"Check In" Thread
 

How about we try this? Maybe everyone can check in and let us know what's going on with you...using this thread. :grouphug:

Hey
Stephanie, great idea.
I will start, as I'm having a really icky day. Its comming up to that time of the month, and my body is just not working properly, fingers don't want to type, and just getting up and dressed thismorning was an effort!!!!! All I want to do now is cry, have a really good bawl................which will pass, but its good to come here and put it all down, somehow it makes me feel a little better.
think I'll go water my garden now
Kate

Hubby started on mestinon and prednisone week before last. The prednisone's making him emotional, and he's got a viral upper respiratory infection that started Friday. I'm nervous for him. The mestinon dosage is only somewhat alleviating the ptosis. He goes in for a rep stim test next Friday to determine whether it's ocular or generalized. Still waiting on insurance approval for the chest CT and the brain MRI.

He's had a couple of short periods of time when he's had trouble talking, his words slur, we don't know if it's the medications or a new symptom.

Hi Alice, yep pred can do all sorts of wierd things. With respiratory infections, better to get to a dr and get it sorted out, so breathing doesn't become a problem. What dosage of mestinon is he on, and can he speak to the prescribing dr to see if he can up the dosage??

I know when Iam tired, fatigued my speach can become slurred.
Kate

I took him to urgent care today as a precaution, they didn't seem TOO concerned (concerned enough to check his oxygen levels, said we weren't overreacting, but said he just needs to rest and drink fluids and take steamy showers). We're meeting with the neuro before the rep stim test on Friday to discuss whether he's going to stay on prednisone long-term (which may be moot if the rep stim test shows he's got generalized MG), we're going to ask him about his mestinon levels then. He's on 60mg three times a day, just as a trial. His neuro doesn't believe in doing Tensilon, so the mestinon was also for diagnostic purposes. From what I've read, prednisone can interfere with mestinon working.

He wasn't fatigued when his speech was slurring, the first time it was fairly early in the day. The second time was on a business trip, I can't speak to his fatigue levels then, but I don't think he got enough sleep the entire trip.

Kate,
I am so sorry you have had a bad day!:hug:...but you are right...It makes me feel better to write it down and share with people who understand!

Alice,
He will experience many different things....just be patient and loving...My hubby has been there for me...and that has meant the world to me. I truly know what "love" feels like!
I have trouble with my speech and I slur at night...or "mumble" as my hubby says. My tongue feels big and I just can't form my words well...

Right now, I think I am in the honeymoon phase because the IVIG has kicked in/ side effects from IVIG gone... and I have energy...just do not know how long it will last...before I slow down and need another treatment. I haven't felt like myself in a long time...and I have been myself for 2-3 days now!

Stephanie

LOL Marble mouth, I know it well :D. Mine took about 6 months to completely go away after the thymectomy.

Hi All -
I've had my granddaughter this weekend and we played a game, cooked breakfast together, laid around watching TV together..... had a wonderful weekend! I'm so glad we got me lined out enough to do all this before she moves to Minnesota in two weeks. Since the end of January every time she came to stay it was me on the recliner and she and her Papa doing stuff. She was very understanding, but I can tell it upset her that I was so bad (she's 9, going on 13).

Stephanie - I'm so glad the IVIG has worked for you after all! See, you can feel better with MG!!!

Kate - Sorry you're having troubles - that's one good thing about being OLD - I don't have the monthly drain anymore!

Alice - The slurred speech is a common problem with MG. I generally have to get real tired before that starts on me, but I know a guy that the eyes & slurred speech are his normal symptoms that start right away when he's having problems. I hope the neuro has a good answer for your honey on this! Where did you read about the Pred. interfering with the Mestinon? I've not heard that one before, and it's a very common treatment combination early on. I'd be interested in seeing the website if you can remember. Also, which urgent care did you go to? Were they familiar with MG? or just looking at his condition as a possible flu. I work close to your area, so it would be good to know if they are familiar with MG.

Brennan - I haven't had a lot of interaction with you, but I hope you're doing real well!

Hope all are either doing well, or get better soon! I'm in heaven to have such a quick turn around on myself. I have needed to take Mestinon in the afternoon is all, and still take naps, but WOW - am I better!

Hi everyone!
 

Wow great idea Stephanie!

Am having a lot of problems typing now, used to be able to type very fast without having to stop or press backspace for typo errors but have to do it a lot now.. Energy's like a roller coaster, am surviving, but I get so excited whenever I feel like I have enough energy for a walk outside. Even rolling around on my wheelchair's an effort now, arms are becoming weaker.

But life's great, thank God I can still swallow without much difficulty and my face seems to be becoming more symmetrical, instead of one side drooping.. Lol.

My sons 30th birthday was Sat., he lives in AZ though, I got my hair cut short, all the highlights are gone now. Sun, hubby brought me to the new Ikea, just built here in FL., it ended up being to much for me to do, & am stove up today. Well the old saying goes, If your gonna play you , you have to pay, & pay I am !!! Neuro's office dropped the ball, on setting up my IV pred. treatment, I am seeing him wed. the 20th, & will bust them though. I used to stay on them , & had to deal with there attitudes when I called, I'm not doing there job for them anymore, & will just tell the Neuro, I never got the treatment, let him deal with them. Still eating as much as I can, to try & keep from loosing wieght, I think it is muscle loss though, as I have fat on me. Which would go along with the neuropathy, & myopathy found, also the trouble with my malabsorbtion.
Great Idea for this thread, Stephanie !!!
Mary

Hey Kate,
Hope you are having a better day today...crying is a good way to relieve stress!
Pat

Hey Mary,
Sorry to hear they messed up your treatment. I know what you mean about the attitudes when you call an office. Not easy to deal with when you're not feeling good. Good luck with the eating...I have the opposite problem. (: Feel better.
Pat

We use the Boulder Medical Center urgent care in Boulder. They were knowledgeable enough about it that they were checking on him pretty regularly in the lobby to make sure he wasn't taking a downward turn, and the doctor seemed to at least know what it was and to be what I considered adequately concerned. She also inquired about how he was doing mentally and emotionally with the recent diagnosis. Since our GP group is also BMC, the medical records from urgent care visits go straight into his medical record, no need to have them sent over. Unfortunately, the BMC urgent care is not a 24-hour facility, but we've always gotten more than competent care there, for everything from pneumonia to a sliced-open finger. There's a 24-hour urgent care not far from our house, that shall remain unnamed because I have nothing nice to say about them - it should give you an idea how much more I trust BMC given that it's almost a 45-minute drive there.

Whatever doctor's reference the doc was using to look up drug interactions and side effects before she wrote his scrips said that prednisone can cause the mestinon to not work as properly. They've got it hooked up so they can look up things on a PDA rather than dragging books around, so I didn't see the title of whatever they were using as a reference.

I'm really hoping that the marble mouth is due to the medications and not due to the MG - somehow I don't think that marble mouth would be considered an ocular symptom. We're still crossing our fingers that he's just got ocular MG.

Hi Alice,
Slurred speach was a major symptom for me even when I wasn't fatigued. Sounds like he's on the right track and with your love & support things will get better...it takes time.
Pat

Hey Stephanie,
Good to hear you have been feeling like your old self! Things will continue to get better...maybe some bumbs along the way...but you'll get there! Great idea in starting this thread.
Pat

Hey Brennan,
Mine took about a year after surgery...I celebrated! haha
Pat

Good news
 

Ever since I had my thymectomy I have experienced chest pain on the right side. Sometimes doing just light lifting will cause them. My neuro said it's from nerve damage that causes pain in the chest muscles. I remembered reading that could happen when I signed the consent forms. However earlier this month my husband and I went to California to visit our son and he took us to the San Diego Zoo and after a short time of slow walking, I got them on the left side for the first time. It only lasted about 15 minutes, but it scared me. I've since had it happen several more times. I saw my GP the day after we got back and he sent me to a cardiologist which I saw this morning. I forget the name of the test he did, but he first did an echocardiogram then a stress test on the treadmill, and while my heart was still pounding, he did another echocardiogram. He said my heart is fine!!! What a relief. He said the nerves on the right may have somehow connected to the left side, but he's not sure. I see my GP again the first week of July, so I'll see what he has to say. I'm not too concerned about it now. I had to laugh when he said I lasted longer on the treadmill than he thought I would. A few years ago with the MG, I wouldn't have even gotten started!

I imagine :) I was some happy to have mine go away.

Now if I can only get the swallowing issue completely dealt with I'll have a huge celebration of Thai food and Martinis :D Spicy foods are still a problem for me which really is a pain because we have a great Thai restaurant in my town... I miss it.

Hey Brennan,

I'm pretty new here so I'm not familiar with your situation. I use to have the choking & swallowing problem a lot, but fortunatly it only sneeks up on me once in a while now. Of course you don't know when it's going to happen. I love Thai food too, but I can't eat it anymore...not because of the MG...it's an age thing now! When did you have your Thymectomy? I had mine in Nov.02

Pat

Hey Pat
 

I developed MG in the fall of '07 - symptoms were light and only showed up when I was very tired... they went away after sleep so were attributed to just being tired. By the spring of '08 I had full blown ptsosis on left side, marble mouth and couldn't swallow much of anything. I was diagnosed in April of '08, had my thymectomy in May of '08 and spent until last week recovering from the thymectomy, radiation therapy for the thymoma, pneumonias from the radiation burns and excessive weight loss.

The ptsosis went away immediately with the thymectomy. It was gone before I was out of hospital. The marble mouth was next to go at around 6-7 months or so and the swallowing is gradually getting better over time. I constantly try things that were "impossible" a few months ago to find that they work fine now. Spicy foods still jam up the swallower though... that'll come with time ;)

Last week I started a graduated return to work; half days for a month. I'll be moving up to 6 hour days in 3 weeks and do that for a month and then to full 8 hour days. The 4 hour days are great :) . Go in for 8, go to the gym at 12 and then home to sit on my deck in the sun with a cool beer. :cool:

Brian

Hey Dottie,

Isn't it amazing how someone says something and you get one of those, 'Wow' moments?! I've had a few myself. Hope you are feeling well.

Pat

Wow, you've come a long way...good for you! You have a great attitude which goes a long way in the recovery process. Being active is something I've slacked on, but I'm starting to walk around the nieghborhood which is a good start. Going back to work may tire you for awhile, so get lots of rest. I have the feeling you're going to be eating that Tia food in the very near future!

Take care,
Pat

Tired, tired, tired!
 

Hi Brennan!
 

Isn't it amazing how far you have come? :D What an inspiration for the rest of us! I love to hear stories like yours - they always give me HOPE!!!!!!!

So, you are finally given the green light to return to work? I bet you are going to have a blast! I know I miss it, but right now it just isn't an option - just too hot here for me to get out...........

I know what you mean about the thai food - used to love spicy food but cannot handle it now - I wonder why?

Big hugs!
Erin:D

[QUOTE=erinhermes;511830][FONT="Book Antiqua"][SIZE="3"][COLOR="DarkGreen"]Stephanie - what a GREAT idea! Look @ go, girl! This is AWESOME!!!!!!!

I am tired of being tired! I have been sleeping 14-16 hours and wake up tired! Granted, I'm sure it has something to do with my 4 teeth that are infected, but I am getting sick of it!

At least I was able to give Mike a bday party!:D Yay!

He was soooo cute! You should have heard him! What a hubby!:D

I go back to the hospital on June 1st for my last round of IV IG and my pred is going to be reduced to 20 mgs a day, so hopefully I will start to look like myself again - I've got to lose those "pesky" 40 lbs that I have gained! LOL:D
I hope everyone is having a good, STRONG day!

Big hugs!
Erin:D
Hey Erin,

Glad to hear your last round is coming up and the pred is being reduced. You'll be looking like you old self before you know it! Hang in and feel better soon.

Pat

I'm heading off to my Sisters to babysit dogs for a couple of days, so will be offline for a few days. Will be back at the end of the week.

Hi Redtail!
 

Hi Pat!
 

Hi Pat!

Thank you for your kind words! I really appreciate them! Just feeling sorry fo myself today - hate that feeling! Should be doing something "useful" with my time - just don't have the energy!:(

If I don't feel better by tomorrow, I'm gonna call my neuro and see if I can have my IV IG bumped up to next week! I love that man!:D

How are you feeling?

Big hugs!
Erin




[QUOTE=Pat 110;511838]

Happy dog sitting Kate! Enjoy your visit...talk with you when you get back

Pat

Checking in........
 

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!!!

Checking In...
 

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!

Connie, Talking is a big drainer on me also, I have to excuse my self after a while, when I get calls from my talker friends, or mom. They just wear me out, my speach & energy still goes after a awhile. I know they get dissappointed, but they keep calling so they must understand !! LOL.........
Mary

Checking in
 

Hi everyone.,
I have finally tapered off the prednisone., so I was feeling a little tired from coming off of it, but I am feeling so much better without the side effects of the prednisone. My lymph nodes are a little swollen but I know they will go down eventually. We are in the process of getting an above ground swimming pool., with my husbands health problems., it will be good exercise for him he loves to swim. I am not a swimmer but I like to splash around. So it should be relaxing. I know I have to watch the heat and sun. So, I am actually feeling pretty good, when I am tired I rest., the vision is a little blurred gets really doubled at night, in the evening., but I feel very fortunate, especially after I read what all of you are going thru., right now it seems my symptoms are mild. Still waiting to get into the good neuro.,and I am not going back to the bad neuro, but my GP is taking good care of me. We are supposed to have a nice week here in Ohio., so I am hoping so, I feel so much better when it is clear and sunny out., we have some beautiful scenery from our back so it is nice to just sit and look out and relax. So that is what is going on with me. :winky:

Whirlwind, great to hear from you, I am glad things are going ok for you, I hope they stay that way, so you can get set up with the new Neuro.
The pool will be fun to have, I love getting new stuff !!!! LOL.....
Mary

[QUOTE=erinhermes;511963]Hi Pat!

Thank you for your kind words! I really appreciate them! Just feeling sorry fo myself today - hate that feeling! Should be doing something "useful" with my time - just don't have the energy!:(

If I don't feel better by tomorrow, I'm gonna call my neuro and see if I can have my IV IG bumped up to next week! I love that man!:D

How are you feeling?

Big hugs!
Erin




Hey Erin,

I've just logged on so I haven't read any updates yet. I hope you're having a better day today. We all feel sorry for ourselves once in awhile and then it passes. I've had many of those days myself. I'm feeling good today, thanks for asking. My leggs hurt from walking the treadmill for so long at the cardiologists yesterday, but not too bad. I can't blame it on the MG, I'm just really out of shape...then again maybe I wouldn't be so out of shape it wasn't for the MG! hahaha Take care.

Hugs to you too!
Pat

Over Whelmed
 

Hi Lizzie,

Wow! I am so sorry you have to deal with sooo much stuff all at the same time. You must be exhausted. Try to rest as much as you can. You know we're all pulling for you and I'll keep you in my prayers. Hang in there!

Thanks for sharing,
Pat