[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]

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

[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!

[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.

[Brennan068]

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.

[erinhermes]

Hello and welcome to Neurotalk! You are gonna love it here! There are so many amazing, wonderful, supportive people here with tons of info!

MG is a RARE disease - that's prolly why you haven't found that many people with it where you live - lucky us, huh?

But the GOOD thing is that you have been dx'ed - now we just need to get you WELL! You are not letting your family down - you are SICK! YOU need help, not scorn. Sadly, few people know anything about MG and how it effects us - feel great one minute and down on our backs the next.

Take a deep breath and make sure your neuro knows that you are still weak----there are lots of options for us now! IV IG, plasma exchange, pred, imuran, etc......You just don't want to over do it and pay the price! I speak from experience on this one!

Stress makes MG worse - sad but true. You need to stop beating yourself up and start taking care of yourself! It sounds like you need a support group - well you've got one now! We are all here for YOU! If you need to vent, vent away!

I'd love to hear from you when you have the time/energy!

Erin

I was given Paxil by my neuro - he said a lot of people with MG suffer from bouts of depression as well!

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.

[Pat 110]

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. Hang in there!

Take care,
Pat

[redtail]

Hi Pippi,

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

Kate

[maryec]

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