Ocular to Generalized Myasthenia Gravis
Commonly, the first symptoms of Myasthenia gravis experienced, and possibly the only MG symptoms for years, are double vision or drooping of the eyes, referred to as ocular MG, https://myasthenia-gravis.com/ocular.
However, Ocular MG can progress into generalized MG, which is noted by weakening muscles other than the eyes, https://myasthenia-gravis.com/generalized.
Did you have ocular MG that advanced into generalized? What were the first things that made you notice this was occurring?
I started getting occular symptoms at around age 17 in the form of ptosis (I'm in my 30's) now. I started getting generalised symptoms within two years however they were subtle, fatigue and early fatiguability in my upper limb muscles and neck and arm weakness. I suspect I had other symptoms in my facial muscles but as it was quite slow and I was repeatedly told I was anxious/depressed and that nothing was wrong and consequently ignored. So I just kept telling myself I was lazy or a hypochondriac for like 15 years. I had multiple flare ups which looking back were potentially crises as I struggled with breathing and my HR would increase to compensate. Again drs put down to mental health. The most recent big flare in 2021 left me with significant weakness that bringing my fork to my face while eating was very difficult, slurred speech, double vision, facial droop and continued breathing difficulties. Sadly this was also put down to anxiety and stress. I sought out a private Dr as in the UK and she provisionally diagnosed me in 2022 and requested bloods etc. some of my symptoms have improved with pyridostigmine. Whilst the ptosis was there was the start it did not impact my vision too greatly , it was the increase in ptosis and double vision when it obscured my vision that really made me notice things were not right.
I am so sorry to hear about your gaslighting experience with what sounds like multiple doctors. Sending you much compassion that you had to endure the mental and physical consequences of the faults of others. You always share such valuable information on our site. We have a page here, https://myasthenia-gravis.com/stories/new, where we welcome our community to share their stories for the benefit of others to have direct sources where they can gain knowledge from the experiences of others. If you are open to it and find the time, we think many individuals would gain a lot from reading a summary of your MG journey 😀
-Jodi, Team Member
I was diagnosed with OMG last January then needed surgery in November. This seemed to trigger a slow decline over a number of weeks. I ended up in the hospital with Myasthenia exacerbation. Now I'm being treated for Generalized Myasthenia
We are so sorry to hear this was your experience. We are sending our uttermost compassion your way! We appreciate you sharing. Are you seeing any improvement with your new treatment for generalized MG, or have you recently started with those treatments?
-Jodi, Team Member
Thanks, everyone. Has anyone sensed that the neurologists you've seen are reluctant or have even told you they will not diagnosis MG when genetic testing is negative?
Jodi, Meneire's was diagnosed by an audiologist in 1990. At the time, I had vertigo and tinnitus. I lived in Columbus, OH and later Grand Forks, ND. Since moving to the Santa Barbara area in 1996, the vertigo is greatly diminished. The tinnitus is still there. The diplopia was diagnosed in 2005.A lot of doctors dismiss MG after negative blood tests. However, they often are unaware of seronegative MG, which is relatively common, https://myasthenia-gravis.com/living/seronegative-challenges. Seronegative MG, if you are unfamiliar, is when blood tests come back negative, but an individual does have MG. Often, in this case, an MG diagnosis is confirmed using mestinon. Mestinon will not work for everyone with MG, which can be why a diagnosis is crossed off. But typically, the mestinon will improve the MG symptoms temporarily, and mestinon only will affect an individual if they do indeed have MG. This is a popular ongoing discussion where many individuals have shared their experiences of having MG symptoms ignored by doctors or passed on as something else. https://myasthenia-gravis.com/forums/gaslighting
- Jodi, Team Member
I started with a falling head and voice loss. When my MG came out of remission I now have a (slightly) Ptosis in one eye and swallowing and coughing as well as the falling head and double vision and fatique ... yet, at 74 fatigue could be(in part) my age and prior to the remerging I had lens replacements (cataract surgery) which is likely a different story but some reading issues that I should not have but do.
