New member help please
 

Hi
I was admitted to hospital as was experiencing double vision. In A and E the neuroscience registrar diagnose MG. I was discharged with pyridostigmine 3 days later still double vision, I have a neurologist appointment to confirm diagnosis. I am really worried as I am having pains downs my neck, is this a sign it’s spreading to other areas of face etc? A couple of questions
1/ I am a headteacher and am struggling to see how I will be able to carry out my duties as it’s a really high pressured job
2/ I have heard horror stories about other meds that have serious side effects.
3/ I am wearing an eye patch as it stops the double vision and stops me feeling sick

Any advice or guidance appreciated

Thanks

Dave

Hi Dave

Welcome to NeuroTalk; I hope that you will find the community as knowledgeable and supportive as I have :).

I don't know enough about MG to say much that is helpful but I am sure that other members will be able to.

All the best.

The best I can do is TAKE IT EASY. If you aren't happy with your neuro, find another. Regardless of their degree most don't know much about MG. You need to find you an expert, Meanwhile LISTEN to your body. If it says you need to rest then REST. Keep in mind we are all different. Heat and stress bother me the most. As for the meds, yes most are bad but it comes down to a matter of what quality of life you want.
Prayers
Mike

Hello Dave,

I'm so sorry to hear about your MG diagnosis. How soon is your follow-up appointment with a neurologist regarding your myasthenia gravis? I hope you will not have to wait long.

Mestinon can be very helpful for many patients. Sometimes it takes awhile to find the right dose. It may be possible that you are not on the best dose for you yet. It also has a limited dose effectiveness. When you take it, it takes perhaps 30 minutes to start working, and then it works for maybe two hours after that. After that time, it wears off, and by three hours, it is essentially done. If your doses are more than three hours apart, even if it is helping somewhat, you may notice that you are having trouble between doses.

Are you having any other symptoms, like trouble with breathing, swallowing, or walking? If so, be sure to get back to A&E right away if these symptoms get worse, especially if you do not have an appointment to see a neurologist soon.

There are some patients who are able to keep working at their jobs once their symptoms are under control, so I think it is possible. Another strategy with your vision is to try closing your eyes and resting when you have the opportunity. If you have a break between classes or at lunch, give your eyes a break. Close them, even if you do not sleep. This will give your eye muscles a rest, and will help your vision. I do this, and it helps me. If you have a small ice pack and can bring it with you to school, putting it around your eye area for a few minutes can also help rejuvenate your eye muscles for a little while. But mostly I hope you can see the neurologist soon, and they can give you better advice.

Best wishes,
Erin

Hi, Dave. Welcome to NeuroTalk! You have some good advice from these guys.

How much Mestinon are you taking, and how often? A neurologist can help you adjust that regimen to try to get the right balance for you. Be careful about taking too much. Patients can have what's called a "cholinergic crisis," where too much acetylcholine is making its way to the muscles. Finding the right amount/timing of Mestinon can take a while.

I believe that placing tape over the lens of glasses on the side of the droopier eye can help. I have forgotten the details of that little trick, so if anyone can help Dave out, please do! A neuro-ophthalmologist can help with that for you!

There is no way to predict how you will do with MG. Managing MG is as much about alternating activity with rest as it is about drugs.

Yes, some drugs can come with various side effects. Steroids tend to have the most damage in the long run. And steroids are hard to withdraw from. Immune suppressant drugs such as Cellcept, Imuran, Prograf, or others come with cancer risks. But if you have a good diet and introduce good antioxidant supplements and foods (i.e., mushrooms), that can help. IVIG and other treatments need to be thoroughly researched first, so that you can determine what might work for you. These days, they save IVIG or plasmapheresis for when a MG patient has a crisis. Although, there are patients who need to do those treatments on a regular basis.

MG for one person is not the same for another. Much depends upon your overall health or other health conditions. And having a great neuro who will help you figure out what treatments are best for you. There is hope for everyone!

One step at a time! Easier said than done, especially when you're concerned about being able to work and support yourself. I wasn't able to do drugs other than Mestinon. I can't work, and manage with rest, Mestinon, Flovent (for asthma), and not pushing myself! Also, I stay out of the heat/cold, try not to be stressed out (I meditate daily), have enough sleep/naps, take care of any infections right away, and take as good care of myself as I can. So far so good.

Good doctors can really help. A pulmonologist is also important for a MG patient to have. They work with neurologists in an ER/hospital setting if MG patients become worse. They can do basic breathing tests to check what your baseline is, especially MIP (maximum inspiratory pressure) and MEP (maximum expiratory pressure) tests that are specific to neuromuscular diseases. They show how well someone is doing at breathing in and out.

When we become worse, other tests they can do are an O2 reading, arterial blood gas, ECG (to see how breathing is affecting the heart), and a good clinical exam!

Please don't be overwhelmed! I have had MG my entire life (I'm 59) and have had many exacerbations but only one full-blown crisis. My life isn't exactly what I dreamed of, but I try to enjoy every day! Attitude and reducing expectations helps a great deal. So do paper plates, naps, hiring someone to clean, etc.!

As far as MG spreading, most everyone ends up with generalized MG, where many muscle groups can be affected. I could go into more detail, if you wish. Just don't freak out! ;) Many people manage these symptoms well.

Do not hesitate to go to an ER (rather, A and E) if you become worse. Are you in England or Europe? MG weakness can come on so slowly that you might not notice that you are worsening. If you can't breathe, swallow, or move well, then that's the time to go in.

Other info can be found at Home or Muscular Dystrophy Association

I hope you will give yourself some time to adjust to all of this! Any diagnosis takes time to get used to! If we can help in any other way, please let us know!!!

:grouphug:
Annie

hello
 

I'm new here, but have been dealing with MG for almost a year. Of course, I know it's a year only in retrospect because, yes, it began with my eyes. Blurring, a strange itchy burn and then double vision. I went to a local ophthalmologist who quickly diagnosed me with: sinus infection due to allergy. I struggled with that nonsense for about a month and then saw my long-time optometrist. I had a long-booked trip all over Asia coming up and I was grateful that the optometrist was able to help with glasses and prisms (I had 4 different lens Rx in a 6 week span) and travel went ok. As soon as I returned home, my fine optometrist said that he wasn't sure what it was, but felt it was neurological and sent me to an amazing ophthalmologist. I was with him less than 10 minutes before he asked, "Have you had trouble swallowing?" I had. He said he wouldn't know until blood work results came back, but was confident that I have myasthenia gravis. And there the saga began. In this area, neurologists are really pressed by the onslaught of Baby Boomers and up with Alzheimer's, Parkinsons, ALS . . . The regional university's neurology department had been closed to new patients for quite some time and my fine doc had to work hard to get me into that program. In the meantime, I was seeing a seriously limited neurologist. I recognized him as sub-par the first time I met him because I've worked around doctors and hospitals, once owned a pharmacy, have doctors in my family. The guy didn't run any test, just looked at the blood work results and prescribed Mestinon. I was on that for 4 months before I was finally admitted to the university's neurology department. What a shock to find out how badly I was actually doing! Minimal stress tests, like repeatedly standing from a sitting position, up and down, up and down, left me unable to stand up at all. Light pressure on my forehead made it difficult for me to lift or move my head. I had no idea I'd grown so weakened until then. The docs looked at each other with a kind of knowing expression when I told them that the neurologist I'd been seeing had done no base-line tests and only had me on Mestinon. They all agreed that my MG was advancing quickly,knowing as I did the onset as about one year. I hope this isn't too boring or long, but if so, sorry. I just want anyone dealing with a loser neurologist to find a good one. A teaching hospital is great, if you can get in. And after about a month of remaining on the Mestinon, with prednisone and cellcept added in, I feel slight improvements. I quit drooling. UGH. Yes, drooling from the corners of my mouth. The weakness in my arms is better. I have fast email responses from the doctors and they would take me in quickly if I experience any kind of setback. For now, I'm staying on the medications as they are, have an appointment for further assessment and strength tests in another month (if all goes okay, they'll see me every 3 months, whereas the not great neurologist would have left me to roll downhill with a six month re-check). I hope my droning on has helped someone else.

Hi Arlene

Welcome to NeuroTalk :).

I don't know much about MG so can say little that is helpful

However I am confident that members who have experience of it will be able to offer you support and good ideas.

Best wishes.

Did they do a blood test on what type of MG you have?
Mine is ACHR the most common type started with
Double vision which lasted for 3 weeks before starting to improve,
Had no pain during the symptoms it took the Neurolgist’s 3 months to diagnosis
my mg they were treating as I had a stroke !
I was referred to a specialist on MG in Kansas City Kansas
Then a surgeon which he has removed my thymus gland !
I am getting better still on mestion & steroids
Hope to come off the meds soon!
Take care and listen to your body one day at a time !
Good luck and prayers 🙏
Alton

Here's where I wrote out every trick I've been told and used: https://www.neurotalk.org/myasthenia...-eye-rest.html

In that post I wrote every trick my ophthalmologist has ever known for dealing with double vision and wandering eye(s) (which cause double vision when the muscles tire and one or both eyes can't stay lined up like they should). I have been dealing with double vision for over a decade now--not just up-down, not just side-by-side, but both at once, giving diagonally doubled vision, with one eye rotating as well, so the second image is not only diagonally displaced, but tilting outward as well. You have to try various things and see what works for you, and it may change over time as well.

You need an ophthalomologist who specializes in eye muscle disorders and dysfunctions, not necessarily a neuro-ophthalmologist (I've been referred out to three, two were utterly useless and the third was senile but still riding on a massive reputation from his younger years).

Oh, and Annie, I have been definitively diagnosed with MG by the ophthalmologist. And at my last visit, because in addition to all the double vision/wandering weak eye problems, I now have sigificant ptosis of my right upper lid, and severe sagging of the lower lid, affecting the whole eye itself as well, and when his technician who was recording notes during the visit asked for the diagnosis, he answered, "Poorly controlled myasthenia gravis."
But the eye doctor group is not part of the corporation that owns all the medical doctors' practices in the region, so they won't acknowledge his diagnosis, as they don't talk to outsiders.

Can't wait until I move out of state next summer.