meniston trial
 

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 :)

oops, I meant mestinon

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

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

:mad: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!

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

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.

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 :)

DesertFlower,
Thanks, that helps. Since the half life of Mestinon is so short I didn't know if I would see all the benefits right away. But in your case, it sounds as if your double vision went away slowly.
I am only on day 3 of 60mg, 3 times a day. I feel like my ptosis is slightly better, and that my eyes react faster, and movement is less restricted (I was not able to look up or to the right fully). In the next few days, I will begin (per my neuro-opthamologist's instructions) to play around with the dosage to see what sort of effects I gain.
Thanks for the hope!

I noticed some improvement with my vision within a day or two of starting the Mestinon. I was on Mestinon alone for about 6 months, then Prednisone was started. Although the neurologist told me that I should see some additional improvement within a month of being on prednisone, it was close to 2 months before I noticed changes.

Unfortunately, even with the improvement with mestinon and pred, my double vision continues to be pretty much constant, and varies dependent on my activity, stress level, etc. I'm trying to be patient through all of this because I understand that it may take an extended period of time before the medication is entirely effective. In addition, I wonder if the double vision is treated during the early stages, then perhaps it is more responsive to the medication. I've had double vision for 8 years, but just being treated within the past year.

I hope you continue to see improvement on the mestinon.

Cate

If my memory is correct I started on 80mg of Prednisone for one week then tapered 20mg a week till complete. During the treatment I felt really good and could see some vision improvements. My wife said I wouldn't shut up, I was talking a mile a minute. The bad thing was it triggered an episode of diverticulitis which put me in hospital for 5 days of IV treatment. We are 90% sure it was caused by the steroids after much research.

Yes I have generalized MG. I have positive binding antibodies. I have had 2 IVIG treatments this week and 2 more next week but so far no change. My problem now is weight loss. I have lost 16 pounds since I went off steroids. I think it might be the imuran.

One thing I have learned about this disease is what works for one person doesn't work for another. It boils down to trail and error. That is why they call it "practicing medicine".
Mike

http://books.google.com/books?id=qRY...page&q&f=false

Mestinon is not as accurate in determining if a patient has MG as Tensilon is.