suev- wow, It seems like I read about a lot of people that take a while to get a diagnosis.. the limbo time/unkown is not fun! The dr i'm seeing at UTSW tomorrow is at the ALS clinic, looks like she also specializes in other things like MG, and polyneuropathies.. So, I'm hoping that we can find an answer- ANY answer besides a motor neuron dz! I think/ I know i'll be a nervous wreck tomorrow before and during the appointment!
I have seen 3 neuros, a physiatrist, my GP and my GI/Internal med dr, and still am a medical mystery! Neurology is so subjective, so I can see why it takes multiple opionions and tests to find answers, and it makes it hard as a patient to have so many subjective exams too, I think!
I'll keep yall updated, and again thank you so very much for your replies, I REALLY appreciate your time!

brandonc- wow, Good thing for that magazine!! I've never even thought about getting second/third opinions on anything my whole life until this, but that's a prime example of why- it just takes one person to have a lightbulb go off and get a diagnosis!

Have you ever been tested for VGKC antibodies (antibodies to voltage-gated potassium channels)? Those are associated with Isaac's syndrome, a disorder involving fasciculations. Patients with VGKC antibodies may have associated myasthenia gravis with or without AChR antibodies. This is not the same thing as VGCC antibodies (voltage-gated calcium channel antibodies) which are associated with LEMS.

http://www.pnseuronet.org/vgkc.php

This link describes the association of VGKC antibodies, Isaac's, and MG. It makes it look like they have to test your brain tissue, but don't worry, Athena diagnostics has a blood test for VGKC ab.

Tatia

I have focal weakness! My right eye, which was one of the issues that lead me to pursue what was wrong with me, blurs constantly and will only focus alone. I have also had the issue of my eyes shifting back and forth rapidly, like they are vibrating, making texting on my phone an issue. I can literally feel them bouncing back & forth and trying to focus, like a camera lens that can't find it's target. While I have very poor vision anyways and am severely myopic, this is very different and new. I also find I have more problems going near to far & back.

For my dx I had AChR binding first, but it was negative. Two months later a new dr ran that same test and it was positive. They also ran the modulating, blocking, MuSK, LEMS, and a calcium-channel voltage blocker (or something close to that). They did the nerve stimulation test, but it showed nothing. CT scan too, but I haven't heard those results yet. My doctor said, point blank, that he was dxing me based on "your physical exam, your AChR, and your story."

Thank yall so much for your replies, i really appreciate it!

Geod- Funny you mention Isaacs, I have it on my list for tomorrow (my university neurmuscular specialist appointment) to ask about getting tested for.. From what I understand it can affect your tongue as well. Thanks so much for the info, that is really interesting that there is a relationship between that and MG too!

Kage12- Thanks! That's interesting that they repeated the test and it was positive the second time around.. I guess the Musk labs aren't in the typical MG panel- my labs were run by Quest, not sure how much confidence I have in them, I have had a few bad experiences. When you say they diagnosed you from your physical and story too, how dramatic is the weakness with effort and then how dramatic is the improvement with rest.. do you feel totally normal after resting for a few minutes, or do you always feel kind of weak and then its just worsened by activity and never goes away completely?
Thanks again so much for yalls time! I'll update yall after my appointment tomorrow, i'm SOOOO nervous!

Been thinking of you...How did everything go?

For me, I tend to always feel weak but I get weaker the more I do. I was rested when he tested me by pushing on my arms but I knew I wasn't as strong as I used to be. As he repeatedly pushed on my arms, they got lower, and lower, even as we rested for a minute in between. Same thing with my legs. I know I used to be so much stronger, even a year ago. I can never quite get back to that.

Hello everyone! So we went to our appointment wednesday and spent SIX hours there! Four with the dr's themselves, I was so incredibly nervous beforehand.. It is the university ALS clinic, but they were really really nice, and spent a lot of time with one dr and then they had another dr come in as well..
The good, amazing wonderful news- No ALS! They even did an emg right then and there (I have two clean emgs from other neuros), but since I have this weakness in my hands with mild atrophy, it seems like something should be on the emg, well thankfully this emg was clean too! Done by the ALS dr himself...
the not as good news was - they were completely baffled.. they had no idea what's going on, they thought I sound like I have Guillian barre/cidp, but my reflexes are intact and the clean emgs, and normal LP goes against all of that.. I was numb to temperature, pin prick and my vibration sense was off too.. so large and small fiber neuropathy.. No one seemed to have a clue about my tongue and speech getting slurred as the day goes on..
So, we left with the great news it wasn't ALS, thank God!!! However, it was kind of unnerving to see these specialist so baffled.. I am a little upset that they didn't run the Musk test.. they sent a bunch of labs to mayo, but said that I didn't seem to have MG..
Kage- that is exactly how my neuro exams are-when they do repeatitive strength test on me I can't even resist them in the end - and I end up almost unable to use the muscles they tested for the rest of the day and am VERY sore the next day (i'm 31 I should be able to do simple strength tests!!!)
with my tongue, I think what's the harm in running the Musk tests, especially with them not having a clue.. I'm going to be an atypical case of something, though they just dont' know what it is..

I am going to get a skin/nerve biopsy here soon, and they are probably goign to set up an IVIG trial here in the coming weeks. I just pray I get better with it!!
So scarey having the specialist be stumped.. A trip to mayo may be in order.. Have any of you been treated in Houston? I have heard there are great neuromuscular guys in Methodist and Baylor.. Hope everyone is well!

So glad they were able to eliminate ALS....what a relief for you!

I haven't been treated at either of those institutions - but have a wonderful neuro outside of Houston. PM me if you want more info.

Thanks Suev! I have a great guy here that I really like, My other dr's had wanted me to see him since getting in with the university here was going to take a while, but they ended up moving thigns ahead so it didn't. We may end up having a trip to MAYO in our future.. I just hoped we could get an answer here, or in Houston since we'll be down there in a few weeks.

On another note- Does yall's face get fatigued after smiling?? If I laugh or smile, it's like my face tuckers out and I just can't do it anymore for a while.. ALL of my muscles are this way, but my face especially! I am also now noticing my slurred speech is defintely normal in the morning but progresses as the day goes on or if i talk a lot, and then if i rest it gets worse.. hummm.. So i researched the whole MusK aspect some more- it looks like patients can actually have muscle atrophy with it, along with the furrowed tongue and tongue atrophy.. huh!? I have vibration, temperature and proprioception loss in all limbs, but I am starting to wonder if that is separate - maybe just from post partum, malnutrition issues.. For those of you who had positive bloodwork, especially Musk, do yall know where they sent your bloodwork? To mayo, or can a lab like quest do it?
I think I am going to call my neuro here and have them go ahead and just run the Musk.. what can it hurt!