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Old 04-06-2009, 06:48 PM #1
ras1256 ras1256 is offline
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Join Date: Feb 2009
Location: outside Denver, Colorado
Posts: 366
15 yr Member
ras1256 ras1256 is offline
Member
 
Join Date: Feb 2009
Location: outside Denver, Colorado
Posts: 366
15 yr Member
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Originally Posted by korbi_doc View Post
Hi Ally, boy, you do sound just like me with those symptoms...exertional dypsnea is no fun & becomes very difficult to deal with, as if the exhaustion is not bad enough....now that I look back to my life when in the veterinary hospital, I realize that there has always been somewhat of a problem with extreme fatigue....rode horses & showed them for many yrs, & the last few yrs, many of my friends wondered why I couldn't keep up, esp with my english horse in long tough classes...I blamed it on our marathon days in the office doing surgeries both before & after the horse shows, thought I was just getting older & too tired....lol....hindsight is 20:20....

About the neuro doc, he told me he didn't know, since it wasn't his area of expertise (oncology, neuro), even tho the EMG was decremental, so he recommended one of his colleagues, who is experienced with it...would've sent me to anyone of my choice, how's that for a good guy?? I don't read that about many on these forums....hope you get your dx soon, but does seem conclusive already...

ras, you can be assured I'll be careful with meds, it's in my modus operandi ....the 60 mg tabs did nothing for me from the 1st doc, & his colleague stated it was a very lo dose....I've not read that it's a nighttime drug, but I need help to manage my days, so take one very early am & do feel the difference...the 2nd dose I take in late pm...seems to work for me, I knew I needed that 2nd dose when late afternoon set upon me.....

&, you are so right 'bout managing your activities, & I've realized, as have you, we can't come all the way back....just driving over an hour to the neurosciences dept & back, leaves me quite exhausted for sev'l days, but I am the type to push that envelope as far as I can...in yrs past, running the vet hospital, office hrs, surgery, dealing with clients & keeping up with new information, etc, took up all my days & sev'l nights a week...my goal right now is to get back on one of my horses this summer & ride..think I'll send him/her to a trainer 1st for a few wks to get him ready...I also have a large fishroom with 6 big tanks to care for & I'm sad to say I've fallen down on that one, just can't do it the way it needs doing....& then there's the dogs....oh well...C'est la vie.....

Thanks both for your comments, & hope you are able to "keep in control"...I'm also interested in other meds for this disease, imuran, tho nasty drug may be useful, what happened to Monarsen? nothing since '06...prednisone is evidently good for some, but put me in the toilet immediately...no one can answer why....

Dottie
Dottie -
I kinda figured you for an overachiever type. It seems to be we who end up with MG, believe it or not. It wasn't the meds so much that I was cautioning about - it's how much you do. Being an overachiever, we tend to cut down even 50% of what we did, and in the beginning that's still too much.

I'm impressed with your doc. There aren't many, as you noted, that will admit they're not the best to handle you. The one who gave me my 2nd dx explained that to me as she passed me off to someone more qualified. Now those are awesome docs! We obviously need more of them in the world!

Prednisone, I hear, can make you worse before it makes you better, which happened with me the first time, too as I recall. I was on Imuran for a while after my thymectomy and I guess it worked - just not dramatic and sudden so it was hard to tell if it was my thymectomy or the Imuran or both. It takes quite a while to build up to theraputic levels.

Erin has great luck with IVIG, and there is plasmapherisis but it's very expensive and somewhat invasive so they usually reserve that for stabilizing rather than ongoing treatment.

Best of luck to you. Let us know how you like the new neuro.

Off subject, but may I request some suggestions for training my 6 mo. old choc lab. I was just getting into training sessions with her when I had an aneurysm coiled and that has apparently caused me to relapse. She was very easy to leash train, sit, lay down - most things, but she has this nipping and wanting to play tug-o-war with EVERYTHING and sometimes ends up getting my skin when going for a sleeve. Can't have that - my granddaughter is too small ( 9 yrs old) to be able to overpower this pup, so we are training the granddaughter as well!

Talk to you soon.
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