Thanks everyone, I will just have to be patient for a few more weeks
kathie

still no results
 

I still do not have any antibody results yet. I had my neuro visit. My evoc potential in my right eye was borderline, the brain MRI reading did not mention lesions. The neuro called it optic neuritis and put me on a non-steroid anti-inflamatory meds while waiting on the antibody results. It seems like he is leaning toward MS. I read somewhere that 50% of MS patients are first diagnosed with optic neuritis.

I guess the antibody results will be very delayed now because our area was hit so bad by the hurricane.

I feel I have enterred a deeper layer of limbo and I am not entirely certain I am heading in the right direction. I have my regular GP visit in 2 weeks and I am going to ask for a referral to a neuro-optomologist. Did anyone else go down this route?

thanks,
kathie

A neuro-optomologist is excellent choice. Alot of people here got excellent results from a neuro-optomologist. You are lucky to live near one. They are very hard to find. Good luck
Mike

lost antibody test and my patience
 

I cannot believe it. After waiting 3 weeks for my antibody test, I find out that the phlembotomis messed up and my blood work was never submitted for antibody tests. I now have to go get blood work done again and start the waiting game all over.:mad:

I guess the test is so rare she did not know what color tube to draw.
kathie

I just had a MG panel taken yesterday. We will see who gets theirs back first.
Mike

Oh, Kathie, I'm so sorry! I know how that feels. Of all the emotional turmoil of this disease, I think I found the time when I was waiting for the antibody test to be the hardest. You feel like, "OK, tell me what I'm dealing with so that I can start dealing with it. But how am I supposed to establish myself mentally when I don't know?"

Hang in there. I'm sorry you're going through this.

Abby

Thanks so much for your understanding. I am not sure if when the results comeback if I will cry with relief of finally having a diagnosis or cry with sadness of being diagnosed with a terrible disease or cry with frustration at a negative result and no diagnosis, but at any rate, I am sure I will have a good cry.

kathie

The antibody test came back negative and the neuro diagnosed me with optic neuritis and put me on an anti-inflammatory. My eye felt better and it stopped dropping for a while. He did not do the MUSK antibody test. After the prescription ran out, all the funny sensations and quivering lid came back again.

I called my GP and asked to go to an optic neurologist. I had the appointment today. He did some test and found my right eye had a larger pupil dilation and did not respond well to looking up and down. He said he thought I have MG. Finally, some one who listens. He is doing the MUSK test and the SFEmG. I will have a bit of a wait for the SFEmG.

I have been feeling better with the cold weather, but I had a scary episode last week where I could hardly move my legs, it lasted only a day.

Alice, why did the anti-inflammatory help my eye?

ALso, does anyone else get the quivering of the eyelids besides the droopiness? It looks a little freaky when they start to quiver and my field of vision starts to vibrate.

thanks
kathie

Kathie, First, which anti-inflammatory med did you take?

It's possible to have TWO conditions. Or more. ;) MG is not an inflammatory condition.

So, your eye symptoms returned when the anti-inflammatory ran out? Or were you on Mestinon and that ran out? Just trying to be accurate. Do you have a lot of eye strain during the day?

What did the Neuro-Ophthalmologist think of the optic neuritis diagnosis?

When you had that episode where you could barely move your legs, had you done a lot of walking that day or in the past two?

I'm glad you have a couple of doctors who are taking you seriously! N-O's have very specific tests to look for fatigable muscle weakness, which is why they're so great to go to.

This diagnostic journey is tough enough without people treating you poorly! What's seriously funny is that it's often the doctors who need the reassuring while trying to figure this all out. :rolleyes:

I have to say that I'm concerned about your episodes of sudden weakness. It would be a good idea to take it as easy as you can until you get diagnosed and treated. If you experience generalized weakness, shortness of breath where you can't take a breath in or out or are unable to swallow, open your eyes or move, you need to dial 911. As long as you know the parameters of this stupid disease, you can take care of yourself. So try not to be scared! But you do have to act quickly if you get really weak.

I'm sorry you've been through so much. I hope you get answer soon. Remember, even if your antibody tests are negative, it doesn't mean you don't have MG. Antibody tests fluctuate and you might test positive at a later date.

Take it easy and try to do something to get your mind off of this. :hug:

Annie

Annie, they put me on indomethacin for 2 weeks. None of my symptoms (fatique, muscle weakness, walking problems) improved, but I did notice that my eye drooping and quivering did subside, but immediately returned after the prescription ran out. I work on computers for long hours, so I definitely experience eye strain.

I have not been on mestinon yet. The neuro-optomologist said he though it was MG, he never explicitly said it was not optic neuritis.

The episode when I had great difficulty moving my legs followed a day after I had been standing a lot. It was also after the indomethacin (COX 1 & 2 inhibitor) ran out.

Kathie