[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

[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.

[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!

[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!

[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