[AnnieB3]

Annie,

Please forgive me but I have to pick up one point, which has become a bug bear to me.
Quote:
MG has binocular DV and when you close one eye, it goes away.
Mg has binocular Diplopia 99% of the time.

Fatigable Monocular Diplopia is extremely rare, that translates to rarely diagnosed. But the only way that monocular diplopia can be fatigable, is through muscles.

Before I got sick this spring, I had a long explanation for you about this, but didn't have a chance to post it. This time, it'll have to be shorter.

Monocular double vision (MDV) is NOT fatigable. That's kind of like saying that asthma is fatigable. Weak muscles can affect other disorders but they don't cause them nor do they make them weaker, per se.

Muscles are fatigable in MG. MDV is caused by something other than MG.

You can have binocular DV and MDV at the same time, but they have different causes. BDV goes away when you close one eye because the muscles of each eye are variably weak, thereby focusing the eyes differently. Close one eye, the one eye focuses.

I would normally post articles, but I'm so worn out and busy.

What's more important is that you get some real help. I wish you could go to France to see Dr. Bruno Eymard in France. Parlez-vous francais? He does speak English.

I'm sorry you're getting worse. Please take it easy.


Annie

http://www.myologie.org/ewb_pages/c/...esentation.php
http://www.myologie.org/anglais/ewb_...s_2003_196.php

http://www.congenitalmyasthenicsyndr...dromes2004.pdf

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2725239/

[juliejayne]

Originally Posted by AnnieB3

Before I got sick this spring, I had a long explanation for you about this, but didn't have a chance to post it. This time, it'll have to be shorter.

Please don't overexert yourself. I am resigned to the fact that I am going to be fighting this battle for many years.

However, I am a logical fault finder by nature.

MDV is caused by something other than MG.

Correct. MDV has by definition to be within the eye itself.
However the majority...99%... of the ophthalmological community seems to believe that MDV does not exist at all. That does not help.
From what I have been able to discover MDV is caused by Astigmatism in combination with High End Spherical aberrations.

Patients presenting with this problem, are TOLD that they have blurry vision. They are told this very strongly and then scheduled for Cataract surgery. Once they have had cataract surgery, any future eye problems can and are blamed on the surgery.

Maybe because of the language difference, maybe because I am stubborn I refused to accept a DX of blurry. I come from a printing background... I know the difference between blurry/fuzzy and double images! The doctors got very upset when I would not agree with their description of what I was seeing.

Anyway, that is MDV. But, so far as I am aware, neither Astigmatism or High End Spherical aberrations, are fatigable. Both might change over years, but not over hours.

The only thing that I can think of that can tire (be fatigued) over a few hours are muscles.

Now it turns out that there are muscles within the eye. The ciliary muscles of the lens and the sphincter muscle of the pupil. These muscles are tiny, but critical in changing the focus of the eye.

So my logical way of thinking was simply that MDV added to MG of these tiny muscles could produce the exact problem that I have. Double Vision, that varies over hours. That can be improved with rest. That can be improved with Mestinon.

I am open to any other suggestions as to what other mechanisms could account for these symptoms, but sadly NO ophthalmological or MG specialist is prepared to engage with me to offer an alternative. I suggest that is because there is none.

Sorry if this sounds a bit like a rant, but it is a major problem for me. Indeed in the time it has taken me to type this my eyes have tired and the DV is worsening. Time for a rest and more Mestinon.

[AnnieB3]

Rant away, JJ! It's a great coping mechanism!

How many doctors can't see smaller signs/symptoms, but only the knock you on your ego evidence?

Did you know that astigmatism can be caused by ptosis? I'm pretty sure that mine was.

There are many muscles in and around the eye. They think that might be one reason why the eyelid muscles are often one of the first signs of MG. They eyes are so easily put out of focus by weakness in any of those muscles.

A CMS is so common in Northern Europeans; and a few other areas. That's what usually makes the diagnosis of a CMS easier!

I find it very sad that all doctors don't have an open mind. Unfortunately, they're often more left-brained and want concrete or easy answers. But solving medical problems often requires creative, critical thinking and that involves using the right side of the brain and instincts, too!

Maybe if the medical community quit viewing the doctors who are freethinkers or on the cutting edge of doctoring as lesser doctors, than maybe all patients could have more thorough evaluations, better diagnostics, faster treatments, and less nonsense such as pinning stress, depression, anxiety, sexism, ageism, and other prejudice driven diagnosis' on us.

Doctors and patients alike have valuable insights to bring to the doctoring process. Many doctors whine about how much we patients talk or try to figure out our health problems, but how would they react if we didn't tell them our symptoms and only said, "You're the doctor, you figure it out."

They can't have it both ways and be able to solve medical problems. We are either a team while doctoring or victims of a doctoring dictatorship.

This paradigm has to shift.

Hang in there, JJ. You're bound to find a diamond in the rough in the doctoring profession sooner or later.


Annie

[juliejayne]

BTW, I forgot to say yesterday, that the information on CMS was very interesting. However I have no idea how I am going to be able to get them to test for CMS.

I guess that the CMS test is more expensive than the AcHr and MusK tests. Took 16 months to get them!