The Quest Begins
 

Next Monday I go to Doc to start process of tracking down a speech problem. It seems to fit the MG scenario. After talking continuously for a few minutes my speech slurs badly. My tongue just cant seem to position itself to make the sounds properly. Seems to be mostly the tip of the tongue wont close off to the roof of the mouth for S, T, or D, S becomes "esh", T becomes "Che", D sounds like "deg".

If I stop talking, for just 20-30 seconds, I'm pretty much back to normal for another 20- 30 seconds and then back to the slurring..

Don't have any other overtly noticeable symptoms at this time.

Monday will start the Quest.

Hi Byteryder,

Good luck figuring out what is going on! It is so frustrating when you are unsure what is going on with your body. I just wanted to agree that your symptoms do sound llike what I have experienced with MG. As a primary school teacher I talk a lot (too much sometimes) and I get a lot of muscle fatigue in and around my mouth. Have you noticed a more nasal pitch to your voice as well? Or trouble sealing your lips around a straw? Anyways, all the best on Monday!

~Kathy

Thanks , kat.
This is about 2 months in the making so far. I had it tagged for MG the day it first happened. Ive been watching and testing myself for the past two months, noting the conditions under which this occurs, variability in severity, and any other related symptoms. There might be a bit of it in the legs as well, but not enough to be definite about. Figured I've goatherd enough information to go to the Doc with. Want to make sure, at the least, that there isn't anything going on with the thymus. As of now, it's mostly an aggravation factor affecting only the voice. No nasal sound or issue with lips.

1st Appointment
 

Monday Doc is done. Head MRI scheduled to check for neurological issues, and Doppler Sonogram for leg arteries to check for PAD for leg tiredness/weakness.

Other than that, everything pretty much the same for the past 2 months, occasional dysarthria with continuous voice use, relieved by resting voice.

Will keep posted..

I've been reading thru some of the postings and have come to realize my problems, should they prove to be MG, are vanishing tiny compared to what some of you are going thru. What I am wondering about is how your MG progressed, if it did, from the time you first noticed symptoms.

For me, reaching back in my memory, the very first probable symptoms with the tongue not working right was maybe 6-8 months ago. Then, I would experience a very short period of speech difficulty after like eating an ice cream cone. I called it "tongue freeze". I think that was the result of using the tongue eating the ice cream, and was a precursor to what is now slurred speech after talking too long.

So, any insight as to how your case progressed from the time you first noticed some issue ?

If I look back at photographs my first signs of a drooping eye (ptosis) were around 16. The majority of my symptoms didn't present themselves until much later. I worked in a stockroom at a GAP in my 20s and would notice repetitive activities difficult after extended periods of time, but it never really impacted my job performance. I fell three times climbing stairs in 2004 (I was 25 at the time) which really started the diagnosis ball rolling. My symptoms were mostly under control with Mestinon until last year. Things really deteriorated about a year ago and now I am on Azathioprine, Prednisolone, and I've had one IVIG treatment.

I know I'm not as bad off as some - I'm still able to work and function independently for the most part (although around Christmas I really could barely walk any distance without my husband's arm). Couldn't get in and out of the tub on my own either. I'm now 29 - and 4 years into my diagnosis.

Things seem to be improving a lot now (touch wood). I'm waiting now for the swelling from the steriods to go down. I hope this helps you - I'm still learning about all of this stuff. All the best!
~Kathy

Thanks, Kat.

I'm closing in on 67 here (November) and still working full time. Like to get in maybe another year. I've had a fortunate life, health wise, for 40+ years of smoking and a die hard couch potato :) Quite smoking 3 years ago, but I still have never seen a chair I didn't like :) First real health challenge was a ruptured disk that took out my left thigh muscle totally for about 3 weeks. It's resolved itself and leg is 99% now. Then, I had a nasty cold and woke up one morning with my hearing half gone. Its still gone. Then I got into panic/anxiety attacks, so now I'm on Effexor. Now....this little issue. I guess I kind of fell apart when I hit 62 or so.. hahahah

Even with all those things ,I feel so very lucky after reading some of the stories in here.

Thanks for the reply, kat, and good luck to ypu.

I had been really healthy as well! My Mom is always commenting on how bizzare it is that someone who didn't stop dancing and singing all through school could now be so debilitated (although again I'm very lucky as well compared to some with MG or other conditions). I always feel just a little bit gulity about feeling sorry for myself because things really could be so much worse, but when you are 29 and asking your husband for help dressing life just doesn't seem fair! He's great though and keeps me laughing. Besides - I can put up with looking like an Oompa Loompa if I can walk!!:winky:

Out of curiousity, are you a man? I once read that the onset for MG is between 60 and 70 for men and 20 and 30 for women. I always thought that was a strange difference. I wonder what causes it?!? Anyhoo, all the best! I'll send a smile your way! :D

~Kathy

Yes, kat, male here.

Ya, according to what I've read, they younger years the gals are more at risk, after 50 or so its get to be like 50/50. Also read that late onset has a better chance of being thymus related (thymoma). That,s why I decide to pursue it even tho it isn't that problematic.

I think it is a very good idea to persue a diagnosis, even if your symptoms aren't too bad at the minute. That way if things do progress you've got some evidence. When I was first diagnosed the neurologist said I had a very mild case of generalised MG and it would probably be manageable with mestinon for the rest of my life, but that all changed! Even my original electromyography test showed only slight issues so the doctors weren't too concerned. I think if my blood tests had come back negative they might have thrown me out as a crazy!! Thankfully (I guess) my bloods showed the Musk antibodies so the diagnosis went through. When I was diagnosed they checked my Thymus and everything was fine, but I'm trying to convince my neurologist to double check it now that my symptoms have worsened so much.

All the best!! And keep in touch - it's nice to chat about things. It clears my head! :p
~Kathy