Myasthenia Gravis with NSCL cancer

[Marian54]

My husband developed double vision, droopy eyes and overall severe weakness . It started suddenly on his week off from chemo and Immunotherapy.

He’s been so weak he’s been unable to have chemo in over four months. He’s on steroids and pyridostigmine 3x a day and the double vision is better but that’s the only change. He’s weakness is is extremely bad and we are both getting very discouraged.

Has anyone had any experience with myasthenia Gravis. They say the immune therapy has attacked his immune system.

[JanetteR57]

A friend of mine has had it for years along with her severe brittle asthma and is frequently on steroids and has to have regular transfusions at a specialist hospital. She does not have cancer. Frequent and regular steroid use also impacts the body's immune system so it's not a given that everyone on chemotherapy will develop something like this nor that those who have it will develop cancer. I know she has some really bad days and cannot get out of bed but on others, once she's had her transfusion, she's much better. She had to give up work as a result of her condition as it's quite unpredictable. There are a number of charities who offer support groups for myasthenia graves so I'd suggest you contact them for specific support and advice on it. good luck and hope you can learn more about it as well as finding more support.

[Lisam81]

Hi,

Does your husband have any other symptoms such as headaches, back pain or anything else unusual? Has it progressed or worsened with time? Has he recently had a brain CT?

All my best to you both!

[Marian54 in reply to Lisam81]

The first thing they did was a brain mri then an ocular mri which were both negative. All his blood test for antibodies were negative as was the first part of the nerve confection study with shocks. They want to do the second part with needles but not until this covid 19 is over. Despite all negative results his neurologist believes he has it. Most do present with droopy eye double vision and weakness in the limbs.

He gets loose stools and has a prolapsed rectum which do far goes back on its own.

During chemo he was riding his bike 4-5 miles a few days per week, went fishing and remained active.

Since getting this he has not left the house .

His last pet scan showed some good improvement. A few tumors were gone and many smaller.

They say when he’s able to restart chemo he will no longer be able to have immunotherapy ever again.

There is very little information out there on MG in cancer patients. I looked for a new doctor for a second opinion but our young doctor seems to have the most experience in both. I only found one support group and no one or any info for someone with both conditions. Any idea would be appreciated.

[Lisam81 in reply to Marian54]

Hi,

I don’t have experience with this myself personally, but I was the caregiver to my dad with stage IV lung cancer in 2018. Your husband is presenting with very similar to almost exact symptoms as my dad had for 4-5 months, but his was more gradual and almost missed symptoms and then sudden. It came on stronger after chemo plus an immunotherapy drug he was taking in a clinical trial was stopped and then worsened. I would strongly inquire/request a lumbar puncture for your husband to test for leptomeningeal. Not because I believe your husband has it, BUT it is something you would definitely want to rule out sooner than later given the symptoms are so similar to myasthenia gravis. It’s also something a lot of doctors don’t go to right away. For peace of mind, request the lumbar puncture and they will look for white blood cells etc in the spinal fluid. More than likely, it will come back fine but my first thought was definitely rule it out now. All my best to you both.

[Marian54 in reply to Lisam81]

Thanks, I will discuss it and do some research. When I read about myasthenia Gravis it seems like he has all the symptoms but he hasn’t improved at all and it’s going on five months. He also so far has not tested positive on any of the diagnostic tests given so far.

Thanks for your reply.

[Lisam81 in reply to Marian54]

The only way to test for leptomeningeal is a lumbar puncture. There is no other way. My dad was normal on every other test. His symptoms were drooping eyelids as well as jaw( when it affected his jaw he could no longer use it to speak normally), double vision, headaches, low back pain, nerve tingling, weakness, lack of coordination when walking to the point where his legs were giving out from under him and he had limited control with walking. Before that he was walking over a mile a day. So as you can see both are similar in symptoms. All tests normal. Doctors didn’t know what was wrong. This went on for months. It was the lumbar puncture only that gave the answer. Given the nature of it, I would request the lumbar puncture sooner than later to rule it out. It very well may be myasthenia gravis but he will definitely want this ruled out. My dad was scared of the lumbar puncture and then said it was a breeze.

Given the fact that he tested negative for antibodies associated with myasthenia gravis I think it’s a good idea to move to a lumbar puncture next to rule out other things with similar symptoms.

Also you said he has a neurologist - is this a neuro-oncologist or a neurologist?

[Marian54 in reply to Lisam81]

She’s a neurologist/oncologist.

[Denzie Moderator Volunteer]

If you are in the US seek a palliative care doctor. (US palliative care allows curative and life prolonging treatments). A palliative care doctor has extra training in managing side effects of treatments and medications. They improve communication between medical specialists and reduce the number of medication errors.

Getting that lumbar puncture should be a priority.