[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

Originally Posted by rumpled

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.

[erinhermes]

Rain?!? Glorious rain? Beautiful rain? YAY!!!!!!

How is it going @ your sisters? Are you having fun dog sitting?

The weather over in Australia sounds as extreme as it is here in Texas - it can be 30 degrees in the morning and 90 by the end of the day! Not so great for us with MG!

Mike and I are still trying to decide where we are going to retire......no idea just yet but we have plenty of time to worry about that later!

I have been taking it ez today - really messed up my back last night........

Hope you are having a GREAT day!

Big, big hugs!
ERin

Originally Posted by redtail

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

[ConnieS]

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!!!

Originally Posted by korbi_doc

Connie, where are you in the sunny south?..are you going to find another neuro after firing this one? You need to have someone on board who really cares enough to help you out that's for sure....good luck & let us know if you find one.....

Dottie

[ConnieS]

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!

Originally Posted by ras1256

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!

[whirlwind123]

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

[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.

[Pat 110]

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.

Hi Kate,

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

Take care,
Pat

[Christy]

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.

[cricket001]

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.

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

[cricket001]

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..

Originally Posted by ras1256

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!