I have Ocular MG. You are right. Strange weakness is real and RELATED to MG. I have the same thing. Diagnosed in Dec 2016. How can a doctor tell you that it is not related to MG??? It is.

Mine started as Ocular MG , and progressed to generalized very quickly . So have your Neurologist check your reflexes at each visit .

Fatigue is a symptom of MG, so I'd disagree with your Neurologist

Update! Only a few years later! After seeing more specialists who’ve dismissed me by telling me my MG is not getting worse, my fatigue and migraines and MG are not connected together even though they started within 2 months of one another, told me I was depressed (after telling them I’ve been through a major depression so I know the difference) and started treating me like I have narcolepsy -all after being rejected by the Mayo Clinic because I have ‘great care’ and they can’t do more for me - I’ve finally found a doctor who has started treating me correctly. And just by simply changing the dose and time in which I take my mestinon, and acknowledging that these things are connected, I’m feeling hopeful for the first time since 2015. I appreciate the posts of encouragement!!

It is probably time for a discussion of the ocular, bulbar and general MG types distinctions and the nonsense that too often comes with these classifications. They are all one and the same Myasthenia Gravis -- an ongoing antibody attack on our whole body, with the most sensitive areas often being in the eyes and next the head.

So we go to the doctor complaining about our eyes, get some tests and get diagnosed with MG and as we complained about our eyes (pretty damn striking when your eyelid slams shut and you see two of everything) and the doctor says "you have ocular MG."

If we have antibodies enough in our bloodstream to attack and mess up our eyes, we can be sure they are attacking all of our neuromuscular junctions and messing them up too. However if the antibody level is low, maybe only our eyes are noticeably affected -- the most sensitive to damage.

When you have MG, those antibodies are not aiming themselves to just attack eye muscles -- they are doing it all over and you are definitely having damage done whether or not you clearly notice it.

Don't let your doctor pigeonhole you into a classification of ocular or bulbar. Ask her -- do you think my bad antibodies are smart enough just to attack the neuromuscular junctions in my eyes when they are coursing through my whole body?

I worked in medical research most of my life and found that a great deal of the classifications of disease stages are meant for the physician's convenience rather than for a clear understanding of how things work. And the classifications of ocular vs general is mostly based on your own reported symptoms, based on what you both actually noticed when you first talked to her.

My own MG went from ocular, bulbar, to general in a month based on the symptoms I reported (starting with double vision, ptosis and soon to breathing support in the hospital). My initial diagnosis of ocular MG badly got in the way of getting sufficient and early treatment for MG.

I had MG. Period. Don't let those doctors say - you just have ocular so we won't treat for general or won't give you more Mestinon, like mine did.

Way too much BS in these classifications and thus limited treatments that get in the way of what needs to be done!!

Good Luck
Russ

I supposedly have just ocular but I have trouble swallowing . Had it for years. They say reflux which I think is wrong. I also had vocal cord spasms a few times which are very scary. . All my nerve conduction tests are completely normal . They say it’s very rare to have isolated weakness like just swallowing. So they make me feel like I’m crazy. I’m sick of it. I eat a soft diet and go on with my life but would I love to be able to eat what I want. Wearing a face mask now with pandemic is hard for me too. My eyes are “normal” no drooping but have potent glasses due to blurry vision. Looking down is wavy vision too.. I feel like my classification is incorrect but try to reason with know it all doctors and neurologists is impossible.

db5919 - If only things were simple. Unfortunately there is no way of measuring the severity of MG or indeed the efficacy of the treatment we get and even less so the competence of the Neurologist we find ourselves in the care of. As Russ says, just about all of us start off with our eye(s) closing with the result that the first visit to hospital is invariably to the ophthalmologists. If they are any good they will recognise the possibility of MG and arrange an appointment accordingly. After that who knows how quickly it will progress from just the eyes. I would suggest no one does, but a good Neurologist, experienced in MG, will make sure that you're not fast tracked by the disease, if you are then I suspect as I was it's hospital admission and all that goes with it.

Some of us do indeed seem to settle for, I guess, a relatively mild experience of MG whereas other are seriously impacted by it for the rest of their lives.

You're not the first to suffer from a dubious diagnosis and I doubt the last, it's far too complicated when on the fringes of what is expected and there are so many other things that can distract the medical profession along the way.

I wish you luck, but make sure you don't get left behind here - start to keep a record of what is happening to you and take it with you, that might just help the Neurologist inform his/her opinions?

PeterL

Thank you to PeterL for some good advice to record all that is happening with one's recent symptoms.
They say that we who have MG are "snowflakes"-how true! The only time I had lid drooping was when I was entering into a crisis mode. I was diagnosed in 2013, my only symptoms at that time were impaired speech and trouble swallowing, things that have continued all along this journey but to differing levels.
Spent most of February in the hospital in crisis, progressed to pneumonia, then intubation in ICU for 5 days. Scary! My lung doc rescued me from that mess. Before intubation, neurologist tried IVIG but I was too sick for it to work effectively. Then had plasma pharesis (sp) while in ICU and after release from ICU. Was released from the hospital then the Covid 19 mess hit. I am currently on monthly IVIG treatments to get me stabilized then will start taking an immune-suppressant. I had been doing well before this crisis in February, my first!
I see now while reading this blog that there are other options out there to maintain a close-to-normal lifestyle. My neurologist always told me during check-ups, "Oh, you're doing well". Yes, I am doing well on just Mestinon, until I end up in crisis. Never once did he inform me that there were other options for management of this horrible disease.

Just a few thoughts.

Robin23

Robin23 - Slurred speech was another of my initial indicators of things not being right with me, not actually sure which came first, the speech or the droopy eye. As for Mestinon, I appreciate that it can help relieve the symptoms, but it in no way does anything to stop the progression of the disease. For many. perhaps most of us, we're lucky and we meet the right Neurologist and whilst the first year can be very tough, together we find a treatment that works for us and from then on life becomes fairly normal once more. The sooner you are able to start the process of combating the antibodies the better I'm sure. IvIg is little more than Mestinon really, just temporary relief albeit usually for a number of weeks rather than hours.

Take care

PeterL