[Nicknerd]

Hey guys,

Went to see another MG specialist today in London. He put my worries to rest sorta in regards to the immunosuppressants, and I'm going to start Imuran tomorrow.

He said that my MG is very bad (I was extremely tired today- had to get up really early for the drive- and my speech was really slurred/super nasal, couldn't make facial expressions, etc.), and even though prednisone isn't helping all that much, it's keeping my immune system at bad at least a bit, and my MG could even be much worst than what it already is (preds. disguising the sx). May have progressed since the surgery.

Also, because the side effects have been so bad, plus what could possibly happen later down the road (permanent hyperglycemia, osteoporosis, etc.), I might as well start Imuran, which could make me much better in a year's time- much better tahn I am now, and get me off the prednisone safely.

He says that even though there's an increased risk of cancer, it's still not much to be alarmed about, and when the MG's bad, might as well weigh the pros and cons (my life's been put on hold by this 'cause of my communication abilities, or lack of). He also said that anyone with an AI already has an increased risk of cancer for some reason (which I've read too). Plenty of people with AIs take immunosuppresants, and they still don't have such a high rate of cancer that the drug must be pullled. He said Organ-recipients are at the highest risk of getting a cancer from these drugs (maybe 'cause they have to take a higher dose, and be on them permanently?).

One thing I'm very hopeful about is that usually, MG doesn't go away when a thymoma is involved, but because my thymus was also very hyperplastic, this is a very good sign that I may get a remission at some point-probably after a few years *crosses fingers*. Tyson, if you read this, can you ask your doc. if your thymus was hyperplastic as well? The doc. said that usually people around my age, and younger have this thymoma-with-hyperplastic-thymus situation. This will be that much more assurance that in time, you may get completely better, Tyson!

Overall, I liked how my visit went. The neurologist was extremely nice, personable, answered all my questions, and provided a lot of information/empathy. His assistant neurologist was very nice too, and helpful. The guy who did my EMG studies was also very personable, and talked a lot about different Myasthenic-like illnesses, and such. Everyone was nice! lol

He also recommended that i start imuran at the lowest dose possible, so as to ease side-effects, and stop when they get too bad. I was originally supposed to start right at 150mgs, but he told me to start at 25mgs, then increase every two weeks. It will take longer to see a difference, but the transition will be more comfortable.

I feel more secure in my decision now after seeing two awesome neurologists. The MG's very bad. It's hard to really know if one is really *bad* or not without being able to see others in the same boat. So I know it's fairly serious, and i need something. I can't keep living my life in the shadows because of this- wanna get back to life really badly, be able to sing again, be an annoying chatter box, laugh without feeling like lungs are collapsing. I wanna feel a bit more like my old self, and maybe by the time that starts happening, maybe the MG might have run its course, and will take a hike, or fly a kite, or play in traffic- will go away!

Oh yeah, I was very concerned about infections. He said that I may get a bit more sick than others, but that's about the extent of it. I wont get PML, and other things I was sorta worried about. Somtimes, I think that I look into things a bit too much (on the net...lol), and miss the bigger picture (and freak right out! lol).


Oh yeah...He also looked at my tongue, and he said that it is triple-furrowed, and looks atrophied! (he said this to his associate):S....I've seen pictures of atrophied tongues, with the triple durrow thing, and I also thought my tongue looked like that when I can't move it well- but, whenever I have PLEX, it returns to normal appearance...It's not all fat, pale, and segmented-looking...he mentioned that I seem like a Musk-person, but I told him my blood test was negative for the musk. I guess I'm just weird one! Just throwing this out there in case anyone else has a tongue like this and doesn't want to feel alone! lol

I hope all you guys are doing well, and here's to feeling much better!

Nicky

[jana]

Nicky, I, for one, had MUCH rather take Imuran than Cellcept. I have NOT heard as much about the cancer risks with Imuran. You do have to keep an eye on your liver -- but, if tests don't show any problems for the first couple of months, I "think" that you are pretty much in the clear.

I'm rooting for you -- I'm heard of soooooo many having POSITIVE results with Imuran!!! I'm so glad that they are starting off slowly -- sounds like you are in good hands!!

[Pat 110]

Hey Nicky,

I am so glad your visit went so well and you are starting the Imurin at a low dose. I sure hope your see some improvement soon. I know it can take a while, but maybe you'll be one of the lucky ones! I wish you all the best and hope you start feeling better & stronger soon.

Hugs,
Pat

[DesertFlower]

I hope you will feel better with this treatment and I am so glad the doctor took the time to explain things so well.

[Nicknerd]

Thanks, guys! I hope that it works asap too (the Imuran)!

He mentioned something else that caught me off guard. He asked me how much mestinon I take. I said that I take 60mgs every 3-hours. He said that I should try doubling it (120 mgs). I said that I had thought about this in the past, but was worried about over-dosing. He said that he doesn't really believe that people can overdose on mestinon. He said that he's reviewed all the cases of 'cholinergic crisis' and he believes that under-medicating precipitated the crisis, and the crisis was actually a myasthenic one, not one brought on by the medication. That was something new!

[suev]

So glad yor new doc(s) are taking the time to really really address your condition and your questions.

That's awesome!

Sue

[Nicknerd]

Jana...I've heard from some people that Imuran is very good for achr bulbar myasthenics...Have you heard this too? I'm very hopeful!

This might sound really silly, and I'm a pretty skeptical person, but I have a friend who believes in sorta mystical things. She told me to ask a question, and she has this book of old Persian poetry that will give you an answer to your question...I hadn't told her about my appointment...

Anyway, I asked if I will ever get better...She told me that I will take a small trip a bit far away, and once I leave, I will get the answers I need which will direct me to getting better...She also said that I've been getting angry at loved ones, and I'm pushing people away from me...All true!

I know that sounds silly, but I guess when you're desperate, you start turning to the occult for answers? LOL..haha...Planing on purchasing a ouiji board- just kidding!!!

Thanks guys, for your replies...How's the weather where you are? It's 12 degrees today...Perfect day for getting outside- not too hot, with a nice breeze...

Nicky

[AnnieB3]

Nicky, I'm glad you are getting some good help. I still think that a furrowed tongue may be undiagnosed celiac disease and the associated nutritional deficiencies.

Annie

[jana]

Nicky, I haven't heard anything like that (about AChR and Bulbar) -- but, both of my neuros have had good results for a LONG time with Imuran. If it weren't for my cousin's liver failure (of unknown origin) and now my sister's raised liver enzymes (and no one can figure out why) -- I'd be taking Imuran in a heartbeat!! The liver, from what I understand, is what you have to keep an eye on. But, I think that problems are RARE.

[DesertFlower]

Originally Posted by Nicknerd

Thanks, guys! I hope that it works asap too (the Imuran)!

He mentioned something else that caught me off guard. He asked me how much mestinon I take. I said that I take 60mgs every 3-hours. He said that I should try doubling it (120 mgs). I said that I had thought about this in the past, but was worried about over-dosing. He said that he doesn't really believe that people can overdose on mestinon. He said that he's reviewed all the cases of 'cholinergic crisis' and he believes that under-medicating precipitated the crisis, and the crisis was actually a myasthenic one, not one brought on by the medication. That was something new!

Nicky,

Interesting that he thinks people can't overdose on Mestinon. Thank you for sharing this. I am still surprised at how there are different opinions about treating MG, I get frustrated with this.

I have to disagree with him.

I had one very scary experience from too much Mestinon (and lots of minor overdose experiences until I lowered my Mestinon dose). The muscles in my entire body were tight, some more than others, and they stayed that way for a few days and I started to get muscle cramps and couldn't move due to tight muscles. When it first started I walked like frankenstein, but as it got worse I couldn't walk at all. And my eyes wouldn't even look at anything, just kind of moved around on their own- way beyond what I would call double vision. I was so scared I really didn't want to take Mestinon again and would have preferred laying in bed unable to move (that is me without Mestinon) over the stiff painful body experience. I thought I was dying. It took a few days on a lower dose for these overdose symptoms to go away. I do not want to risk this again.

It is warmer here, but still the air is cool. Wildflowers everywhere! Everything is growing and I like to see all the flowers.

I liked hearing about your mystical experience. I am very skeptical myself, but sometimes I allow myself to believe these kinds of things, even if it is just for a short time.

I wish you the best.