[madnurse]

Hi everyone. Thanks so much for the support. I enjoy reading everyones posts and lerning from all of you first hand while I am still looking for the cause of my symptoms.

The last time I had posted, I expressed my frustration with all the doctors I have seen and still no idea of what is going on. I started having double vision in January...worse with fatigue, and slight bilateral ptosis. Antibody negative, normal EMG. MRIs are clean, chest CT had some abnormalities in the area of the thymus, but non conclusive. I am meeting with a pulomonary doctor tomorrow (A small nodular area was found in my lung, but my PCP thinks it is nothing..referral to pulomonologist was necessary becuase of the size).

So, I have had some new weird symptoms. About a month ago, I started having some post-void dribbling (best professional way to say it, haha). After I pee, when i stand up, i leak (enough to wet my clothes...and very embarassing!!) And about 2 months ago, i started experience some tingling/numbness/itching on the right side of my face. Every once in a while, I get a similar feeling on the left side, but much less so. And when it hapens on the right side, my face feels heavy. It freaked me out enough that I had to go look in the mirror. I expected a droop, but everything looked normal.

I'sd appreciate it if anyone could let me know if they had experienced similar symptoms. I have an upcoming appt with a neuro-opthamologist and for a SFEMG. Thanks for any input!

[AnnieB3]

Hi. I'm sorry you don't have answers yet.

I know that MG can come on like a freight truck or a whisper. In some people it initially knocks them into a crisis while with others they can go for even years without major symptoms. So maybe you have MG and are slowly progressing.

If it's some kind of nerve involvement, that can't really be "seen." Even with MS, the damage on MRI (brain) is sometimes not seen right away either. I guess I would be suspicious of MS too due to the numbness sensations. Could be a virus too.

Has anyone tested you for APS (antiphospholipid syndrome) or any other clotting disorders?

Any problem with muscles or nerves can affect urinating. So can things like high blood pressure. Is yours normal?

Has anyone done any endocrine testing? Like thyroid, a chemistry including parathyroid testing?

Try taking a photo of your face when you feel "normal." Take it in the same exact place with you look straight ahead. Then take it again when you don't feel normal or at the end of a day. You would be surprised at what our eyes can miss but the camera does not.

I'm glad you are seeing a variety of specialists. It really does help. The neuro-ophthalmologist will really be able to determine if you have fatigable muscle weakness. I was amazed at how they test for that.

For the SFEMG, keep hydrated and warm. Try not to drink caffeine beverages for a day beforehand. There isn't "proof" positive but stay away from nightshade foods too because they act on the body like Mestinon (one of the drugs for MG) does. Nightshade foods are: Potato, tomato, eggplant, peppers and tobacco.

I hope you do find answers soon. In case you have MG, be careful out in the hot weather.

Annie

[madnurse]

Hi Annie, Thanks for the reply. I do have Hashimotos thyroiditis. My B/P is normal 110/70. I am 35 years old, and all this stuff just started happening this year. I have been tested for Lyme disease, and a bunch of AI disorders...nothing positive. I haven't heard of APS, and I don't think they dotors looked into it as far as i know. I'll have to look it up and see if it matches the symptoms I've been having. The double vision is really starting to effect daily living...especially driving. I am also a full-time student, so studying is pretty hard when you can't read!!!

Thanks for the tips in the SFEMG....I'd hate to wait months to see these specialists and then have some foods I ate lessen what I normally expereince!!

[Juanitad]

One of the first symptoms I had (aside from the eyelid droop) was problems with incontinence. Since I have never had any children of my own, I couldn't understand it. Of course, once I was diagnosed with mg and started researching what mg was, it all started making sense. I know it kinda stinks to think about, but I had to start wearing a pad at all times and still do 10 years later. No urologist can help me and I have decided there are worse things in life than this.

Good luck!

[madnurse]

Thanks Juanitad. I guess the incontinence makes sense based on the way MG affects the muscles, I just have never seen it listed as a symptom anywhere.....or saw anyone post about it. Although, it is not something that is easy to share either. Thanks for letting me know.

[kristy]

Originally Posted by madnurse

The double vision is really starting to effect daily living...especially driving. I am also a full-time student, so studying is pretty hard when you can't read!!!

Have you tried an eyepatch? When my double vision got really bad I started reading with one. My eyes still got tired, but it helped a lot.


Kristy

[Juanitad]

I have been having real problems with dv for the 10-12 months. I finally had to start wearing a patch in order to work (accountant on the computer most of the day), drive or read. I do switch the patches about noon so I'm not using the same eye all the time. When people ask questions (which they will!), I just tell them both eyes work, they just don't work together! I really don't mind prople asking questions (had a 3 year old boy at WalMart yesterday totally fascinated with the idea he could cover one eye and still see - he thought I was blind because I had one eye covered!)

Anyway, I finally made my peace with the dv by reminding myself that if I had lost an eye due to disease or an accident, I would still want to work, drive, read, etc. so I treat this the same.

Good luck!