Finding The Right Doc Is A Challenge

Hi. My name is Brad. I am 60 years old. My diagnosis was only a week ago, but this process may have started back in 2020.

Running tests

Back then, I started experiencing "ghost" images... the early, very gradual stages of double vision. This slowly worsened over a period of 3-4 months. I didn't think anything about it at first, because it would come and go. But eventually, it was consistent enough, I thought I should go see my optometrist.

I got the usual round of tests, everything being normal, but when she was finalizing the tests for my script, she wasn't able to get my alignment in range of her machines. It was at this point that she referred me to a Strabismus eye surgeon for further diagnosis. This was in the fall of 2019.

Getting eye surgery

I had my first Strabismus surgery on my left eye in February of 2020. His assessment was Idiopathic Adult Strabismus. I had no symptoms, no accidents or bumps to the head, etc. The first surgery was successful and resolved my double vision, but only for about 4 months.

In June of 2020, I had a second surgery on my right eye. Doc said this was not uncommon, as adjustments don't necessarily work with just one surgery. This surgery was performed and my problems were resolved for nearly a year.

Double vision reappeared

Fast forward to this past fall, and I started having intermittent double vision issues again. I went back to see my surgeon. He diagnosed me as having issues with 'fusion'... the inability of my brain to lock in my vision. The muscles were working okay, but I was still a little off. He prescribed a computer base eye exercise software that I did daily. This actually helped some. Some days were better than others. Some days, there was no doubling at all.

Then during the holidays, right before Christmas, the double vision returned, but this time was a bit different. I also had a very slight droop of the right eyelid. This would come and go. As did the severity of the double vision. Being busy with the holidays, I pushed off really focusing on it, as there was just "too much to do right now" to deal with this.

Getting worse...

Then, at the beginning of January, things changed. The eyelid droop, (which I now know is Ptosis) came back, as did the double vision, but this time, the direction of the misalignment of my site was very different and the Ptosis started to worsen and become more persistent.

It was also at this time that I noticed in the mirror one morning that my face looked different. The right side of my face had a slight droop...my right eyelid was the one drooping. This really got my attention because the first thing I thought of was a stroke.

I immediately booked an appointment with my PCP to start diagnostics: full blood panel, thyroid panel, urinalysis, and upon the doctor's observation of my face, he ordered a head CT.

Seeing a neurologist

Everything came back normal. However, the next steps were determined that I should consult with a neurologist. My wife has been seeing a neurologist so I had my PCP contact his office to set up a new patient appointment.

The neurology practice wanted to do an intake assessment of my reported findings so far and decided that instead of seeing my wife's neurologist, they would pair me up with another doctor in the practice. They got me in right away and started the new patient process.

A diagnosis

The doctor I was paired with immediately knew what was going on: Myasthenia Gravis. He ordered blood work, an EMG, MRA of head and neck, MRI of head, and started me on Pyridostigmine Bromide.

This was on a Thursday and what commenced was a whirlwind of appointments and tests: EMG the next morning, MRI on Saturday, along with blood tests, MRA on that following Monday. I was very appreciative of the prompt attention to my case and the thoroughness of the evaluation.

However, I quickly discovered that I had not seen the whole picture with this doctor.

Unanswered questions

Since the in-person visits, the only contact I have had with his office is when I inquire with questions. I quickly discovered that he is the type of doctor who does not want to be questioned.

As many of you can imagine, I am in a whirlwind, mentally, with all of this. A reasonably healthy 60-year-old, I have been lucky to have not needed medications up to this point in my life. A little overweight, but try to manage it with regular exercise. So I was reeling a bit from the news I had just gotten. So, yes, I am going to have questions.

Not only did he not answer my questions, which by the way, is only available to do via the patient portal, as they don't answer direct phone calls unless it is for appointments, but he was condescending and gave me feedback that had nothing to do with the questions I was posing.

During this time, MRI and MRA results were posted. All kinds of information I didn't understand. So I asked in the portal about some of the result findings. His response was, "Review your scans... no clot." I didn't even ask about a clot??

The following day, my blood tests were posted. Everything was normal except for the AchR binding and blocking results. Both really high out of the normal range. All of this stuff just shows up on their portal, no phone call to explain results... nothing.

Medication issues

I was not having many benefits from the medications, and with no contact regarding the abnormal ACE test, I called back into the office. I wanted to have a discussion of what else could be done, other treatment options...just a conversation.

The response was not a conversation, but a call back from his assistant:
"Up your medication to 4 doses per day"
"Your symptoms may not resolve"
"I will schedule a chest CT"

Moving on...

So... I am done. On to find another neurologist. I am not saying that this doctor hasn't done all the things that most doctors would do. However, something as serious as this deserves more than these types of horrible, one-way, communications.

From all the reading I have been doing, and there is a lot to digest out there, this doesn't sound like an easy process to navigate. Everyone is unique and from the sound of others' experiences, the process with your doctor has to be engaged and detail-focused to give you the best chance of a successful outcome.

I have a new patient appointment with another neurologist in a few weeks who, according to her profile, has a passion for the neuromuscular-focused area of the field. The patient reviews all point to someone that is empathic, engaged, interactive, and informed. I am very hopeful.

What I have learned

From all I am reading, I realized that my condition could be much worse. Did this develop over the last 2 years, with undetected MG resulting in 2 unneeded eye surgeries? Who knows. I had no symptoms back then. But I have a hard time thinking it is a simple coincidence.

So far, this is a droopy right face, Ptosis of the right eye, and diplopia. It improves for a few hours after each dose of the Pyridostigmine Bromide but then returns. So far, no other involvement with the rest of my body, as best I can tell. For this, I am so very grateful.

I am hoping the next steps in this journey find me connected with a forward-thinking, engaged neurologist, who won't take a one size fits all approach.

My advice

The takeaway I would want anyone to have with this is don't turn your power over to a doctor if it doesn't feel right or is not a good fit for you. We know there is no cure for this, but there are a lot of good stories out there and I would attribute that to finding a good match with a competent physician.

Thanks for reading. I am grateful to have found this site. Chronic health issues are not something I thought I would ever face, so it is nice to hear the voices of others going through a similar process.