[Maxwell'sMom]

Alice,
A Steamy shower can cause him to exascerbate even further.
I'm so sorry he's having a tough time right now.
Much love Lizzie

[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

Originally Posted by AliceH

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.

[Brennan068]

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

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

[ras1256]

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!

[ConnieS]

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.

[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 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

[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 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]

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!