LOL! do you drink beer now? steven loves is beer but has cut it off quite a bit almost to none. You do have a sense of Humor. Tell me the story of the IV.

Did I ask you if you had your thymus gland removed? They found a shadow around his but they did not recommend surgery. They say removing the gland could possibly help with MG???? But very invasive?

I'll have an occasional beer, but prefer wine. Probably a good idea that he has cut back his consumption until he knows how his body deals with the meds. Some people will get a red flush of the face after drinking if they take mestinon. It's usually harmless. Others here can't tolerate any alcohol. Be sure to check his meds for any interactions with alcohol.

I had my thymus gland removed when I was 37. I had no choice since I also had a thymoma. A thymoma is a (usually) benign tumor that occurs in 15% of cases. I posted a link to information regarding thymomas on the "thymoma" post here. It can be an invasive surgery, but there are other methods. I had mine removed trans-sternally, the most invasive. I questioned my surgeon and he said that he preferred a "wide view".

The jury is out on whether the thymus should be removed (without thymoma). Some claim it can lead to a drug-free remission, other studies say no difference.

The "shadow" thing should be watched closely. Was the shadow found on a X-ray or a CT scan?

I'll post my IV removal story later or send it to you privately. This thread should be about Steven and not me.

Take care,

Jim

Its ok this is about all Mgers. I like hearing stories.
Yes he gets flushed if he has 2 beers. The shadow is being watched it was found in a ct scan along with 3 nodules on thyroid(non related) two were biopsied the other is too close to the coroid artery and because of the Pred he was too fidgity the endocrinologist wants to sedate him with some valium or xanax before he does the 3rd one. The 3rd nodule is questionable.

He had lost 12 lbs a while back because of the swallowing and chewing and choking. Now that the pred is working he is gaining weight and eating lots of sweets. Im concerned with that. I dont want he to develop adult diabetes.

What are your thoughts on that?

My thoughts would be highly hypocritical, and that I should practice what I preach. I'm eating holiday cookies, candy and junk like there's no tomorrow and I come from a family of type 2 diabetics (I've dodged that bullet, for now). I've gone through the same thing Steven's going through, it's a side effect of the Prednisone. I've gained 20 lbs in the last year due in part with the increase in pred.

If it hasn't been done, I'd have his glucose tested along with a lipid panel (cholesterol, etc.). Prednisone can alter these numbers. Both tests require fasting. Yes, I had mine recently tested and all were normal, whew!

I'm sure fruits and vegetables die a slow death on your counter as they do on mine, but I try to hide all of the junk in the 'cupboard of shame' in the kitchen. It takes away from the visual stimulation. I also try not to eat directly out of the box or bag, instead pouring snacks into a bowl. It makes you aware of your intake if you keep going back for refills.

Can he do any light exercise?

Jim

His blood work came normal before he was diagnosed in Sept. Yes the fruits and veggies die a slow death in the frig. He only eats bananas! Pie,cookies,devil dogs,and pop tarts. LOL!

He can do light exercises but doesnt. He sits in his recliner all day and watches tv and eats. He typically is very hiper an is a mover and a shaker! But not so much anymore. His weakness is getting worse and the snappy attitude is just horrid! Im on SSDI myself for spine surgery that failed and also collecting LTD so I cannot go out and get a PT job but if I could I would. Just to get out of the house for a while. He is driving me nuts! The Pred is an awful drug.

I'd kill for a strawberry pop-tart with pink icing! But, it's one of the nutrition bombs I did give up.

I'm concerned about him getting weaker. Has his Prednisone taper been addressed? This could be the cause of the weakness if it's going too fast. I'm sure you both want the Prednisone to end, but it does have its place for those who can tolorate it. I'll be the first to agree that it smells, tastes like ***** if it gets stuck on your tongue, makes you fat and bitchy, etc. If he still has insurance you might look into a course if IVIG. I have no experience with IVIG, but many here rely on it. In retrospect I probably should have tried IVIG during a flair-up rather than to have taken all of the pred for all these years. I'm now trying to cope with the long term side effects (not to scare you).

About you: Are you physically able to leave the house? If so, have a buddy of his come over and watch a game with him while you have a "girl's night out." Here's a link about caregivers from Quest magazine:

http://quest.mda.org/categories/caregivers

Jim

My father started having problems talking back in July this year, doctors thought he had a stroke, couldnt confirm because they couldnt do an MRI due to my Dad's pacemaker. Long story short, 5 months later and my Dad chokes, can hardly breathe, cannot walk, cannot take meds. It took going to the emergency room 3 times (last being last night) to get them to wake up and do something. A cardiologist came in and did some testing and said he thinks its MG. Got home last night and googled MG. OMG..he has every single symptom. He has slight pneumonia because food particles got in his lungs so he spent the night at hospital. Even though I am still very very scared and nervous for my Dad what a relief to find a diagnosis. I know we are on a long road of recovery, my Dad is 79 and I am hoping he is strong enough to get through this. I live in NH too and for some reason just wanted to share this with you.

Welcome lylah.

Welcome Lylah - I hope your Dad is improving. Pls remember that even just socializing with family can be sap a lot of energy from an MGer. But now that you have dx, I hope things will get better quickly. What meds have they started him on?

Miasmom, I wouldn't push the exercise thing at least until after he stabilizes. I have a mild case of MG and I tried exercising for the first 3 months and it just made me more wore out and it also didn't give me a true measure of where I should be with mestinon. I was taking too high a dosage and that made me worse as well. After I quit exercising I was able to take half the dose and my droopy eye along with my throat tightness have all but gone away. I still don't exercise now as I work full time and I have a 2 year old granddaughter that lives with me. That is all the exercise I can handle. I am also 55 and was diagnosed Thanksgiving weekend of last year.