Diagnosis: Ocular Myasthenia Gravis
History: Started seeing around September 2008 and double-ignored this for a bit thinking it was my fairly new glasses.
Nov 7, 2008 my mouth started drawing and my tongue was numb. Went to ER and had CAT SCAN. Negative.
Went to Optometrist - told me it was my Fibromyalgia and weak eye muscles causing this. Didn't agree with that and called my family doctor who had me see an Ophthalmologist the next day. Had MG blood workup done - came back negative for MG. Went to Neuro Ophthalmologist - examined eyes and said they were strong. Had MRI - clear. Went to Neurologist - had exam and he immediatley said he thought it was MG. Started on Mestinon, which did no good at all. Had EEG - clear. Went to MUSC (Medical University of SC in Charleston) to Neuro-Muscular Neurologist. Had more blood work done and SFEMG. Blood work negative. SGEMG positive. Started 20mg Prednisone Feb 2009. In March 2009 he raised the amount to 60 mg daily to treat it aggressively and I also had the gamma globulin infusions for 5 days. By now it was April and the vision was still terrible. I took Short Term Disability through work and stayed home for 3 1/2 months. The side effects from the Prednisone were actually worse than the disease. Gained 35 pounds, couldn't sleep more than 1 1/2 hrs per night....and I'm sure you know the rest!
Vision improved by mid-June and I was back at work. Started decreasing amount of Prednisone and added Imuran. Couldn't take Imuran and changed to CellCept in January 2010. Some days I see ok and have no trouble driving, others I don't drive because of the DV. Seems worse at night and when I am really tired. They are discussing Plasmapheresis next. Not sure I want to go through that.

It is getting harder to work, especially using the computer and sometimes driving. Not sure what to do - I ask myself if I need another opinion? My mother has temporal arteritis and I wonder if that is what I could have. Just in a confused and somewhat depressed state about this. Can't do what I used to or what I want to and have no energy. Any feedback will be greatly appreciated. Thanks!

Welcome to NT

So sorry you're having a hard time getting diagnosed.

There's lots of things to learn about you. I've had eye problems all my life. Now they are compromised and I don't know why either. But I'll go get checked again, get another pair of glasses and then I'll buy some extra magnifying glasses to lay around so they'll be handy.

It's always good to know that you don't have so many other things with all the negative testing. You can be happy about that. There's lots of incidential findings of tumors and cancers. so none of that turned up.

I invite you to scroll down our many forums to find one that interests you. There's so much info here that you could find I'm just not sure where to direct you. Some others will come along soon and maybe have a better course to suggest for you.

See you around the boards

Hi Kathie,

welcome to Neuro Talk, from a fellow MGer.

Here's a link to the MG forum, http://neurotalk.psychcentral.com/forum77.html

there are lots of helpful people here to help out with all your questions.

It really is such a difficult disease, as it affects us all so differently. Getting on top of the symptoms can be difficult. When I was lowering my prednisolone I would get double vision, and my neuro would either send me for ivig or up my pred slightly again.

Please drop by the forum as there are more people there who can help out
Kate

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help. There are great number of fellow members here to assist as possible. My thoughts and prayers are with you.

Again welcome, looking forward to seeing you around.

Darlene

Just wanted to add my "hello" and welcome you to the community. This is a good place, and you'll find lots of support here!

Hi, and welcome to NT! This is such a great place with many caring and helpful people.

We're glad you found us!

Welcome Kathie to Neuro Talk!!

Sorry your having a hard time getting to bottom of whats causing all your problems. Hope you can get some info soon.

Lots of people on board might be able to help and if nothing else, be there and listen. Take care!!

Well, if you can avoid driving, I would certainly do that.
Oh, Hi by the way, my name is Melody and I'm married to a man with severe neuropathy in both feet. That's why I mentioned the driving.

First, welcome to our little group of nice people. You will get all sorts of good info here.

Let me tell you a bit about my husband.

My husband drove until about 9 years ago. His feet have been getting numb and number for almost 20 years.

So I had no idea how numb his feet were until the day we got in the car, he put his feet on what he thought was the accelerator and stepped on the brake, and then he couldn't tell which was which.

I demanded that he stop driving that day. He did, he gave back the car, and that was that.

When you can't be sure of your driving, well it's something to think about.

You don't want to get into an accident and have any more problems, right?

So here's hoping that things clear up for you and your vision stabilizes, but if it does not, then please think about what I said.

Take care, Melody

Hi, I just looked up Temporal Arteritis on Healthline.com and read about it and found the following (you did indicate that you wondered if you could have this, right?)

Here is what it said:

The disorder may develop along with or after polymyalgia rheumatica. Giant cell arteritis is seen almost exclusively in those over 50 years old, but may occasionally occur in younger people. It is rare in people of African descent. There is some evidence that it runs in families.

Maybe you could ask your primary care about this or do some further poking around on Healthline.com. I hope you get some answers.


take care, Melody

Hi Kathie,
Just wanted to welcome you to NT. I am sure you will find some answers to your questions. I am sorry to hear all that you are going through.

I do hope you start to feel better soon, and that dark cloud over your head disappears.
Take care.