Sorry for the over posting this morning. Having one of those frustrating filled with self questioning days.

Here is my experience with vision. When I do the "hold your hand out at arm's length and put one finger up" test, I can concentrate and see it clearly. But if i "relax" my eyes. (hopefully you understand the difference between concentrating to focus and relaxing), i see two completely side by side fingers. Classic horizontal double vision. Without moving anything at all, i can make the double go away by concentrating those eye muscles, but it takes an effort. I do not see everything double all the time, it seems to come out more of just a blurred effect, like my glasses are not quite right.

If i cover one eye, it makes no difference at all, relaxed or concentrating... just one finger.

anyone else have double vision that comes and goes like this?

I think you have just perfectly described what I have been experiencing. There are a lot of times when the world looks 'blurry' (but no dbl vision yet). You squint and concentrate to focus on a sign or something - the rest you just adjust. At least I guess that was what I've been doing.

But the other day I was outside - it was a 'crystal clear' day. I was astounded by how sharp and brilliant everything looked - from the print on signs to the leaves on trees - everything was vibrant....and I was feeling particularly perky!

When I made some comment to hubby, he was unimpressed. Said everything looked the same as always. It was just a nice, sunny day.

Guess this is just another something to add to my ever-continuing list of :

'Clues to Determine if You Have Overdone (or are overdoing again)'

Nan,
I've never really experienced any double vision to speak of. My main problem is blurry vision. Sometimes even a few minutes at the computer, reading or crocheting tires my eyes out. I can't even wear my glasses when this happens, everything is to out of focus.

The eye fatigue may also be part of your current Mestinon dose problem, or it may be a symptom all it's own. Did you have diplopia or ptosis as part of your initial presenting symptoms?

I wish I had more answers for you, this is still so new to me as well, I'm still trying to figure things out as I go!

Rachel

rachel,

yes, I had blurry vision before i ever started the mestinon. I do not think the the mestinon makes that worse. and if i go back in my notes, it seems like I complained about double vision more early on before the higher mestinon dosage. the whole thing has me spinning in circles today, and I am usually an incredibly sane, rational, organized person. Having a flare of hormones pobably has not helped. I know I said cruise control and no second guessing until after the testing on the 17th, but my brain seems incapable of complying.

suev, thanks for the confirmation. If nothing else, it helps to know i am not crazy on this one. I even did it in front of the mirror, to check and see if I was unknowingly crossing my eyes when it went double ( i wasn't and when i cross them on purpose, it feels very different ( hurts these days) tan "relaxing them". I just need to refind my zen and hold it together for 11 more days.

I thought maybe you were second guessing yourself. Double - or blurry - vision is from the eye muscles being weak, causing them to focus in more variable ways. Sometimes you can see double vision in the front or on the sides, sometimes close up and sometimes farther away! And if both eyes are equally "droopy" you don't have blurry or double vision, even if the muscles are weak because they are equally weak!

I really hope the appointment goes well. I hate what neurologists tend to do to patients. They add to our "doubt" instead of reassuring us. It's normal to question what the truth is or isn't but it's not normal to doubt your patient!

Good luck on the 17th.

Annie

AnnieB.
I should be clear that my self questioning is mine and mine alone. I love my neuro. He has never doubted that there is something going on, and has told me he will be surprised if this does not turn out to be MG. He is NOT an MG expert, which is why he is sending me to the IUMed center for testing next week. ( about 90 min away, I am lucky). Dr Kincaid is supposed to be a well recognized MG/neuromuscular expert.
The biggest things that cause self doubt are 1) I have a MS in Developmental Biology ( although it is not my profession). so I know enough to be dangerous and can read scientific journal articles fairly proficiently. 2) I have spent my entire life in and out of hospitals, as my Dad and Sis both have a congenital dwarfing bone disease. I have atcively advocated and monitored both of them in and out of the hospital, so I understand the importance of being proactive. SO my brain is watching, but then it gets freaky foggy and I get all frustrated ( thus my copious note taking, spreadsheet symptom tracking, etc...).
There are reasons for the second guessing- a) my initial rep stim ( on mestinon, lab forgot to tell me to stop) showed a small ( but over the limit 14%) decrement on my legs, but an increment on my hand. As you know, an increment is indicative of LEMS, not MG. The neuro assured me that it was probably because he made a mistake,( thus the trip to indy), but it lingers there. b) I am sero-negative for both AchR and VGCC. This was surprising to me, as I am sero positive for thyroid ( I have had hashimotos for 10 years) and was expecting this to have popped up as autoimmune #2. c) My mom was diagnosed with MG at age 41 and "fixed herself"- got better, although she now has low level symptms that are neuromuscular but undiagnosed. And in Jan this year I had a daughter with unbelievable fatigue that tested negative for all the normal teen exhaustions and metabolic disorders, but recovered astoundingly well when she went on low dose fluoxetine for mild OCD. We all figured it was a depression fatigue, but then I found you in recent research they are showing recovery of SCC CMS with fluoxetine. With a family history and a life time history of tight/muscle cramping and odd muscle joint exhaustion that was always mysterious or tendinitis Dx,I have to wonder in one part of my brain if this is actually SCC, which would be made worse by mestinon, thus the worry ( not to mention worrying about both of my girls, if this is genetic....)
See- I told you I knew enough to be dangerous ;-)
The reason for the odd dose of mestinon was because I was on 60mg every 4 hours around the clock, but it was only getting me about halfway back to normal. He tried me on 20 mg every 6 hours instead, which was wonderful for the first dose, a little weird the second dose and almost made me swallow my tongue the third dose ;-) I was certainly overdosing at that level. Then we tried 90 mg every 6 hours, and it was good, but when active, I lost it about halfway through. I asked if I could try the extra 30 mg left from the old 120 dose halfway through when i was starting to fade. He said I could try it.
I know that some of my symptoms are from to much mestinon, rather than primary symptoms, but honestly at this point I can not tell them apart, which is why I am attempting to stop the mestinon for a couple of days, really feel the primary symptoms again and then ramp the mestinon up again. I had considered just trying to stay off of it until the 17th for my testing, to be really clean, but seeing how my symptoms are ramping up at only a little after 12 hours off the meds, I doubt very much I will make it that long.
I will go off again for about 2 days before the testing ( based on what happens here)

All of this will be partially resolved by testing next week. I know I need to take more deep breaths, trust in myself and know that one way or another I WILL get to the bottom of this. But some days, it just all spins out of control. ;-)

Sorry to have written a novella, but maybe knowing more info about my case and history helps out.

Thanks for clarifying that and jogging my memory. I was going to be a biochemist and still have that leaning, even though I went into the "arts" instead.

First, I wasn't implying that your doc was bad! It was my frustration with neuros in general showing. Sorry. And I never "talk down" to people; I just try to get all the basic info out there - don't want to assume anything.

Well, that's very interesting. If you have too much acetylcholine, you can get the opposite readings of MG. Though the LEMS can be tricky to gauge on an RNS. It temporarily gets better, then dips and then gets better again. But so can SCCMS's. I have to wonder if it showed an increment on your legs because you used them before the test but maybe didn't use your arms!

Fluoxetine is used for slow channel syndrome, as you know. So that is even more curious. Most of the SCCMS's tend to be autosomal dominant, so they are passed down from generation to generation.

I hope they will look for an R-CMAP. Did they see any on the RNS? Maybe they don't know what it looks like since not many people deal with the CMS's. Too bad they don't make copies of the waveforms for patients.

http://books.google.com/books?id=pnn...ntials&f=false

I suppose you could always try drinking some tonic water, which has quinine in it. Though there's not a great amount in tonic water, it might be interesting to try, since it does the opposite of Mestinon. I'm not "recommending" this because if you do have MG, it could make things worse! And I'm not a doctor, so I can't recommend anything.

http://jama.ama-assn.org/content/110/3/198.extract

http://jama.ama-assn.org/content/173/8/932.2

http://www.inchem.org/documents/pims/pharm/pim464.htm

Here's a question. How long do your eyes stay dilated after going to the eye doctor? The eye drops that numb the eye have atropine in them. So, if you had SCCMS, you might feel better. My eyes stay dilated for HOURS afterwards and my MG gets worse.

So heat and cold may make you better if you have SCCMS, which I'm sure you've already thought about. Coffee and nightshades might make you worse.

I'm sorry about your Dad and sister. I too have had lots of those kinds of experiences, unfortunately. You get "educated" very quickly in order to help. It might be useful if they did some genetic tests on your family, once they figure out what is going on for sure.

Since the CMS's are genetic, although they can have adult onset, were there signs of you having issues at younger ages?

I hope you get solid answers. Being in limbo is, at least it was for me, worse than knowing. Thanks for being so honest and putting all of that info out there. I'll bet it will help others.

Annie

http://neuromuscular.wustl.edu/mtime...tml#mgslowchan

MYASTHENIA GRAVIS: ACQUIRED SLOW CHANNEL SYNDROME

Weakness: Variable
Ocular: Extraocular muscle (EOM) weakness; Ptosis
Bulbar: Dysphagia
Limb: May be focal in legs or arms
Repetitive contraction: Fatigue after transient increase
Electrophysiology
Decrement at 1 to 5 HZ
Increment: Mild (50%) at 10 to 50 Hz
Repetitive compound muscle action potentials (CMAPs)
MEPPs: Low amplitude with Longer time constant of decay
AChR channel properties altered: Reduced Total current; Slow closure
Pathology
Inflammation: CD3+ T-cells > CD20+ B-cells
Higher # of NMJs on single muscle fiber
Normal number of α-bungarotoxin binding sites
Electron microscopy: Simplification of post-synaptic regions without degeneration of junctional folds
Thymus: Hyperplastic
Anti-AChR antibodies
Borderline titers by conventional assay (Mostly fetal AChRs)
Positive in assay of binding to adult AChRs: ? Recognize epitopes on e-subunit
Treatment
Response to anticholinesterase agents: Variable; Poor to Good
Also see: Hereditary slow channel syndromes

Annie,
You are good. Your tone was fine. I wanted to be sure I was not somehow implicating my neuro, who I love.

We did not look for RCMAPs with my local neuro, not sure that he even thought to and I did not know about it until later. It is on my list of things to mention and watch for next week.. no question.

The SCC CMS makes some sense to me for mixed results- as I am clearing the mestinon, I am finding that almost all of my leg weakness is in my thighs and gluteous. Very little weakness in my lower legs. Thus, with mestinon, the lower legs would have been OD and show the decrement, whereas the arm/hand, which is impacted more, would have shown the lingering increment.

Yes, there are tons of other life symptoms, just not classed with this. In middle school and into high school I had unexplained hand weakness and forearm pain. It would flare and then go away. Sometime so bad that I was crying and had little and grip and would end up in the ER with our family orthopedic. No one could figure out what was wrong. They would give me naproxen or other anti inflammatory, and then after a week or so it would fade. As I hit adolescence I went through a huge clumsy period. Not just clumsy, break everything inthe house clumsy. Notable. Restless legs- runs in the family, when my mom has had some bad episodes, the Dr. actually told her to drink tonic water and it helped ( she no longer can because of other med conflicts). TMJ in grad school. Jaw muscles so tight that I could barely get a straw in. valium and PT to relax it and learn face/neck stretch/relaxing . Have always had "tight" muscles, and both of my girls ( especially the younger) have issues with tight or sore muscle and being woken by charlie horses.
Trust me, if I have RCMAPS, we will all get tested for CSS. My mom has already said she would do whatever testing needed. She has so much night pain that I now recognize as part of what I experience that I would love it if a daily fluoxetine would take away her need for pain patchs and give her part of her life back ;-)
I have had bladder urgency and constipation issues ( yep, constipation, even with about 400 mg of mestinon per day in me). Neither of which are MG related, but both of which are LEMS or CSS related.

The more I thnk about it, the more I can rationalize. Then again, it might all just be coincidence and rationalization. It is an interesting intellectual exercise up to a point, then after that I am just spinning off and losing my cool, because there will be no way to resolve it before next week.

On the point of traces, I have considered having my husband attempt to take pics of it with the cell phone. Not sure if they will let me, and not sure how the oscilloscope screen will come out in photo.

Roguepuppet, I need to say something in defense of the way you are feeling. It seems that you feel you are capable of this zen when in fact your body may not be allowing it. I know this well after beating myself up for years for not being 'the nice' person I thought I was. I actually put a block on my phone for a couple years afraid of how I would respond if say the nurse from the docs office would call. I had become short and easily angered. I wasnt the quiet, gently intensely patient person my pastor used to marvel at when my kids were young.

What I discovered was that all that changed after 2 things happened. First I finally got the strength to go off my antidepressant. I was on Paxil and it has a very bad history of severe affects when one withdraws from it. I had tried to stop and had scary stuff. It was like day and nite. About 2 months after going off it I felt like who I always not some stranger who alienated even my kids.

The next thing was finding out my body struggles to keep enough vitamin D in place and consequently the parathyroid that elevates when one gets low on vit D. http://www.parathyroid.com/parathyroid-symptoms.htm Here is a link to the symptoms that can come with this. My vit D levels were in the single digets! And honestly I wasnt doing anything different than most people that dont get as much sun because they work in an office. I was supplementing more than the average person.

The point here is that I have every faith you can do zen. I can too. But I have hit this board with a flurry of messages on days that my vit D has dropped too far and the parathyroid is too elevated leaving me in an unnatural place.

To be clear here I would never suggest you stop an antidepressant if it is working for you. I am just one of the folks that cant take them and wish I knew this sooner. They 'make' me crazy so to speak. And the same for the vit D tho I am a firm believer that if one isnt sure they should get tested since I was doing the 'right things' and was dramatically deficient. I just feel that there are medical reasons we can be off what is normal for us. And that is worth exploring.

Annie59