NeuroTalk Support Groups - "Check In" Thread

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Quote:

Originally Posted by Maxwell'sMom (Post 512413)

Thank you Pat, I sure appreciate those prayers.
:hug:
Love Lizzie

Anytime Lizzie!

Hope you feel better soon, hon! I know how it goes, one day you are on top of the world - crappy the next.........it will get better!
Big hugs!
Erin:D

Quote:

Originally Posted by ConnieS (Post 512089)

Yay! I'm going to see my neuro tmr and I've prepared a list of qns which I've learnt from all of u, to ask him tmr.

Am feeling extremely tired now after a conversation with my friend, its the mouth thing again. Do anyof you feel that your energy is being zapped from u with every task you do? My eyes keep watering, look as if I've not slept for days. Haha.. But today's a great day nevertheless!

Feel like my brain's not working now, am not processing properly, so pardon me if i'm not responding correctly to your posts..

Can't wait to hear from how everyone's doing. Am gonna go rest in bed now.. Can't take it animoreeee.... Lol. Check in tmr again!

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?:D

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

Hang in there!
:hug:Erin:hug:

Quote:

Originally Posted by momma3love (Post 511997)

Ugh...Well I still have a kidney infection. I went to see my regular doctor Tuesday to recheck and get this they lost my urine. I did not know until Friday when I called to find out what was going on. I had too full of a weekend to go to urgent care to get it all checked out. Which I had to really push myself to get through. I am really sure I still have an infection. My kidneys still hurt and I was retaining water over the weekend. So tomorrow I go back and hopefully they will get it right this time. Other than that my oldest son has strep throat which I get super easy. I have had a sore throat for awhile now but did not think much of it. So gotta get that checked tomorrow too.

On top of all that I got too much sun today when I went fishing with my boyfriend:o:( So obviously I am gonna pay for all of it at once. My stress load has also suddenly stacked up too high:(:( If only I could work life would be a bit simpler. But that would all take far too long to explain. :o

On the plus side I am recovering from surgery pretty well. I could almost swear I have already started to feel better. That might just be cause its easier to breathe without my huge thymus. :cool: And I think a coincidence, you know how the MG likes to play games of hide and seek. Well mine does every now and then.

I hope everyone is well or getting better:hug: Take care everyone!!!

WHat a difference a day makes!

Hello all! Saw my oral surgeon today, went shopping for my hubby AND made dinner! It was a GREAT day! Yesterday I was unable to get off the sofa and slept 16 hours, but today has been awesome!

I hope all of you are doing great!

Big hugs!
Erin:)

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!

Quote:

Originally Posted by Maxwell'sMom (Post 512392)

I've been Over-whelmed to say the least. For the past 9 weeks now, I've had at the very least one appointment per week. But for the most part, it's more than one. One usually kills me, but like last week, I had two doctors appointment, and then on thursday a Kidney biopsy.

Tomorrow, I have an Iron Infusion (1 1/2 hours for infusion) And then I have a doctors appointment with my neuro afterwards. Iron infusions can make a person feel like they have the flue for a day or so. Not a good feeling.

I'm not seeing an end to all the medical stuff right now. In a couple weeks, I have to have another exercise stress echo ( a specail echo done to check pulmonary pressures) I dread this one, it knocks me right off my feet for days on end.

And in the mist of Kidney testings, infusions, and regular appointments, I have to have a root canal, gums scraped..thank you prednisone for that one. I just can't seem to get a head of it all. Too much! Just too much.

So, I guess, I'm tired. Really tired, and don't have much energy right now. Every time I refill, I have to drain it out.:rolleyes:

thanks for listening
Love Lizzie

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!!

Quote:

Originally Posted by erinhermes (Post 512502)

Hope you feel better soon, hon! I know how it goes, one day you are on top of the world - crappy the next.........it will get better!
Big hugs!
Erin:D

Quote:

Originally Posted by erinhermes (Post 512507)

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

Hugs,
Pat

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

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. :)

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