Need some guidance
 

Hello everyone! I'm new to this forum and so glad I found it so I can talk and get some support. At the end of November I started to see double vision. At first I thought it was just to much stress at work and trying to keep up with daily acitivies. Then I started to get headaches and not feeling myself. Very tired not able to concentrate and wanted to sleep allot! In January I started to get anxiety attacks and just feeling down and crying for no reason. Work was getting to me and just did not want to leave my house anymore. Went to the doctor (eye doctor) and told him my symptoms. He decided to test me for MG. Blood results came back negative. Then went to see a neurologist and had anther blood test, MRI on my brain and chest. Everything looks good. After seeing him for a month he "thinks" I have MG and wanted to start me on medication, but I refused until I get actual black and white results that I have this. I decided to see a nutrientist and started on herbs for thyroid and adrenal gland. Feel so much better! I don't feel tired but still have the double vision. Waiting to get an EMG to see what that will say. It's been a month now where doctors are not sure what is going on with me and I'm still trying to research this on my own. I'm only 32 years old and feel that I'm falling apart. ;o(

My mother got double vision due to uncontrolled diabetes, drinking too much and smoking - that effected her vision. There can be a few things that effect vision, but MG "seems" to effect it more at the end of the day and is more fatigue driven.
I am sero-negative, that is to say, my blood tests are negative and I am not sure I have it. My EMG came back negative but my SFEMG came back positive.
Did you get a complete check up for all your hormones?

If the neuro thinks it's MG, it likely is, as they don't give those diagnoses out lightly. Sometimes there simply isn't a "black and white" answer as you can test negative on blood but be chock full of MG antibodies (that there is no current test for.) I am one of those people and am going on 10 years of MG hell.

A trial of mestinon wouldn't hurt. However, be aware that it doesn't always work too well for double vision. There are no long term adverse effects from a short trial of mestinon and you'll know quickly if it works or not.

As for the nutritionist, etc. Go for it--to improve your overall health. However, don't expect it to change the MG symptoms. If it were that easy, I'd have been cured years ago. I've tried everything from acupuncture to vegetarianism and here I sit, with double vision.... (on a ton of regular meds, too.)

Good luck,

Missy

Well I got my thyroid checked with a blood test and came back fine. What other tests can be done for hormones?

Hi Missy,
If you don't mind me asking how old are you? Do you work? If so how do you work with double vision. I'm home right now but eventually have to go back to work.

Hmmm. If that was the standard panal, then even your thyroid was probably not correctly as you need a free T3 and free T4 as well as the TSH. The other thyroid tests are not so helpful. TSH is only marginal as far as accuracy - if you have a pituitary problem (and one does not know until the other pituitary hormones have been tested) as TSH tests what the pituitary is telling the thyroid. Not how the thyroid is. Did you get thyroid antibody tests? You say you are taking herbs for your adrenal - that kinda makes me worry as they have done no testing for the adrenals and adrenals are funny things and like to shut down more if they get mad or get lazy.
BTW, always get copies of your tests.

Hi Patch,

I'm 45 now. Began MG in 1998, managed to work until Nov of 2001 (far longer than I should have, in hindsight.) My symptoms are very odd in that they come on full force for 2 weeks or so, then disappear almost totally for 10-14 days. I have had a drug dependent remission of 2.5 years but have been fully and severely symptomatic for the last 3.5.

When my DV is at its worst, it is more severe than I've heard anyone else describe. My eyes actually cross and the images intersect each other at odd angles, making my "world" very disorienting. I have to cover one eye to keep from crashing into items and falling. Driving is interesting or non-existent. Then it goes away, and I can enjoy life for a few days.

Hope this helps,

Missy

Thanks Lizzie
I'm on prednisone for 3 weeks and nothing has occurred to help me. I did get and MRI and they saw an orbital psuedotumor in left eye which is the eye with the double vision. However the doctors are puzzled because my symptoms don't match up with someone with this. Saw a new nuerologist on Thursday and he said that he's going to do some research on me but he is thinking ocular myasthenia gravis??? He explained it to me. I will just keep praying for that light at the end of this dark tunnell.