[maryec]

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

[Pat 110]

Originally Posted by redtail

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

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

[Pat 110]

Originally Posted by maryec

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 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

[AliceH]

Originally Posted by ras1256

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.

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.

[Pat 110]

Originally Posted by AliceH

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.

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

[Pat 110]

Originally Posted by cricket001

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

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

[Pat 110]

Originally Posted by Brennan068

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

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

[Pat 110]

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!

[Brennan068]

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 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.

Originally Posted by Pat 110

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

[Pat 110]

Originally Posted by Brennan068

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 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