All,

Greetings! I was finally formally diagnosed this morning. Ocular MG. Positive SFEMG. Positive Tensilon Test. Positive response to Mestinon. Seronegative.

My neuro ophthalmologist said that my current symptoms (double vision and eyelid) are mild and responsive to Mestinon so no change in my current treatment plan.

He mentioned that there has been anecdotal studies that show that those that take prednisone with ocular only MG have a reduced risk of getting generalized MG. He said given it was a historical study, they are working on funding to drive this as a large study soon to prove one way or another.

I have a few questions for this group around this:

#1) Given my symptoms are minor and responded to Mestinon is there any reason for me to get a second opinion about other treatment options to prevent progression to generalized?

#2) How often and how to each of you engage with your PCP now that you are diagnosed? Do those that have ocular only work with a general neurologist or an ophthalmologist only?

#3) He stated that I could continue all my activities given it was showing ocular only? Any thoughts on that? I know the risk of a crisis but wondering if it could pop out of the blue or if I should be comfortable getting back in to a running routine for example.

#4) AnnieB3 around? Or anyone else with thoughts on care in MN? Is it worth a second discussion at Mayo? Welcome any feedback.

Thanks again to all for reading.

Well, I'll bet you stumped the docs by having a positive SFEMG yet a negative antibody test. "Congrats" on knowing what's going on. That antibody test might change if MG becomes generalized.

So, do you want an MG expert (there aren't a lot of them) or a nice neuro willing to learn? Again, you'll have to let me know what part of town you want to see one in! I'll PM you names once you tell me. Did the N-O diagnose you or did you see an MG expert too?

1 and 4. If your insurance allows for it, a 2nd opinion at Mayo couldn't hurt. Dr. Harper is usually the neuro people are referred to. What Mayo does, however, is often redo all of the tests because, well, they're Mayo. They often don't trust other docs to do their jobs well!

There's an alogrithm of treatment many neuros follow for MG. Sometimes they tend to get more aggressive with male, ocular MG patients. Prednisone is often tried after the initial Mestinon. That comes with some MAJOR side effects and should be thoroughly researched before you get hooked on it. Pred is very hard to come off of. IVIG is expensive and can do a number on your veins after awhile; though you can get a port. Plasmapheresis is often used as a means of getting an MGer out of an "MG crisis" but has been used as treatment on some "brittle" MGers or other "subtypes" of MG. Immunosuppression (besides Pred) is often what they do if MG is getting worse but those drugs don't come without problems either. There are more drastic treatments (stem cell) but you have time to learn about all of them.

Have you started the Mestinon? What dose and frequency? Is it helping?

3. So, now that you know you have MG, you should know that if you push it, it will push back. You "might" be only ocular MG right now but that does not mean it won't progress. What muscle(s) did they do the SFEMG on? Some studies have shown that even ocular only MG patients have a positive SFEMG on muscles other than the facial ones.

As far as continuing activities, you'll have to gauge how you are doing on a daily basis! MG can be managed well by alternating activity with rest, though that isn't always enough. Don't get overheated because that can make MG exponentially worse. And when you run, you'll get overheated. I know that MN is awesome for running outside but you'd better have water and a cell phone with you! And maybe someone to run with, just in case.

Very few people who have MG remain as ocular only. What can happen in the first year of being diagnosed with MG is that a person may not fully realize how dangerous this disease can be and might push themselves too hard. MG can go from ocular to generalized quickly and you might find yourself in an MG crisis, where you can't breathe, move or swallow well. I'm not saying that to scare you but to let you know the magnitude of the disease you're dealing with.

Can MG progression be stopped if treated early and aggressively? I don't have a good answer for that. MG is unpredictable. And so much depends on each individual case. MG is not the same for everyone.

2. I work with a neurologist AND a pulmonologist. I keep my internist in the loop of how I'm doing but they are NOT my primary MG doctor! MG is an odd little disease and you need someone who "gets" it. It might be a good idea to get a pulmonologist to do a baseline set of breathing tests right now. Then, if things do progress, they'll know how relatively worse you get. They need to do MIP and MEP too, which are specific for a neuromuscular disease. Again, depending upon where you are, I can point you in the direction of a good pulmy too.

If you ever go into a crisis, neurologists and pulmonologists work together in a hospital setting. If I am getting worse, I can get PFT's (pulmonary function tests) done right away. I have standing orders for them. It is much better to catch MG before it gets too bad! The worse you get, the longer it can take to recover/improve.

Did they do a chest CT? That is often done to see if you have a tumor of the thymus. Some MGers do, most don't. Some have a hyperplastic thymus, which means that it's larger than it should be. A thymectomy is sometimes done early on in the disease to see if it helps bring about remission. The studies are really not that great yet on success rates.

The "historical studies" he's referring to are old. You can head over to the medical library at the U of MN and read them! I did.

MG can be difficult to live with but it's not impossible. I'm truly sorry that you have to have it. I think it's so hard to live with because it's so variable and can make planning your days harder.

If I can help more, please let me know. These guys have had more meds than I have (can't do more) and can let you know the details of them. There are many great posts here to read up on. I hope you stay ocular!

Annie

Thanks for the response Annie. Moderators: would it be possible for me to get PM capabilities so I can PM directly rather than boring everyone else with my details .

1. I have been on 60mg 4xday of Mestinon and it has significantly helped. Other than being cautious (and anxious) about the disease spreading and avoiding strenuous workouts, I have continued to live and work as I did before.

2. The N-O diagnosed me directly so I have not seen a Neurologist. He seemed to know quite a bit about Ocular MG but am concerned about his overall expertise in the treatment.

3. He did order a chest CT scan to check my thymus gland so I'll know more early next week (took the test yesterday morning).

4. He was unfamiliar with time released Mestinon but was willing to prescribe. That is part of my concern is I would like to see a Neurologist who can help me regulate my mestinon. I continue to be fairly twitchy (especially after my first dose in the morning). My N-O said that based on my mild SFEMG results and my response to Mestinon, that he would see me in a year or to call if symptoms get worse in my eyes or he'll refer to a Neurologist if the symptoms expand.

5. I live in the SW suburbs of the Twin Cities but am willing to drive as needed. I would love to get a neurologist who has experience in MG, can help me regulate my mestinon as appropriate and can provide a second opinion on whether additional medication at this time would be appropriate. If not, I'm living very well now but would like to know if there is anything else I can (or shouldn't) be doing to limit risk of getting worse. So any suggestions in the Twin Cities of Neurologists with a history of treating patients with MG would be great.

6. I continue to debate the Mayo option. It is 1.5 hour drive but I could swing it. It is out of network so I certainly can't afford to repeat all of the tests done to date. I may be able to swing a single specialist visit but if there are good neurologists up here, I'd like to find someone to be my primary point of contact going forward.

Thanks again for everyone's support. As the title suggests, I am going to focus on gaining an understanding of treatments and recommendations on how to prevent ocular MG from moving to generalized. Many of you have been down this road a dozen times I am sure and appreciate your advice. I certainly will continue to share my results and any other information I find on this topic.

Are there any other ocular MG patients out there that were immediately prescribed something other than Mestinon? How did you respond? Any Minnesota MGers with suggestions for neurologists or support groups?

Thank you all,
TriHead

Hello
you do have "PM capabilities".
Just got to your User CP and scroll down the left menu there till you find "Send Message"

You can also PM any other member by going to their profile page where you will see the option to send a private message or post a visitor message on their page (please note visitor messages are not private)
Under Every member's user name on their posts there is also a drop down menu that allows you to PM them

Trihead, I don't want to sound "snarky" -- but, IF you are doing "ok" right now, do you REALLY want to risk becoming a DIABETIC, or getting OSTEOPOROSIS, or doing some OTHER awful harm to your body -- THANK you MR. Prednisone -- just on the "slight" chance of escaping generalized MG? (With MG, IMHO either the disorder hurts you OR the drugs hurt you. )

I've done quite a bit of research (although probably not as much as your neuro-opth) -- and I've never heard of Pred. preventing Ocular from going into generalized. Probably why your doc saying a STUDY needs to be conducted.

It could be YEARS before you go generalized -- or you may stay ocular FOREVER. As Annie said, you just never know..........

BTW, a YEAR between appointments??? YIKES!! I mean, YIKES!!!!!!! (Even WITH the opportunity for you to call him -- I mean, you are the patient -- you don't know WHAT to "look" for!!)

Thanks Chemar. I may be confused but not finding it. I attached what I am seeing. Maybe I am missing it?

Attached Thumbnails

   

take another look please as you really should be seeing it.

Thanks Chemar. Now it pops up.

Much appreciated,
TriHead

ps you may need to "clear cache" as you may be loading an older cached page version