last post. You know it's just cuz I loves ya, and don't want to see you be your own worst enemy! As for the situation with your dad, I think you're right but fighting the whole fam is tough - especially when you have health issues to deal with for yourself! Can you call a pow-wow and present them with some choices, such as put him in assisted living (they're wonderful, by the way - a way to keep their independence while being watched over - make sure your fam knows you're not talking about a nursing home), leave him where he is, but with a stipulation that other family memebers have to check on him by phone or in person on a REGULAR basis and help with his bills - if they can't pay they shouldn't have a say! (in my humble opinion); or leave things as they are and everyone takes a chance that it could turn out very badly. Maybe some literature on the assisted living, and some input from his doctor would help? I'm sorry you are in this position. It's such a hard thing to have to do when you don't have support from at least the majority of those involved. I wish you a lot of luck in dealing with it. Keep us informed!

Kristie - I so hope you are right and the pompe isn't a good fit. It would break my heart for you and your family! I hope you all get feeling better real soon with the virus - get as much rest as you possibly can, ok? And be sure to let me know when you have the test, and then when the results get back. You know I'll be thinking of you and praying for a good result! You're much too young and too sweet for any other outcome!

As for me - I went back into the big bad world and......

caught the FLU! First day back to work I ended up in the same room with an employee that was running a 102 fever and was "really sick" but came in for a seminar on our profit sharing account change! Sure enough, it got me. My trusty neti pot and some vicks vapo rub seem to have helped me get over it quickly though!

I'll be going to see my mom the first time since Xmas tomorrow with my daughter, Angie and granddaughter, Alexis. I can hardly wait! Then, Monday we are having a b-b-q for both Memorial Day and as a farewell to Angie and Alexis. They are moving to Minnesota for a while so my daughter can get back on her feet. She has people there with connections for a place to stay rent free while she gets back on her feet, and job connections, as well as someone to watch Lex no matter what kind of shift she has to work. It's actually her ex husband and his family - good thing they kept everything real friendly! And they all love Lex, so I'm good with it - sad to see them go even for a while though .

Gotta get this posted before I time out again! Talk to you all soon - Have a great week-end!

[ConnieS]

Haha.. Such a sweet person you are, replying all of us!! And thanks so much for that long long post!

Yes, MG Is virtually non-existent here, there are people with MG but so far they've had to go overseas to get it diagnosed properly. Probably there are others with this, but hve not been diagnosd and have not been so lucky in their research. Just found someone who had to go through 4 crisis and few years before she got diagnosed. Diet and lifestyle?? Hmm... Less starch and more vegtables? Or it could be the sunny weather that we get here. Thanks so much for the luck! I need it!

Originally Posted by ras1256

Connie - it's very interesting to me that MG is virtually non-existent in Singapore. It makes me wonder what's different in the diet and lifestyle that saves them from it! I'd read that the closer to the equator one spends their first 15 years the less chance of developing MG, but there has to be more to it - surely they're just as mobile there as the rest of the world. Good luck with the overseas trip to see a neuro - I hope you get a good one that can get you your dx and treatment in short order!