Anytime Lizzie!

Hi Connie!
 

Hi momma3love!
 

WHat a difference a day makes!
 

Hey Lizzie!
 

Hey dear, how are u feeling today? Sorry to hear about all that you're going through, here's a big :hug: for you. I can understand what you mean by there seems to be no end to the appointments, but hang on! Am sure it'll all be sorted out soon. Will be praying for u too!

Thanks Erin!
 

Hey Erin, thanks so much. Am feeling better today, but just returned from my appt with my neuro which was time wasting. He kept saying i'm sure it'll go away after some time, though it may be a long time. Sensed that he wasn't too keen to help me locate an answer so told him that I won't be seeing him again!

The funny thing was I was in the midst of replying the posts when I saw that I posted I was seeing the neuro today. Totally forgot about that. Finally got to the appointment 1 hr later, only to "fire" my neuro. Lol...

The day will get better!!

Great to hear Erin! There are more great days ahead too!

Hugs,
Pat

Hey Connie
 

Wow, I hope I don't forget some of what I wanted to post. There's so much here.

Erin, I'm glad you're feeling better! But, you did what you're supposed to be careful of. Just because you feel good finally, you really need to watch how much you do! That sounded like an awful lot, considering how you've been feeling. Please be careful - I really want to see you get past the point of having these really bad days! Ok - enough "mommy talk".

re: treadmills - I had one done before I was dx'd with MG and my O2 dropped like a rock, so I got sent right off to a lung specialist. After much toodoo, it was discovered that I had been gripping the handrail so hard I had cut off the blood flow to the finger that the O2 sensor was on! (HA HA). My legs couldn't handle the test, so I was hanging on for dear life with my arms - At least I now my lungs are in great shape!

Lizzie - I'm so sorry! If I could take some of your problems on myself for you I would! I wish there was something more I could do, besides let you know I'm thinking of you and pulling for you to get through all this with the least trouble possible. I'm worried you're being put through too much at one time for your conditions!

There goes my brain, but I think it was Connie that posted about the joints locking up. Joint pain isn't typically part of MG. There are lots of things - RA, Lupus, my viral condition, to name a few, that can cause jt pain, severe fatigue, weakness. I hope they get through the testing on you soon!

Alice, the marble mouth is part of the "occular" MG symptoms. Basically, it seems, when they say occular, they are talking about all things above the neck. Generalized includes the above and below the neck, so hits the legs and arms as well. Either can show symptoms in both places in seems, but the dx is based on those muscles most affected from what I have noticed. Sorry to have to tell you that. Thanks for the info on the urgent care. I hope the one you're referring to isn't the one close to where I work at I25 and 58th ave. Let me know, ok?

I have returned to work! I'm doing soooo much better now that I have the anti virals! It's amazing how fast I went to being able to walk normally, lost the pain in my back, the night sweats, gained stamina and a good deal of energy! To go from where I was, with my husband scared to death I was dying a slow death, to this is phenomenal. I wish everyone could do this - it's akin to Erin's high after the IVIG. I still have to take it easy until the immune system calms down, and am needing Mestinon in the afternoons sometimes, but WOW - what a difference this has made!

I'm going to post some more specific information about what this virus thing does. I've seen some posts here that really make me wonder if others are experiencing this, and 14 years of docs never thought to check it on me, so.....

Love to you all - hope you all have strong days today. I don't have the opportunity to check in every day as I'm trying to get as many hours in at the office as I safely can, but I'll be back!

A little snack for everyone. This check in thread is doing awesome. :)

http://dl10.glitter-graphics.net/pub...abbrknw419.gif

Becky,

I am sooo happy for you! I too am having more & more good days and having to take mestinon only a few days a week. Because of the side effects I get from it, I often just deal with the symptoms if I'm able to stay at home. Even after all these years, I still push myself too far when I'm feeling so good, and end up spending a couple of days on the couch...think I would have learned by now! haha Looking forward to the viral info. Good luck going back to work, but take it easy!

Pat

Hi Erin! It is great to hear you are feeling better and able to do so much. The day to day of this disease is mind boggling.

I did not catch any fish but everyone else did. But it was nice to be outside and relax. I just wish I would have known we were gonna be there so long and been more careful not to burn. Oh well.

Yes kidney infections are definitely the pits. They are very painful and this is the 4th one I have had in less than a year. So I will be seeing a urologist in the near future;) Keeping my fingers crossed that it is not anything too serious.

I hope you continue to feel better just try not to overdo it like me:D

Hi Becky!
 

Hi Momma3love!
 

Just a very quick check in, as I'm still at my sisters.

IT RAINED LAST NIGHT, YAY!!!! After the driest start to a year for over 100 years its finally rained. Over night we got about 50mm (over 2 inches) I stood outside in it and did a little dance.

The poor people in Queensland(a state over the other side of Australia) is dealing with huge floods and deadly winds, a man was killed by flying debri comming throught his office window! Luckily we aren't as bad as them, but have had destructive winds further north of where I live, we as yet have been looked after.
will catch up further when I get home
Kate

Hi Kate,

Happy to hear about the rain! So sorry to hear about whats going on in other parts of Australia. You hear about these things happening all over...it's a crazy world we live in sometimes. I don't know how far you live from your sister, but have a safe trip home. Take care.

Pat

Wowzers! I went away for four days and came home to 6 pages - on just one thread!! It's great to hear so many are doing well and my thoughts are with those of you having rough times (either MG-wise or family stuff). I was away at ANOTHER residential camp with my school, this time we took 120 12-13 year olds - whew!

I'm still pretty stable, have my good and bad days but am able to do pretty much whatever I want. I even was able to climb over a fence and scramble up and down muddy hills all week. I hope i don't crash this weekend. The most annoying thing was that while all the other teachers could stay up chatting and having fun i had to go to bed - I was too tired after the full days activities. A small price to pay I guess! I'm thinking about trying to reduce my pred to 35 mg every second day because at 40 I'm feeling pretty good most of the time.

All the best!
~Kathy

Hi Kathy,

Great to hear you are doing so well...good for you! I'm doing pretty good myself, so I know how you feel. Take care.

Pat

I am still around. lurking mostly. I went to a new neuro recently that gave me my MG diagnosis "back" (gee, thanks) and did some more fancy blood work that I was all normal with... hah...
I am going next month for a set of swallowing tests - the choking is really getting to me as I seem to choke more and more now, sometimes daily now. Going for the esophogal manomomatary and other tests - but I don't know what I said to the doc as he is doing the long version as well as other tests. Ugh.

Oddly, my mom got diagnosed with MG due to her wonky eyes, they gave her one (1) blood test, the achr test and a script to take 1/2 a mestinon pill every 4 hours. The blood test came back normal and the mestinon only gave her the runs - and since the dose was not high enough to help her eyes (duh!), they decided they do not know if she has MG now. She is off the pills and still cannot see.

I asked her to ask her doctors for the complete set of bloodwork at least, and to discuss more tests and she was mystified... and I said have you not paid any attention to anything that has happened to me in the past 2 years? tests, muscle biopsy, CT, EMG, SFEMG, etc? I guess not. I feel so...loved... She is in IL and I am in NJ so I guess once I hang up, she forgets everything.

I got a pair of tabby kittens. They were abandoned in a construction site - so they are keeping me busy.

Wow
 

I see what happens when I don't stay up on the posts here.

For all of you who are doing well, how wonderful!

For those of you who aren't doing well I hope you get stronger and feeling better soon.

We have been dealing with the Noro Virus here. Poor David was the first to get it Friday and was in the ER twice for dehydration. Emily got it on Sunday and Dan started into on Tuesday, now I'm afraid I might be coming down with it.

My doctor wants me to have the Pompe blood test done as soon as everybody here is better so that we are not contagious anymore. We are trying not to go anywhere until we are all better and a few days have passed. Dan hasn't even gone to work this week.

I have done some research on Pompe Disease and it just doesn't seem to fit it feels like the doctors are just taking a shot in the dark to try and find an answer. I guess that's what I'm hoping for, that they have no basis to look into this, because this is the scariest thing so far to me that they have suggested.

I can't find enough information on it to know exactly what the late onset form of it would be but everything I have read says that it is slowly progressive. To me that doesn't fit with my weak spells. The symptoms just don't seem to fit. I don't understand why they are doing this test when it has to be sent to Duke University and is a $150 blood test.

Sorry I'm not trying to vent, I'm just worried and I can't even go and give the blood for it (all they want is a dried blood spot) until some time next week when nobody has been sick for at least three days. I also have no idea how long it will take to get the results of this test.

I hope everyone is well today.

Kristie

Hi Rumpled!
 

Hi Kate!
 

Hi Dottie!
 

Hey Dottie, I'm actually in Singapore right now, and MG is totally unheard of here. There are no associations here and doctors here are just not familiar with this. Haven't been able to find a neuro who is trained or equipped to handle this, so am still searching. But there's always silveer lining when days are gloomy, so I'm glad to say that have managed to locate some trained neuros overseas who are willing to see me. Am flying over soon to see what they say. Wish me luck!!!

:D

Becky!
 

Hey Becky, its always so lovely hearing from you. =D My joints don't really lock up, its just that I find myself having difficulty controlling them sometimes, as its so wobbly. Congrats on your recovery!!!! You're a blessing to all of us here!

Hi again..........
 

I am still feeling pretty good., tired in the evening and the double vision is there when I am tired., pool is in., can't use yet.,, trying to get the steps going into the pool safe., so the contractor had to bring another set., between my husbands vision and foot and my clumsiness( my husband says I am an aflac commercial ) and MG it has to be safe....learning how to backwash and vacuum pool and chemical stuff...the contract had put a french drain and pea gravel around pool., he found out last night that would void the warranty of the pool because they consider that back fill., so he has to remove it all....oh my., I feel bad for him as he had another job to do today., so he sent his men there and then he will be here later., the deck looks good., they have to finish that., anxious to go in and relax but no can do till they are done . The weather has been nice here. Sorry to hear that so many of you are having some bad times right now with MG, you are all so great, you have helped me so much., I wish I could make the bad times go away for all of you., Take care and GO GIRL, GO GIRL........LOL

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

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

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:D, 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:rolleyes: 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!:eek: I'm really looking forward to spending time with her.

Hi Kate,

Have a wonderful visit with your Auntie...don't step in anything! hahaha

Take care,
Pat

Third time jumping in:

This forum is fantastic. You are all a joy and encouragement. I wish I had more wisdom to interact in the conversations. I usually log in, read at midnight after work. Having absorbed so much information from ‘listing’ to each of your stories, I am now prepared to go to my first yearly appointment and ask for an anti depressive.
More of my MG journey ;
Out of curiosity, I went to a local MG support group meeting in November and was delighted to see 20 - 25 people who visibly gave the impression of being healthy. I could not tell who had MG and who did not. Essentially, I liked that. I chatted with a Nurse (who accompanied the featured speaker) she was enthusiastic about the MD/MG clinic at Emory University.

I listened to the speaker as he explained what was going on at clinic and encouraged us to get involved. (Note: I listened to this doctor on Neurology Podcast and was optimistic with his position of treating MG). He explained about the drugs and treatments that may modify the immune system and how ongoing drug management might influence MG. Apparently Emory is involved in clinical studies and data collections for MG in relationship with MD foundation.

After the presentation, I personally discussed my MG and goofy immune system with the lecturer Doctor. I explained to him that I was only taking Mestinon. He replied that if and most likely, when, I end up in crises I will have wished I had been on immunosuppressant drugs. He again encouraged joining clinic. I was visualizing tube down throat and the whole MG crises thing (you guys have painted a vivid precise scary picture).The moderator of the event overheard my conversation with the doctor and kindly and respectfully makes clear to me that she had been on ONLY Mestinon for 25 years and doing just fine (she looked exceptional well).

I was anxious. I was on overload. I did not say good-bye, made a bad-mannered, quick and hopefully unobserved exit.

A few days later and less emotional, yet still perplexed by potential new options, I telephone the nurse :) at neurologist office and explained “MG clinic” and my dilemma. She listens carefully as always, tells me she will consult with Dr. and call back.

Quick call back slightly encourages clinic with big overtones of caution using other perhaps unneeded strong drugs (Note: From the on set, I let the doctor know that I was not much on medication). Therefore, I gave myself a wait and see approach.

Now I am waiting, working about 60 + hours a week over 6 days. Pacing my Mestinon and me carefully over 6 days and crashing on the seventh. My home is a mess; social life has disappeared. Quality of life is zilch. Enter depression - or my ADD has overtaken ability to concentrate on anything other then coping daily. Maybe both, I can usually get a handle on the ADD stuff and I can usually handle bumps on the emotional stuff but I cannot seem to do either with the MG interference.

Interestingly over the past 5 days, almost all MG symptoms have disappeared. No Mestinon for 3 days. I went for a (reminiscent of pre MG) energetic over a mile walk Wednesday night, I was euphoric. I know MG is incurable, I know it can go into remission, I am caustically optimistic. Nuro appointment this Tuesday .

As I read this forum each day and learn your stories and struggles, I am moved to tears.
Blessings to all,
Christy

Note on messy house:
After sweeping patio with the leaf blower, I had the idea to dust the baseboards inside the house with the blower. Do not try it; it is not a good idea.
Note 2, I liked watching the Utube interesting MG videos.

Today is still a good day!
 

I went back to work on Monday....and worked 4 days....and took today off....I did not want to push myself to working 5 days this week!

I had my massage on Monday evening....but I drunk tons of water, took a cool-warm episom salt bath, and went to bed. I felt tired that next morning...but I felt more relaxed. But,my leg muscles were very tired...like I had been walking all night. :winky:

Relaxed, great feeling massage....vs....tired muscles the next day.....
I sure did enjoy the massage!:rolleyes:

Really, my tongue feels like it has gotten fatter...and the inside of my mouth/ cheeks have changed --either fatter or more relaxed feeling...and I am always sooo worried about my breath....When all of this started, I was so worried about oral cancer or throat cancer.....but my dentist said that my gums, tongue, everything looks healthy. Thyroid is healthy and normal too...thyroid uptake did show mild hyperthyroidism...but nothing major..

I didn't realize that this could all be related to occular MG..

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. :D 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!

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!

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.

Hi Rumpled!
 

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.

Hi Pippi!
 

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.:D Hang in there!

Take care,
Pat

Hi Pippi,

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

Kate

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

You have a load!
 

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!:hug: