Myasthenia gravis - can it come back?

Hi @pmci, allow me to tag fellow MG members @skhollandmt @rambo77 @Erinmfs @ellen307 @pdietrich @lynnes @chorba @janyce who can share their experiences with Myasthenia Gravis.

You may also be interested in this related discussion:
– Myasthenia Gravis: Share your treatment journey https://connect.mayoclinic.org/discussion/hi-everyone-let-me-begin-by-telling-you-some-of-my-story/

- Double Vision and Autoimmune Diseases like MG: Can anyone relate? https://connect.mayoclinic.org/discussion/double-vison/

I was diagnosed with MG at 21 and am now 69. For decades I had very serious difficulty walking, chewing, keeping my eyelids up, double vision etc. But in 2017 I realised that I had no symptoms even when I forgot to take Mestinon (by then 30mg per day). Seemed incredible. I still have no symptoms of MG, although I currently take Mestinon each day after a suggestion that the symptoms could recur. (I don’t know how reliable that info was though.) The weird thing is that my blood still shows a level of 5.5 anti-receptor antibodies of acetylcholine. A positive result is 0.40. Is this disappearance of symptoms unusual? Has anyone else had this experience? Does anyone know if the symptoms are likely to come back?

I was diagnosed with Myasthenia Gravis (MG) at age 75. Looking back, I did have many of the 6 major MG symptoms for several years but thought they were old age. When my speech would seriously slur after a couple sentences, I knew that was NOT just old age. I was admitted to a hospital and after several days of nearly 24 hr testings, I was given the Tensilon test. As soon as my voice started to slur, I was given a medication through an IV. Within seconds, I could speak clearly and read through an entire page of text. The hospital neurologist smiled and said you have Myasthenia Gravis (MG). He followed up the the ACHr antibody test which over 25 is positive for MG. Mine was 49! It is now over 7 years since MG diagnosis. It took me TWO years to find a neurologist who actually knew how to treat MG! I originally was only on Mestinon (generic pyridostigmine). I had horrible side effects from Mestinon! After nearly 5 months of exacerbation, I was put on IVig therapy which stabilized my MG. After I finally found the neurologist who knew MG, I was put on Imuran (generic azathioprine) and my MG has been stable since which is great. I am doing well at nearly 83 yrs old let alone having MG as well!
Would like to see Myasthenia Gravis file under the auto-immune diseases. The general public, and sadly most medical professionals are totally clueless about MG! They do NOT know MG symptoms many never heard of MG. Although there was no name for MG, MG symptoms were first recorded in the US in the late 1600s. That's during FIVE centuries and MG is still not considered when the MG symptoms are quite evident! It is sad that MG awareness is no longer learned!
MG can be specifically diagnosed IF medical professionals would know the 6 MG symptoms!

@kay56 Hello again, Kay. I seem to see you everywhere! You know, you can start a discussion focused on MS. Just make sure it’s not like the current ones so we don’t have duplicates of information. Maybe run it past me first.
Studies show that doctors may have learned about AD in school, but it’s all coming so fast today that they can’t keep up. And, it’s very specialized. Community-based doctors usually don’t know about the more complicated ones. We have to help them learn when we can.

My focus is MG (Myasthenia Gravis) not MS. MG is seemingly disregarded and often said as MS. As I said in my reply just minutes ago (Thursday, 9-14 around 5:15 to 5:20 p.m. CDT). MG is NOT new, symptoms mentioned in the US in the late 1600s although not named at that time. It is NOT new! During FIVE CENTURIES it has been documented and should NOT be disregarded for all newer conditions. Medical professionals should deal with KNOWN Documented auto-immune diseases and rectitfy them before going on to NEWLY discovered conditions the frequency of which is not yet even known. MG has NOT been accurately represented NOR its occurrence accurately reported during these five centuries.

@kay56 I’m so sorry! That was my big mistake in confusing MG and MS!

That's what I mean about MG being so disregarded. Even one of my support group member's daughter took her father to the hospital in MG crisis. She was very upset and told ER that her Dad had MS.

@kay56 I didn’t confuse the diseases, I confused the initials when typing! But I can see what happens when things are spoken/written incorrectly

Myasthenia Gravis (MG) is NOT hard to diagnose if a medical professional is MG literate! Some ophthalmologists and optometrists have suspected MG, and recommended seeing a neurologist, if a patient has droopy eyelids and/or double and/or blurred vision but eye tests reveal no malady.
There are 6 significant symptoms for MG. For most people, all 6 symptoms may not be evident at MG onset. Most with MG will start with one symptom, then if not diagnosed and given correct treatment, will likely experience additional symptom(s) as gMG (genralized Myasthenia Gravis) progresses. Myasthenia Gravis Symptoms: blurred and/or double vision, droop eyelid(s), limited facial expressions (looks like a sneer), inability to hold up head and/or have weakness in weakness in neck, arms & legs, chocking & difficulty swallowing and, usually but not always the last, is slurred speech. I have done extensive MG research from only the most reputable sites. I have gathered LOTS of information that I gladly share with the MG support group I started in 2018 and anyone wanting to be MG educated. Even if you may not have any of these symptoms, you probably know or have seen someone with them!!

Here is my story with gMG in hopes that some readers might find it helpful. I am an 83 year old male. Six years ago during a routine eye exam in Arizona, the optometrist noticed that I had a slightly droopy left eyelid. He immediately sent me to their company's in house neuro-ophthalmologist, who (after a blood test) diagnosed my situation as Ocular MG. I was, of course, very fortunate that the company had both medical professionals on their staff, resulting in a very early, correct, diagnosis. I was immediately prescribed a daily dose of 60 mg of Pyridostigmine (Mestinon). But within a few weeks, I was experiencing all six typical generalized MG symptoms. Again, I was fortunate in that while all were definitely making their presence fully known, the symptoms were not debilitating in my case. The neuro-ophthalmologist then sent me to a neurologist colleague whose specialties include MG. She almost immediately prescribed 10 mg of Prednisone per day. On my own, I then started a daily regimen of very low intensity weight lifting, which I continue today and firmly believe contributed to improvements in my gMG related condition. After a few weeks I noticed marked improvement in that my gMG symptoms gradually and markedly declined in severity, but did not disappear altogether. Now, over the course of the past 5+ years, the neurologist has gradually reduced my daily intake of Prednisone down to a current 2.5 mg daily. Additionally, very recently, with the goal of eventually getting me off Predisone altogether, she started me also on 100 mg daily of the "steroid sparing" drug, Azathioprine. Both drugs have their associated risks, but in my case the combination seems to be working well. Currently I have almost lost the original six gMG symptoms, but now experience what I consider to be mild weakness of my leg muscles. I have read that long term (several years of) gMG can can move to the arms and/or legs. But, most importantly, I have returned to a fully normal life. I have no idea if the above approach might help others with gMG, but I'm thinking it doesn't hurt to tell you of my quite positive experience (at least so far !). A sincere suggestion: if your doctor approves, follow up on my program of very low intensity, daily weight lifting, including gradually using heavier weights if your body is telling you that you can do more. I believe that program has helped me a very great deal. At a minimum it gives you a new fighting mental spirit that you will not just lie down before this nasty disease. P.S. I did some reading before beginning the weight lifting. The literature on gMG does not discourage mild exercise if you find that you can handle it well.