[madnurse]

It has been a long time since I have posted anything. As I have heard many other say, this road to a diagnosis has been a long one, and very frustrating at times.

I started having double vision Jan 2010, variable bust worse with fatigue. I drive with a patch, but feel that my peripheral vision is already so limited that at times I am not able to drive. Mostly, this has just been scary, and a nuisance in my life.

During the last 13 months, I have seen countless doctors and had every test imaginable run. Good news is that everything is negative...bad news is that I still dont know what the cause of my failing eye mucles are (i have no generalized symptoms, ocular only).

I now have a wonderful nuero-opthamologist at MGH Boston. He has started me on a Meniston trial to see if it improves my symptoms. He told me to play around with the dose and see what improvements I notice. I am glad that he continues to work with me to find a solution (and takes me and my symptoms seriously). I have been taking meniston 60mg, 3 times a day and feel like i have some minor improvements. I feel like it is easier to keep my eyes open (but with that said, my husband has not noted any improvement in my ptosis) and perhaps my double vision is improved is one direction. I hope this isn't just my imagination combined with wishful thinking.

Anyway, I just wanted to see if any others have had a similar path....going on a meniston tiral with no "real" diagnosis. Or those who have purely ocular symptoms??

Thanks for reading

[madnurse]

oops, I meant mestinon

[Stellatum]

Hi, I don't have advice about Mestinon for Occular Myasthenia Gravis (I highly recommend abbreviating that as "OMG!"), but since you're in Boston I can't help but recommend the neurologist who finally diagnosed me. He specializes in occular myasthenia. I am seronegative and had previously had two inconclusive SFEMGs, but he did a stimulated SFEMG on my face that was finally conclusive, and I got my diagnosis.

He also noticed some things about the way my eyes move that he said he's only seen in myasthenia--things that my regular neuro (who specializes in neuromuscular diseases) had never even heard of. This is all the more impressive since my eye involvement is extremely mild. But he is so good at the eye stuff that he was able to diagnose my generalized myasthenia gravis on the basis of it. If he can do all that for someone like me, imagine what he can do for someone who actually has eye symptoms!

I know that you said you're happy with your current neurologist, but this guy seems to be one in a million. I'm not sure if I'm supposed to post doctors' names here, so I will send you a private message with his name.

Abby

[madnurse]

Abby-
Thanks for the reply! I will keep your Dr. in mind in case I hit a stumbling point. But for now, I really like my neurologist. Unlike my previous neuro (who gave me the referral to him) and my PCP, this guy takes me seriously...and more importantly, he picked up ont he deficeits I had immediately. But recommendations are always helpful.
I wanted them to do a SFEMG to my face, but never got it. I am tired of them testing my arm...I have no generalized symtoms!!

[Stellatum]

Originally Posted by madnurse

Abby-
Thanks for the reply! I will keep your Dr. in mind in case I hit a stumbling point. But for now, I really like my neurologist. Unlike my previous neuro (who gave me the referral to him) and my PCP, this guy takes me seriously...and more importantly, he picked up ont he deficeits I had immediately. But recommendations are always helpful.
I wanted them to do a SFEMG to my face, but never got it. I am tired of them testing my arm...I have no generalized symtoms!!

I sure do understand about wanting to stick with a doctor who gets it! I am happy with my current neuro for the same reason. When I came to him and said, "Look, this is really affecting my life! We need to do something!" that's when he referred me to the Boston doctor. So, I got the best of both worlds: I got to stick with the doctor who treats me well, but get the opinion of a real specialist. I am reminded constantly on this list that not everyone has it so good...

Abby

[catie]

Hi, I was diagnosed with OMG from a positive Tensilon test, which was done by a neuro-ophthalmologist. My SFEMG was negative, but the neurologist stated that the EMGs can be negative, particularly with ocular MG.

I had been started on Mestinon several months before the testing, purely on clinical symptoms. Although the mestinon did not totally alleviate my double vision, it did clearly decrease my double vision and make my eyes feel "more relaxed."

Have you had a Tensilon test? If not, this might be an option. If you're having purely ocular symptoms, this test would be best performed by a neuro-ophthalmologist.

Cate

[madnurse]

Originally Posted by catie

Hi, I was diagnosed with OMG from a positive Tensilon test, which was done by a neuro-ophthalmologist. My SFEMG was negative, but the neurologist stated that the EMGs can be negative, particularly with ocular MG.

I had been started on Mestinon several months before the testing, purely on clinical symptoms. Although the mestinon did not totally alleviate my double vision, it did clearly decrease my double vision and make my eyes feel "more relaxed."

Have you had a Tensilon test? If not, this might be an option. If you're having purely ocular symptoms, this test would be best performed by a neuro-ophthalmologist.

Cate

Cate,
I just mentioned the tensilon test to my neuro-opthamologist and he said he had considered it, but has decided against it for now. He said that tensilon is not easy to get, and that I would have to be hooked up to cardiac equipment when they administered it. We decided on the Mestinon since it seemed the least invasive. My eyes do feel more relaxed as you have said....i'm not straining quite as much to keep things in focus. Do you remember how long it took for the medication to be effective? Just wondering if it happens right away, or if improvement is gradual.

Thanks!

[pingpongman]

Hi
I have had double vision since August. I have taken varied doses of Mestinon, Neostigmin, Prednisone, and Imuran. I am currently on 300 mg of Mestinon and 150mg of Imuran plus just completed 2 treatments of IVIG and I still have double vision. One thing about the steroids, I am 70 years young and the steroids caused me to spend 5 days in the hospital with diverticulitis so if you have a pre-existing condition DON'T take steroids. That said the steroids did help my vision.
Good Luck
Mike

[DesertFlower]

Madnurse,

It took 5 to 6 months for the mestinon to (mostly) make my double vision go away, it was a gradual process. I have generalized MG, but in the beginning the double vision was my worst symptom. We all react differently, of course, some people find that Mestinon does not completely treat their double vision, I am thankful that it did for me.

I hope this helps.

[madnurse]

Originally Posted by pingpongman

Hi
I have had double vision since August. I have taken varied doses of Mestinon, Neostigmin, Prednisone, and Imuran. I am currently on 300 mg of Mestinon and 150mg of Imuran plus just completed 2 treatments of IVIG and I still have double vision. One thing about the steroids, I am 70 years young and the steroids caused me to spend 5 days in the hospital with diverticulitis so if you have a pre-existing condition DON'T take steroids. That said the steroids did help my vision.
Good Luck
Mike

Mike,
I am assuming that you have generalized MG as well as ocular symptoms? My doc did put me on prednisone, but just for 1 month. He was thinking I had SREAT (steroid responsive encephalopathy associated with autoimmune thyroiditis) since i also have hashimotos. The steroid make me feel WONDERFUL, but did nothing for my double vision. But I have also heard that often times it takes several months of steroid treatment to respond.
Thanks for your input