MGUS and Myasthenia Gravis - does anyone have both?

Posted by junipergin @juniperjgin, May 6, 2024

Hello Everyone!
I do hope that this finds you as well as can be expected today.
Some of you are dealing with very serious situations!
I wish you well on those journeys.

My own path seems to be full of obstacles such as autoimmune conditions and rheumatological disease as well as infections that can be difficult and even go undiagnosed and untreated for long periods of time. I have sensory peripheral neuropathy and sometimes motor issues with painful hands and feet (no grip and loss of steadiness when painful). The other thing we have added to this list recently is Myasthenia Gravis.

Curiosity always drives me to wonder and investigate; I have seen research about MG following a dx of MGUS. So I am reaching out simply to see if any if you have been dx with both.

Thank you!

(I will be seing a new hematologist as well as a new neurologist in the next couple of months. I want to have as much information, including anecdotal, to help me prepare.)

Thank you!

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Colleen Young, Connect Director | @colleenyoung | May 16, 2024

@junipergin, I think that @ginnycoleman might also have both MGUS and myasthenia gravis. I've added your question to the autoimmune diseases support group as well. It's not uncommon for people to have more than one autoimmune condition. I'll be interested to know what you learn from your upcoming appointments.

flashgo | @flashgo | Dec 17, 2024

@junipergin Yes, I have very similar symptoms to you: MGUS, autonomic neuropathy, and MG. Pyridostigmine has helped a lot, but I've had to gradually increase the dose as the disease progresses.

tracybollinger | @tracybollinger | Dec 18, 2024

I’ve had MGUS detected in 2021 when getting a full Rhuematology work up for usual bilateral joint pain among other non related issues. I progressively got worse which meant more and more specialist. I had a hospital stay in March 2023…husband found me on the floor and talking gibberish when I can regained consciousness. Apparently, I was on the floor overnight for 6 hrs from syncope and hypoxia. Not much of a diagnosis, just sent me home with oxygen. In May 2023, the double vision started…more testing more specialist. I’m on Mestinon now which is helping with my neck, a little bit of the weakness and when timed right, I don’t choke of food. I’m seeing top specialist in Baltimore now, both from Neuro Muscular and Neuro Opthamology…closer than ever to Myasthenia Gravis diagnosis. I have every symptom except positive antibody test. Never knew about Seronegative, so I had crossed off the list 2.5 years ago.

ovationgx2 | @ovationgx2 | Jun 7 9:32pm

My experience.

To begin, I'm a 79 year old male, with MGUS diagnosed (incidentally) in 2016 after a lower back injury. Annual reviews confirm MGUS is stable and no concern.

In Feb 2025 I had an L4-L5 Laminectomy procedure. Six weeks later I experienced Ptosis symptoms followed quickly by Diplopia, and my Opthamologist had me admitted to hospital in May 2025 diagnosing Ocular MG.
Treatment began with increasing doses of Mestinon and Prednisolone then tapering off - as of June 2026 it's only 5mg Prednisolone. From Jan 2026 I'm on Mycophenlate 250mg (2 × 2x).

The Bad part: medication side effects played havoc on my bowels.

The Good part: medication seems to have worked. In June 2026 my Neurologist said I was almost symptom free.

swalex | @swalex | Jun 8 12:19am

In reply to @ovationgx2 "My experience. To begin, I'm a 79 year old male, with MGUS diagnosed (incidentally) in 2016..." + (show)

@ovationgx2

Thanks for sharing. I was wondering whether you've had any side effects from mycophenolate, such as nausea, vomiting, diarrhea, stomach pain, headaches, or tremors.

I ask because mycophenolate is also commonly prescribed for lupus, which is a condition I have as well.

ovationgx2 | @ovationgx2 | Jun 8 4:42am

In reply to @swalex "@ovationgx2 Thanks for sharing. I was wondering whether you've had any side effects from mycophenolate, such..." + (show)

@swalex
And thanks for asking!
I don't have side effects other than: muscle weakness in my R arm (complicated by a dislocated R shoulder in April 2025), occasional nocturnal calf muscle cramps, and weight loss around 5.0Kg since first diagnosis.

ovationgx2 | @ovationgx2 | Jun 8 4:51am

In reply to @swalex "@ovationgx2 Thanks for sharing. I was wondering whether you've had any side effects from mycophenolate, such..." + (show)

@swalex

I should mention my bowel symptoms were quickly and easily resolved by Metamucil (a fibre supplement).

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