[Paul P Ellsworth]

I truly appreciate the responses, but my last reply to this thread (a few days ago) is about 10 to 12 posts up and explains that I found a good Doctor and got a diagnosis and am on a treatment path. Thank you,

Paul

[Paul P Ellsworth]

Time for an update. Please bear with me as this will most likely be a long post.

I had been seeing a Neurologist outside of Lahey that wasn’t exactly sure what to do so he sent me to a Neuro-opthalmolgist, as my newly appointed Neuro at Lahey wanted, too. I saw the Neuro-Optho for a few visits and he noticed that my eyes were looking in slightly different directions, as did one of the Ophthalmologists did at Lahey a few years back. He decided to try prisms in glasses for me which made matters much worse.

During this time I needed to go to primary care for a checkup. I was appointed a new resident doctor who was so thorough that I became his first regular patient. He had some very good suggestions and listened well. He wanted me to go back to see the Neuro at Lahey. I agreed. My Rheumatologist suggested I should see a Neuro that specializes in neuro-muscular problems. As luck would have it, this Neuro is one of two at Lahey that does!

Fast forward to last Friday. I go see her and explain that I couldn’t see the Doctor at Tufts that she recommended as nobody would return my calls. I brought the notes from the other Nuero-Optho that I saw. I also brought my wife with me for support and to mention things that I’d forget. They both noticed that my left eye was different and both eyes were more swollen than normal. She also asked me if I have trouble swallowing (yes) and if my voice gets tired when I speak, also yes, and just two days before, ironically. While she still doesn’t think it’s MG she decided to give me a prescription for Mestinon to see if it makes a difference. Well, it does! The double vision doesn’t go away completely while on Mestinon, but I would say 80% of it does. My eyes are also open much more! My wife thought something was wrong with me as they haven’t been this open in many years. The other thing is that before if I forced my eye to open this much the double vision got worse. I would have to really squint to focus. Now the vision is much better with my eyes open.

While I am very excited to have a good portion of my vision back, the enthusiasm is tempered with the reality of MG. I’m assuming the doctor will diagnose Ocular MG based on the results with Mestinon. Or is that a bad assumption to make? I never realized how awesome the desktop on my Mac looked until yesterday! Sorry, sidetracked there. I already have an autoimmune disease, sero-negative arthritis (enteropathic arthritis, due to UC and then a total colectomy). The doctor did mention that if this worked we would have to work with all my doctors to determine the right mix of meds as I’m already on immunosuppressants – Rinvoq.

At any rate, I’ll take the enthusiasm of being able to see much better! Thoughts?

Paul

[Paul P Ellsworth]

So, it’s March 30th finally and I had my appointment with another Neuro today. I certainly left with mixed feelings. I will start by saying that I worked with a woman who had worked in a doctor’s office for 28 years. She said every Neurologist there had a God complex. I can kind of see that. This new doctor had a bit of an attitude when I mentioned that the Ophthalmologist (surgeon to boot) suggested I speak with a Neuro about MG.

My appointment was supposed to be with a doctor I had seen several years ago to determine the extent of the nerve damage in my limbs due to my spine issues. Well, it was with a different doctor and nowhere on her hospital bio sheet did it say MG. It’s like starting all over again. I explain everything for the umpteenth time to the umpteenth doctor all to hear ” your physical symptoms all look normal”

Yes, of course they do and for two reasons;

1: She’s a small framed female doctor and I’m 6′ 3″ and 246 pounds and a mechanic – when she tries to move my arms and can’t, it doesn’t mean I’m not losing strength.

2 I was there for double-vision issues primarily.

Enough ranting. I don’t want to focus on the negative side. It’s just frustrating starting with a new doctor. I’m sure I’m not telling anyone here something new.

So, the positive;

1: I am scheduled for an EMG for ocular and facial muscles in May.

2: The doctor’s office will set up an appointment for me to see another Neuro-Ophthalmologist, but this one will be at Tuft’s in Boston.

3: She did mention some MG drugs and asked if I had tried them. I said no, but will try anything to help identify and treat this issue.

4: At the appointment I noticed that while my double vision had always been vertical, today it was diagonal. I made sure to drive this point home. Also that when I look up as far as I can I no longer have double vision.

 

The irony of the vision issue is that I recently went back to work for Bausch and Lomb. I’m the lead maintenance mechanic for one of the facilities, where contact lenses start life. This job is much better for my body and health as it’s close to home and probably the best group of people I have ever worked with/for in my 42 years of doing this.

So that’s the “update”. I will continue to focus on the good things and stay healthy by walking at the reservoir behind my house.

 

Paul

[Paul P Ellsworth]

Scott,

 

Your last post really stuck with me. You are right. Why am I waiting to take the long path here?? I have found another Neuro that specializes in MG. Ironically, he is at the Hospital I normally go to AND I saw him in 2018 for my poly-neuropathy. The down side is that my appointment isn’t until March 30th, but at least he is well versed in MG. I could get an appointment with another doctor two weeks sooner, but that one is in the Longwood section of Boston. I’ll wait the two extra weeks and stay in Burlington.

Thank you for your common-sense post, Scott!

 

Paul

[Paul P Ellsworth]

I just got back from my Neuro’s office. We have a plan mapped out.

First is 2.5 mg of prednisone by 10:00 every morning until Christmas to see if it helps my vision. Probably won’t as I am no stranger to prednisone. Heck, I have bottles of it for when my RA flares up. I have never noticed a vision improvement, but the insurance company wants to see the progression, etc…

Second will be an MG drug to see what relief I get with that.

Third is a second opinion with a Neuro-Ophthalmologist at Mass General.

Since it will be a while before I can get an actual appointment, and the insurance company requires a progression of treatment, this works out well. I can’t say enough about my current Neuro. He talks things through and lays them out in easy analogies. I’ve been an Industrial Mechanic for over 40 years so I can be very critical and analytical. This doctor is the right one for me.

 

Paul

[Paul P Ellsworth]

To all, this is all GREAT info. Thank you!

 

I am happy with my current Neuro as he is the one that caught the copper deficiency and is working with me on it. That being said, I am not opposed to finding another doctor if I don’t get the help I need.

Doctors are like any other profession: they all have their Juniors. I’ll explain. I worked for a local company that made resins for all sorts of industries. We had a worker named Junior. Junior was a great guy and meant well. Heck, I even mentored him and tried to push him in the direction of expecting better. But Junior was an underachiever that Murphy (from Murphy’s law) always seemed to find. One example is that he came around the corner in a fork truck too fast. He quickly crashed into the parked fork truck that his friend left there.

So there it is, Junior. Every occupation has it’s Juniors and doctors are no different. I mention this because I have had three ophthalmologists and they have all indicated the same thing – MG. But that one Neuro-Ophthalmologist that I saw over the summer looked into my eyes and declared “you’ve had cataract surgery”! I have not. I don’t even have cataracts. All the optho’s have said I don’t. What I’m getting at is that Neuro-Ophthalmologists are hard to come by in this area and according to her colleagues, this one has a great reputation. She’s a Junior and all it takes is for my doctor to say “but Dr. A says you don’t have MG”. That’s my fear. I know I should give him more credit, but experience and all that….

I do trust my Neuro and believe that he will help me get to the bottom of this. But I’m also a realist and ready to move to another Neuro if need be. As mentioned, I need to be my own advocate. I learned that lesson so long ago, but it does bear repeating so thank you for that 🙂

 

Paul

[Paul P Ellsworth]

I have an update. It’s good news, good news, bad news.

 

Good news #1: I found a great Neuro local to me. He’s actually the doctor that diagnosed my sister with MS over 40 years ago. Not planned, but big co-incidence!

Good news #2: He explained everything in terms I can understand. Most importantly he explained how the MG test was done and I don’t have it!

Bad news: I am severely copper deficient. This is very rare so treatment is going to be different, to say the least. it was right there in my blood test results like a big fat meatball, yet neither my old Neuro, nor my old PCP, noticed it.

 

I am happy to find what the problem is. It takes a lot of stress off of me. Now the long road of figuring out how to correct it. There are a lot of similarities in symptoms between this and MG. The double vision is a separate issue we need to address, but I’m confident that this Neurologist of over 55 years in practice will see it through (pun intended!)

 

Thank you everyone for you support!

 

Paul

[Paul P Ellsworth]

I have an appointment with a new Neuro on Tuesday! Also, the muscles around my eyes have been twitching for several months and getting worse. Is this part of MG? It’s also important to note that the symptoms for MG and thyroid issues are similar. I mention this because my mother had her thyroid removed in the early 1970s. I am seeing an Endocrinologist in October as they have been filling my prescription for testosterone.

 

Paul

[Paul P Ellsworth]

Thank you for the input, Tom and Michelle!

 

Tom, I go to Lahey, which has merged with Beth Israel. I am trying to stay outside of the BILH world for the rest of my journey on this, after my brain MRI in two hours. I have found a new PCP and identified a good Neuro local to me that I will reach out to. My first task is today’s MRI. My second is a visit with the new PCP and get her thoughts. Then the new Neuro. At the same time I am seeing an Endocrinologist for my hormone treatment and I will ask to have my thyroid tested as a lot of the symptoms are similar between thyroid and MG. Also, my mother had her thyroid removed back in the early 70’s.

 

Edit: I have noticed that I feel worse in the heat. For example, my legs turn to jello quickly when I walk, but today and Thursday were cool and walking wasn’t bad at all until near the end of my walk. Similarly, I was in a hot room at work the other day standing and wanted to pass out I was so light headed.

 

I appreciate all the support very much!!! One last question; I have read that if you have the antibodies in your blood then you are positive for MG. The amount doesn’t dictate the severity. Is this true?

 

Happy Saturday everyone!

Paul

[Paul P Ellsworth]

Good info Scott! I’m just outside of Boston so there are a lot of good hospitals. I have a brain MRI scheduled this Saturday. I think my first step is a new PCP. When I messaged my current PCP about depression he told me to go to psychologytoday.com and look for a doctor. Not an acceptable response. Once I do switch PCPs I will find a new Neuro. I am also going to reach out to my old PCP, whom I trust, and ask if he can recommend a PCP and Neuro.

 

I do have a lot going on. I have a total colectomy, lumbar spinal fusion and total knee replacement. Well, off to work!

 

Paul

[Paul P Ellsworth]

I would also like to add some other things for context.

 

I have been experiencing hand tremors. They are worse when I hold a pen or mug, but stop if I squeeze my muscles. I get inner tremors through my whole upper body where it feels as though I’m shivering, but I’m not.

 

My PCP was supposed to refer me to a cardiologist as I get light headed often and when I sleep on my side my heart is beating as fast as it can possibly go, so much so that my body feels like it’s vibrating. The PCP wanted to get the other issue figured out before he sends me to a cardiologist. At this point I’m giving serious thought to seeing my old PCP whom moved to New Hampshire (I’m in Massachusetts). I am also going to speak with the Endocrinologist and Rheumatologist when I see each of them next month.

 

Paul

[Paul P Ellsworth]

Thank you for the tip, Wayne! My Rheumatologist had me on prednisone for over a year about five years ago, but it was only around 5mg daily. I will add some collagen to my diet. I believe I have powdered bone broth that I intended to use in recipes……

Paul

[Paul P Ellsworth]

Thank you for the explanation, Anita! I have had several EMGs in the past due to spinal issues. Could you explain in more detail about how they perform this test for the ocular and facial muscles? The Neuro told me it will hurt and I don’t doubt that.

 

One thing I have been noticing lately is that my double vision is most of the time, but different at times. For example, it used to be vertical only. Last week at the doctor’s office I noticed that the image in the right eye was now up and to the left. Today it was down and to the right. When eye look up as far as I can with just my eyes, there’s no double vision. Same as to the far left and right.

 

Paul

[Paul P Ellsworth]

I appreciate the advice George! I am currently seeing a Neuro that has been in practice for over 55 years. He treated one of my sisters in a car wreck in ’78 and his partner treated my sister with MS. This is the Neuro that noticed my copper deficiency while the one at the local hospital, who actually asked for the test, ignored it.

That being said, I am fully prepared to move to another doctor if I feel I am not being diagnosed properly. The Ophthalmologist all but diagnosed me. Without saying I have MG, she said I have MG. I’ve been going down this path for far too long to not have a plan in place. My vision is getting progressively worse and I won’t tolerate a doctor that won’t work with me or value me.

 

Paul

[Paul P Ellsworth]

Thanks, Scott!

Your post definitely helps me to feel a bit better. Most of the time I feel like the problem is me because nobody understand, except my sister with MS. My wife is very supportive, but sometimes I feel as though I’m alone in this “journey” Not a negative reflection of her, it’s just that we’ve been through so much together with my health over the years. Hearing the reassurance of people that are in, or have gone through, the same thing is validation of sorts. Even though I am not getting my thoughts out as precisely as I would like, I believe you understand what I mean 🙂

 

Paul

[Paul P Ellsworth]

Well, not so good, David. I have seen a new Doctor in the Endocrinology department. He had some lab work done on me and I’m deficient in Vitamin D and testosterone, even though I have been taking both. So far I have added chelated copper (copper deficiency), vitamin D twice a day, testosterone twice a day and thyroid support supplement twice a day. I also get B12 shots monthly due to malabsorption issue from no colon.

I do feel a bit better, but still have tremors when excited, anxious or stressed. For example, I lose some muscle control in my hand/arm while playing Mahjong and trying to beat the computer. I also lose it when I cook and add spices, sometimes my hand just shakes uncontrollably and I over-season. I still get the internal tremors where I feel like I’m shivering, but I’m not cold. My vision is getting worse, too. Blurry and double vision. I had an appointment last week with one of the top ophthalmologists at Lahey. I told her about the double vision and that I can make the images move around by rotating my head. Also that if I look all the way up with my eyes only that the double vision goes away. She asked me if I have trouble swallowing, which I do about once a week. She asked if I get shortness of breath and I told her I do, and ironically I had lost my breath just sitting at my desk that very day. She then told me to go back to my preferred Neurologist and have another discussion about MG.

This is the third doctor that has brought up MG. I am going to see the Neuro on December 5th. At this point, I just want a solution and to plan a path going forward. The malabsorption issues tend to muddy the diagnosis. I was happy to get the diagnosis on copper deficiency as that would have meant I could move forward with life. This last doctor telling me to re-open this possibility with the Neuro was a bit of a punch in the gut.

I am no stranger to the emotional roller coaster of health issues as I went through it for many years with my spine and then again with 13 surgeries for my intestines, including a total colectomy. It just doesn’t get any easier going on that ride.  I think one of the main reasons I’m feeling somewhat better is that the summer heat is gone.

Thank you all for your support in this. It means a lot to me to be able to communicate with others that get what I’m experiencing.

 

Paul

[Paul P Ellsworth]

David,

 

I may go see my sister’s Neurologist. She’s been treating her MS for decades. If she’s not in my Insurance carrier list I will see another local Doctor that is in the plan, but not in the same hospital.