Hi and Welcome!

I don't get dv or headaches, but my original complaint was my 'weak with use' right arm. I'm a golfer and used to be pretty good....until my right arm wouldn't help me control the club half way through my round!!

Even today (after a few years of Mestinon) the right arm is almost always the first thing to get weak. Kind of my 'tell' on what's coming if I don't slow down for a bit.

Headaches -- yes, ARRRGGGHHH!!! I've always suffered from migraines -- but, they were under control until this past July. My vision started going "wonky" about that time (blurry) -- I ended up with severe double vision during September and October -- it started again during December and still hasn't gone away.

I complained mightily about my increasing headaches (up from 2 or 3 a month to 20 days per month) -- but, until I saw an optometrist a couple of weeks ago, no one seemed to "catch" the double vision/headache connection. My migraine neuro had recently upped my Topamax and renewed my Maxalt -- and it did help -- but, a slight daily residual headache remained. This past week I saw a neuro-ophthalmologist and got stick-on prisms!! I can SEE again!! My head already feels better. So, YES, I NOW firmly believe in the "eye-headache" connection that I ALWAYS heard about as a child!

Hmmmm -- just ONE arm/hand is weak?? I've had BOTH weak -- but, honestly, with MG you can expect the oddest symptoms. Like Annie, I'm having back issues right now -- MG can do AWFUL things to your back and neck muscles -- and if certain muscles got weak and didn't give proper support to certain vertebrae, I could imagine how a nerve (or something) might get pinched causing just one arm/hand to be weak.

BE careful -- I really hope that you CONTINUE to have "mild" MG. I was diagnosed with "mild" MG -- but, it only stayed "mild" for about 15 months.

BTW, I AGREE that rest is EXTREMELY important for MGers -- but, for me, avoiding STRESS is even MORE important. NOT easy to do -- but, essential for breathing, ya know?

Jana, I read all the posts here, and I'm sure I'm getting people's details mixed up with each other, but are you the one who has brain-fog, or some mental symptoms like that? I ask because you mentioned you're on Topamax, which has a reputation of doing awful things to your mind. I got a prescription for it once (for migraines) and didn't dare to take it, after reading about the mental side effects. People say that it makes them unable to think clearly, especially unable to think of words.

You probably know all this. I always figure it's better to risk being a little annoying by telling people things they already know, than to risk not telling them what they need to know!

Abby

Abby, you are SOOOOOO sweet -- and wow, WHAT a memory YOU have!!

Yes, I've got "brain fog" that sometimes drive me C-R-A-Z-Y!!! And, YES, my docs think that "some" of it may be attributed to the Topamax. But, I started having my demented "moments" about 6-9 months (??) BEFORE I started taking the Topamax -- ARRRGGHHHH -- so, I can't place all blame there. *sigh* A very astute resident that I saw at one of my appointments also noticed that I was taking Zyrtec (I was rotating off of Claritin) and he said that Zyrtec also had a reputation for doing the "brain fog" thing in some people. (I'm BACK on Claritin, now!)

I lowered my Topamax dosage about a year ago (just to see if my IQ shot back up -- LOL) -- and the ONLY thing that I (and my family) could tell is that my spelling and "grabbing" words improved. Other than that, I was about the same.

My brain fog seems to be worse on my BAD MG days -- and when my MG is "behaving", I still seem to be able to handle MOST of the difficult math problems that I taught as a high school teacher. :D I was ALWAYS the "encyclopedia" of the family -- the one who knew everything -- remembered where everything was -- and although I still seem to remember more than some of the others, I remember LESS than the OLD me -- so, deep in my heart, I somehow feel that MG is to "blame". I'm just not OLD enough for OLD AGE to be the cause of this, yet.

So, "in short" (hahahahahahaha -- as I've written a book), for ME at least, you are RIGHT!! Topamax seems to bring problems with WORDS -- spelling and finding synonyms. Since talking is my WORST symptom -- and I don't get out in public much anyway -- I don't consider this much of a big deal. The Topamax is a WONDER drug in getting rid of my migraines -- at least the ones NOT caused by double vision! ;)

:hug:

Thanks!

Sorry to hear about your golf game. Do you also have trouble with your right hand? Difficulty writing? Do you take anything other than Mestinon? Do you notice a difference between the name brand and the generic?

So many questions!!!

Thanks for all the advice - very helpful! I'm especially intrigued about the neuro-ophthalmologist and stick-on prisms. My vision is blurry too and the headaches come after too much computer work. I know what you mean about stress. For me the reaction is a tightening in my throat which stops me from speaking. Sorry to hear that you went from mild to not-so-mild. I'll definitely stay aware!

I just HATE when my voice "squeaks" to a halt. And, if stress can stop your voice -- beware -- it might eventually affect your breathing. Unfortunately, this might just come on SUDDENLY one day -- without ANY warning. You won't have a clue what is going on -- you just won't be able to "grab" air. Make sure you have emergency info in your purse -- so that someone in an ambulance/ER will know what you have and what to do. Better to BE prepared and NOT need it -- than to need it and NOT be prepared, right??

To see if your "blurry" vision is "early" double vision, cover one eye. If the blurriness goes away.......you have DV.

Something I LEARNED from the tech at my neuro-ophthalmologist's office -- put that "cloudy" looking Scotch transparent tape over one lens of a pair of reading glasses -- your NON-dominant eye. It doesn't look as "freaky" as a patch :D -- and sufficiently keeps that eye from focusing -- thus eliminating DV. If you do NOT need reading glasses, just get an el cheapo pair (like at Dollar Tree) and knock the lens out of the side you WANT to see through -- putting the tape on the OTHER side (if this makes any sense).

I did NOT know this thing about blurry vision and DV -- even though countless MGers had posted about it. I just thought that my presbyopia was getting worse RAPIDLY!! Eventually, I DID see TWO distinct objects -- and experienced the dizziness, nausea, tripping, almost falling, and soooooo much fun. :cool:

tperillo - you are right...my handwriting gets very bad in a fairly short period of time...to the point where I have to stop and take a break because the words aren't legible. I also notice deterioration when I need to stir stuff, or cut up a bunch of veges (needless to say I have to be very careful with knives since they can easily twist or fall out of my hand on the fifth or sixth carrot!!)

I only take Mestinon and its the generic. It works and luckily does not cause any side effects for me.

Jana - thanks for the warning about stress and voice. Odd that when I'm on phone for a bit my voice gets tired and cracky...but when I'm upset enough to want to 'spit my words out' absolutely nothing happens. It's like my throat gets stuck on pause!! Both of these are new for me so I appreciate the confirmation and the heads up!

Sue, ya know, I'm NEVER left alone. *sigh* But, if I WAS in a situation, say, where I might get mugged or something................I feel sure that I wouldn't be able to SCREAM (cause of my voice disappearing during stress). I've often thought that I should get an air horn or something to keep in my purse. A whistle would be good -- but, I tried and my lips won't fit around it enough to blow -- in the same way that I can no longer blow up a balloon. Of course, my lips were the FIRST part of me to stop working. :p

I would like to comment that those of us who think/thought we have mild MG, because we haven't had a crisis yet, may have no idea about how much the disease is interfering in our lives. It sounds like you are progressing in your illness and Mestinon may not be enough, and something more may be necessary to treat the actual disease process. I don't know what your problem is with taking larger doses, I had horrid stomache ache to start with, but now up to 60 every 4 hours. But one thing I found was that chewing and not swallowing not only got into the system quicker, but bypassed the stomach ache. So if I have to take 60 without food now I take the first 30 under the tongue and the other 30 with water. (After a number of months, I could finally take 60 with food which prolongs the maximum blood level and enabled me to spread out the Mestinon to every four hours.) nc