[Michelle]

I did have a thymoma which just “happened” to be found on a chest x-ray during a visit to the ER for MG symptoms.

I had been diagnosed with MG about a year earlier. I asked my neurologist if we should look to see if there was a thymoma, she replied that it would not be necessary as they were very rare.

I began developing severe MG symptoms and went to the ER having difficulty walking, seeing and having spasms in my arms. That is when the chest x-ray was done, although it wasn’t because of the MG. It was simply the routine followed for anyone at the ER potentially have a stroke.

I was also told at one point that thymectomy should not be done for someone 60 or older. I was 61.

Once the thymoma was found, I underwent all of the examination and preparation for surgery and had a thymectomy within 4 months.

Since that time, my symptoms were reduced to only ocular myasthenia which has also subsided and I am now symptom free.

[Michelle]

Paul,

I am not a doctor,  but I’ve done enough research about MG that it sounds to me like you have many of the symptoms.

I began having symptoms in late 2020. It took me a year to find a good doctor. I happened to have a chest x-ray and it showed a nodule in the center chest area. It turned out that it was a thymoma which is one thing that can cause MG.

I hope that you will keep searching to find the right neurologist for you. It may take many, many tries, but when you find the right one, like I did, I believe you will just know it. You will feel heard and taken seriously. The feeling when I found the right doctors was really pronounced!

My best wishes to you on your journey!

[Michelle]

Hi Amy,

Your experience could definitely be typical. I have both central and obstructive sleep apnea and when I had my sleep studies it was extremely difficult to sleep and deal with the mask and the different pressures of the air.

After you are diagnosed, a respiratory therapist will help you to choose the right mask and the right fit for you so that you can sleep more comfortably. Once you have your own CPAP, biPap, or VPAP machine, there is a ramp up setting that allows the air pressure to increase gradually so that it isn’t full blast until you are asleep. I find that very helpful.

It does take time, days/weeks, to get used to sleeping with the mask, but if you need it, it’s completely worth it. I had around 50 events per hour (event is times that breathing stops) and with the VPAP, it is reduced to 1-3 per hour. I feel much more rested than I used to when I get up in the morning.

I hope this helps your decision. Let me know if I can answer any other quetions!

Michelle

[Michelle]

My neurologist had me on 240 mg mestinon up to 4 times a day. Eventually I suffered with extreme side effects as the mestinon was toxic . My neurologist just didn’t have the knowledge or experience.

I have since found a neuromuscular disease specialist that knows so much more!

i would suggest that you look at teaching hospitals to find one. My insurance did not cover it until after an appeal because the dr is the only one in my state.

We have to be our own best advocates!!

[Michelle]

Victory!

After over a year of trying to find treatment and doctors, I found them! I had a chest x-ray that showed a mass. The doctor that did that sent me to a cancer specialist and I did a chest CT which showed the mass on my thymus and masses on both adrenal glands and thyroid nodules.

The cancer specialist was amazing! He has set me up with a neuromuscular specialist, a neuro ophthalmologist, and I found an endocrinologist for the thyroid and adrenal masses.

I am scheduled to have a robotic thymectomy on May 25th. Seems a little strange to be excited about surgery, but I’m so excited that progress is being made!

 

[Michelle]

Lisa,

I can completely relate to what you are going through!

Although I have only been diagnosed with MG for about 1.5 years, I have struggled with finding doctors who understand MG, much less understand the frustration that is causes the patient.

My neurologist refused to order bloodwork to determine if I had MG. I had to request the tests from my primary care doctor!! She said that we couldn’t test for everything because we just don’t have that much blood!

I had an MG crisis in January and went to the ER. They kept me waiting for 11 hours and kept ordering tests. They wouldn’t tell me why they wanted the tests and wouldn’t allow me to speak to a dr. It turned out that they could not reach a neurologist (at the hospital?) for all that time.

My approach has been to learn as much as possible about MG and to try to get into many national clinics (Mayo, Cleveland, etc) and try to see as many neurologists in my state that I can. I spend the morning of most week days making phone calls and follow up phone calls.

My persistence has paid off. At the ER, they took a chest x-ray which showed a mass in my chest. After seeing another neurologist, she sent me to pulmonary about the mass who sent me to our teaching hospital to see a neurology disease specialist. He believes that it is my thymus and know immediately the connection with MG and has sent me to follow up doctors for surgery and care.

The frustrations are real and the resources to help us are very rare. My advise would be to keep trying doctors and clinics until you find that “angel” that has the knowledge and sympathy to give you the care that you need.

I was diagnosed with sleep apnea and use a cpap. I have often wondered if the breathing issue is related to muscle weakness (MG) and breathing muscles. Do the sleep study! Anything that makes you better is worth it even if it isn’t directly connected to MG.

In the meantime, know that you are not alone in this. This is a wonderful community where you can connect with others who are struggling. Keep the faith and keep fighting for the right doctors to take care of your health.

My best to you,

Michelle

 

[Michelle]

What perfect timing!

What is weighing heavy on my heart is that I have been working for four months now trying to get into one of the bigger clinics to get help with my MG and it is so difficult. In NM there are very few neurologists and those there are have very little experience with MG.

I have also just had a CT scan that showed a tumor on my thyroid and another in the area between my lungs. It has been very difficult to get scheduled to have the recommended biopsies. One doctor will only refer to a thoracic cancer surgeon. I have to have my primary care doctor refer me to an endocrinologist and I haven’t been able to speak to anyone to request it for over 2 weeks. I am frustrated that the medical system doesn’t work and I have to set up reminders for myself to follow up on each call every 2 to 3 days.

Good news: I heard from Cleveland Clinic yesterday to schedule an appointment for late April!

I appreciate the opportunity to unburden some of this to my fellow MG friends.

Michelle

[Michelle]

I do have diplopia, more severe in one eye than the other and double/blurry vision over 50% of the time.

The thing that helps me the most, although much less than ideal, is to hold my eye open while driving. I was on up to 800 mg of Mestinon a day and that did not even help with my vision.

I had an MG crisis and my meds were changed to 50 mg of Azathioprine with 60 mg of Mestinon up to 4 times a day. This has dramatically helped my generalized MG symptoms of weakness in arms and hands and fatigue, however, the problem with my diplopia and vision has not improved at all.

My opthalmologist has suggested a short course of prednisone, but my neurologist has refused to give this a try. I am in search of an appointment with a clinic (Mayo, Cleveland, etc.) for better help with my MG with doctors who have more experience and knowledge of the symptoms and treatmenst.

My very best to you in your search for help with your vision!

[Michelle]

My first symptom was a drooping eyelid and the concern was a potential stroke, so they sent me to ER and after several tests they determined that it was not life threatening. At that time I didn’t have any other weakness.

I went to ophthalmologist a few weeks later and that was when I was diagnosed. I was happy to have it diagnosed quickly, but there is no dr where I live that specializes in MG.

I’m currently trying to get into Mayo, Barrow Neurological Institute or Cleveland Clinic. Hopefully, it will be soon!

[Michelle]

That seems to be the case.

Was your neurologist hesitant to put you on prednisone?

What has been your experience with it? Have the benefits outweighed the side effects for you?

Thanks,

Michelle

[Michelle]

Sharon,

Thank you so much for your feedback! I have also ordered a variety pack of Lids by Design. I am so hopeful that they are going to be just what I’ve been looking for!

Thank you, Michelle

[Michelle]

Douglas,

Thank you for your reply and sharing your experience with me.

It is so helpful to know that others share your experience and can relate. It isn’t “in my head.”!

So far, the neurologists I have seen are helpful. One wouldn’t answer any of my questions and the other is very condescending. She told me, that we all have one eye that’s a little droopier than the other! I wonder if we all have double vision sometimes?

My primary is very helpful and I think would guide my care, but thinks that Mayo Clinic is a good place to begin.

Best wishes to you!

Michelle

[Michelle]

Thank you so much for the information.

I am currently completing the initial questionnaire for Mayo to begin with a general exam.

I am so glad to know of your experience and that the neurologist looked at other ares of concern.

Did they do testing for your thymus?

Which Mayo did you go to?

Thanks so much and best of luck to you,

Michelle

 

[Michelle]

Hi Matt,

Thank you for your reply!

I appreciate the great information.

I just saw Upneeq advertised and wondered about it. Glad to hear from someone who has tried it.

Does using the eye patach at other times help your visio?

Thanks, Michelle

[Michelle]

Thank you, Deborah!

I appreciate your feedback.

I’m bad about taking breaks, so I need to actually set reminders for myself.

I will try the eye drops, too.

I have never heard of CellCept or been on prednisone. I have only used pyridostigmine.

Your additional information has been very helpful to me.

Thanks,

Michelle

[Michelle]

Thank you, Raymond!

I too have double vision off and on and know the head lifting and lowering trick well! Definitely not elegant!

I love your sense of humor – individual results may vary!

My best wishes for you,

Michelle

[Michelle]

Hi Mike,

Thank you for your reply!

I am still holding my eye open while driving and it is very old! I’ve been dealing with this for a year now and you’re right! It is very old.

I am going to try the scotch tape method right away! Hopefully, it will give me more freedom to drive, etc!

Best of luck to you in your new journey with MG.

Michelle

[Michelle]

Thank you, Rick.

[Michelle]

Thank you, Theresa.

[Michelle]

Thank you, John.

[Michelle]

Thank you, Charles.