[Pat 110]

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!

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

[momma3love]

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

Originally Posted by erinhermes

Sorry to hear you are feeling so poorly...I've never had a kidney infection but from what they heard, they are th pits!

Did you catch any fish? What type? Did you have fun?

I know I felt pretty great after my thymus was removed! It was wonderful!

Hang in there!
Erin

[erinhermes]

Hey hon! You are so right! After yesterday I am a bit tired, but still proud of what I did!

You are too cute - you are a mama hen - I love that about you!

I use a treadmill as well - that is when I feel well enough. It hasn't helped with the weight so far but I do feel like I'm getting stronger - now once the PICC line is gone I'm going to use little 2-5 lb weights to help my arms - flab everywhere!

Big drama going on in my life right now - dad fell while trying to walk to the bathroom (had a massive stroke years ago and still hasn't recovered) - needless to say it was horrible. Evil ex-stepmom who still takes money from him called my little sis to chew her out.....mom picked up dad who is now stating with lil sis until we can find him a place of his own- he needs to be in assisted living but refuses and other members of my family will fight me tooth and nail to keep him from it but won't help me pay his bills - what are you gonna do?

I have got to keep my stress level down, but this one is a doozy!

What do you think?

Big hugs!
Erin

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!

[erinhermes]

Yep! It felt GREAT! I am paying for it today - a bit, but 2morrow will be better!

How do you know when you have a kidney infection? What are the symptoms?

I looooooooove the fish! My hubby found a trip to Alaska on barter and we plan on going within the month......it will be great to get out of the Texas heat! I am a bit scared - don't want to be away from my neuro for too long, but Mike really needs it! Did I mention that Mike loves to travel? He simply needs it to get away from the hustle and bustle of real estate - when we are here the phone rings all the time -though it could be a lot worse!

The ONLY positive about having MG is that it makes me appreciate everyone and everything that I am ABLE to do!

How are you today?

Big hugs!
Erin

Originally Posted by momma3love

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

[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

[Pat 110]

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

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

[Scots Kat]

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

[Pat 110]

Originally Posted by Scots Kat

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

[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.

[nemsmom]

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.

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