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294666 tn?1253495323

myasthenia gravis question

I posted this in a diiferent forum & didn't get any replies.  I figured I'd try one more time.  I had an episode of ptosis in both eyelids, but mainly the left for 2-3 mos years ago when I was 19.  I had gone to a specialist that ran some tests, put me on steroids, & said I should be better within a week.  Never was told what it was, but the drooping never occured as severe for me to worry.  Since then, I had gone to several different dr's regarding chronically stiff & weak joints/muscles.  Arthritis was ruled out.  I notice I tend to aspirate my own spit at least once a week, randomly.  I also was dx w/ Von Willebrand's Disease & severe anemia (the anemia subsided after monthes of infusions).  I found out 5 yrs after the ptosis that I had got dx w/ ocular myastenia gravis.  I spoke w/ my PCP if they would run some bloodwork to see if I had full myasthenia to explain all the other sypmtoms.  He did & it came out normal, but it wasn't during a time my symptoms were aggravated.  I have researched that a neg. myasthenia panel doesn't neccessarily rule out not having it.  I have asked my PCP if I should see a neurologist & I was told no need to.  I still get Lt eye ptosis, esp late at night.  Just checking to see if anyone has any thoughts.  Thanks for any input.
3 Responses
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1176211 tn?1264038680
Whoops, almost forgot,  Don't disregard the aspiration either and pay attention to other symptoms like dry mouth,  Sjogrens sometimes presents and in my case, I have ulcers in my larynx instead of acid reflux.  You may want to ask your doctor iwhat he thinks about using OTC prilosec.  Sjogrens and MS are so hard to diagnos.
Helpful - 0
1176211 tn?1264038680
You are so young, I am sorry because it must be vey frustrating.  I have had some of the same symptoms that you described, do you ever get any rashes, like flat non itchy red spots that kinda travel from your arm to your legs, etc..  mine did and they noted mine as systemic, meaning it travels throughout your body versus staying in just one, I would like to make a suggestion, get a blank journal book or legal stenopad and start writing down any and all weird symptoms you may have as well as the setting, like were you in the sun, was it summer or winter, did you eat anything weird, etc...  This will really help you and your doctor if your symptoms continue.  Have you seen a plastic surgeon neurologist? They might be able to shed some light on it

If you have not, you may want to speak to your physician about running some tests, you can note the results in your journal and if needed it will give the doctor a great baseline of stats for any future issues

Good luck and hang in there!

Carly
Helpful - 0
642304 tn?1242606724
MEDICAL PROFESSIONAL
If you merely had ptosis with no other symptoms, then this would likely be due to aging or some connective tissue problem.  There are some herbal remedies for simple ptosis (see ptosis.com), but if other symptoms are also present, then this may be more complex.  I am unsure how the Von Willebrand's Syndrome fits with this diagnosis, and it may be something entirely different.  If you have joint pain, loss of mobility and other symptoms, then it may be more complex, and you also need to examine the possibility that one or more chronic viral or bacterial infections could also play a role.
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