Just checking in
 

Hi Erin
 

I am new to chat, but been dealing with MG for awhile. Just wondering if you have been told about thymectomy. I had one and steadily improved until I was off all meds for the last year and doing almost as much as before my diagnosis. I am currently flared apparently having something to do with a procedure I just went through for an aneurysm. I've read several of the posts here and was just wondering about you.

Hope to hear from you soon. I need to compare notes with as many MG's as possible.

Becky

Hi Becky welcome to the forum!!!

Hi Erin,

I spent a night out at my sisters babysitting her dogs, and had a great time, photographing red eared fire tail finches, which I will put up in my forums when I get some extra energy. I also gave my gorgeous horse a nice big brush. It was nice to get away from it all.
Its still hot here, I'm really looking forward to winter.

Hi Becky!
 

Hey Kate!
 

Hi Erin,

winter here in Oz starts in June, cant wait, in fact even Autumn will be good, although the nights here are nice and cool at the moment, so all the windows are open all night.

I'm a bit icky at the moment, so my energys low. But I still managed to plant some peppermint and basil seeds a bit earlier.

I know nothing about PICC lines, I'm sorry, so can't really say! If it makes hospital visits easier by not having to have a line put in every time you go in it may be worth it. If all else fails write two lists, pro's and con's of leaving it in, sorry I can't be of more help!

Hi Erin.
I have been on a real roller coaster with Myasthenia - first prelimary dx in 1996 then that was removed (had an idiot Neuro at the time.) and later dx'd as spinal cord compression form a 1991 car accident and 1993 discectomy. Looking back I think it was both, cuz I did get better after another discectomy, but never to my old self again. Then in 2003 had a problem that they thought was spinal cord again, but it resolved by end of year.
MG reared it's head in April of 2004 and my neuro surgeon slammed me in the hospital when my husband had to carry me in to her office. She called in a hot-shot Neuro diagnostician because when she mentioned MG ( I was weaker that in 2003, but less spinal cord signal than then) who dx'd me and said it was "absolutely, for sure, for sure" this time. Had IVIG which didn't seem to do much then, put on Pred. then Imuran (in addition to the Mestinon) to get my strength up, then the thymectomy, rest, more drugs, blah blah blah - you know the drill - but SLOWLY over the next fews years had gained back most of my old self as long as I didn't push too hard for too long. I was off all meds from 5/08 until something triggered me after this "coil" for the aneurysm, which they can't figure out why it would pull me out of remission - I had a neuro anethesiologist and
neuro vascular surgeon that were in close contact with my neuro and didn't use any of the drugs on the no-no list, but still.....I'm struggling again. I haven't gotten to crises stage yet, but have been pretty well stuck on my recliner until my Neuro tried a 5 day round of steriod as kind of a test. As they decline, my strength and stamina are going to.
I think he's pretty good - my fav neuro stopped taking my ins. so I had to find another. I'm encouraged that even though he (like others have) questions my diagnosis, he did give me something more that Mestinon to help me feel better and confirm my dx to him.
I'm just tired of all the yes-no-yes-no I get because I don't present "right".
Personal info. - I live in Denver CO, just turned 52 in December, have been married 32 years to the most awesome, supportive man in the world and have 2 children - girl of 31 and a son of 30, granddaughter that is almost 10, in-laws and mother that are all very emotionally supportive. I just wish they didn't all worry so much - I'm too stubborn to die from this.
The aneurysm was found incidentally when they were checking for another reason for my occasional head swimming and imbalance, so it really didn't scare me much. I believe in fate, and it seemed good that they found this before it caused problems which, given the artery it was on in my brain, the location in a bend of the artery and the shape of the aneurysm it probably would have burst at some point which would have been death or worse. I (nor they for that matter) just never anticipated the relatively non-invasive procedure could do this to me given the precautions they took.

Anyway - about your PICC - I doubt it would be good to leave it in. Did they offer that option to you? For how long? I have awful veins for IV's etc. so I'd never be able to do that, but I would definately discuss that with your docs. Especially given the problems with infections you're having. RE: your thrush - I've been fortunate not to have any problems with it - but so sorry you're having to deal with it. I sure hope your thymectomy gives you the same result I had. It was awsome to be able to get my life back again after such a long haul - and I look forward to getting myself back to that point AGAIN only much faster this time I hope. Keep up the faith and positive thoughts - they make all the difference in the world. I know what you mean about MG scaring you though - when I am in my weak state is the only time I ever feel "mortal"!

Incidentally - there is a website with a free book written by a Myasthenic who was diagnosed 50 years ago and has analyzed so much about the disease from a true layman's standpoint that I just found and think every myasthenic should check out.
It really struck some familiar chords with me!
Take care of you.
Becky

Hi Erin, (and everyone)

Things are good here in Scotland! We've had a really beautiful few days. Derek and I were able to go away to the west coast for a couple of days last week and enjoyed some nights of solitude on the Mull of Kintyre (a la Wings song). It was stunning - we could even see ireland over the water. I thought about jumping in to see if I could swim over, but refrained! Maybe a few more weeks of swimming pratcise first - hee hee.

On to my MG - I'm frustrated right now because I'm really feeling the variablity of it all. While we were away I managed a HUGE hike - down-hill to the lighthouse on the mull, then back uphill to the car! At certain points the hill was almost 45 degrees and it was a very hard walk - even my husband who is quite fit struggled. I had a few hairy moments and needed to stop and rest, but I did it! Then, the other night I was leisurely walking home from school ( a short, easy 10 min walk) and I couldn't feel my legs by the time I got to my door. Because I was so stubburn I kept walking and almost fell when I stepped up into my doorway. I was so cross with myself and my condition. I hate that I'm still having such great days followed by such rubbish ones! Sorry - enough whining. I have my bone density scan in a month (only a year and a half after starting my pred - not much of a base-line) so I'm looking forward to finding out if my insides are healthy!

Hope everyone is good! I'm looking forward to an exciting week - we are opening our brand new high school on Tuesday - state of the art facilities. Should be great!

Take care, I'll be in touch!
~Kathy

Hey Redtail!
 

Hi again Kathy -
I really have to figure this chat room stuff out - I feel like I'm bouncing all over to talk to the same people! But... I saw your comments on your walk, being able to do it, then a few days later it getting you. I have experienced this delayed effect alot and have learned that when your read or hear that you can live a "normal life", it doesn't necessarily mean like you used to. I think it just means not having to live in a hospital or be in a wheel chair. Even in remission I have had to watch how much I walk at one time and have pretty much given up the mountain hiking in my beautiful Colorado mountains my husband and I used to do alot. It sucks - but it beats landing on the recliner for days!
Be careful and take care.