Donna: My Struggle

By CommunityMemberc32a6c

1 min read

I was diagnosed November 2023 but didn’t see a neurologist until April. She put me on prednisone, but it hasn’t helped.

My myasthenia gravis symptoms are debilitating

My eyes are so painful. My left eyelid drops down. Also, my right hand drops everything. I forget because I’m right handed. I can’t walk much as my legs are weak. I’ve got double vision. I can’t stand the lights, so I can’t drive at night. All I get is sweaty because I need to take that tablet 3 times a day.

Chest pains sent me to the hospital

I’m in hospital at the moment. I had pains in my chest so they did an ECG. My heart is okay, I think it’s my thymus gland. I’ve heard when people have had it out, they feel a lot better, but the neurologist said, “See you in 6 months.”

Doctor is unresponsive

She said she will send me for a CT scan. I have not heard anything. I also cannot get hold of her secretary. The phone doesn’t take messages, so I’ll just have to wait. I also started getting bad headaches and a neck ache that goes down on my shoulders, but I hope you are all keeping yourself well.

Donna

xx Myasthenia Gravis

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Sidmo999 Member
Sounds like you need to find a better Neurologist! I spent 17 years with a Neurologist and she pushed Prednisone and Mestinon. Mestinon did not work for me at all. Prednisone works great for me but after 17 years, it has taken its toll on me. A full knee replacement, the other knee needs to be replaced, my hips are going too, steriod cataracts, deteriated vertebrae and ruptured disks in my back. My goal from day one was to find something other than Steriods. My Uncle had MG and took heavy doses of Prednisone and died from an infection. The Neurologist knew what my goals were and she failed me miserably. Never offered new drugs unless I really insisted. So do your research for a Neurologist you can trust. Remember Neurologist have big egos too like any doctor.
Jodi Enders Moderator & Contributor
<inline-mention username="CommunityMemberc32a6c" user-id="9776199"/> Donna, I send my wholehearted compassion that you are currently at the hospital for chest pains. Chest pain can certainly mean the thymus gland, as you mentioned. I would be adamant about calling your doctor or their office to get a CT scan or MRI to check for the presence of a thymoma, as thymomas can be cancerous or non-cancerous. "Up to 15 percent of people with MG will have a thymoma" (<a href='https://myasthenia-gravis.com/thymoma' target='_blank'>https://myasthenia-gravis.com/thymoma</a>). Just a reminder to keep in mind the importance of getting these scans done. It's crucial, especially given your recent experience with bad headaches, which can occur when there's blockage or pressure on the large veins leading to your heart, also known as the vena cava. --- If you are still waiting for a response from your doctor or their secretary in the next day or early next week, consider seeking a second opinion. Myasthenia gravis (MG) can turn potentially serious at times, and it's essential to have a responsive doctor who can promptly coordinate with you and your other healthcare providers. If you reside in the US, I recommend this search tool for MG specialists: <a href='https://myasthenia.org/Living-With-MG/Find-Medical-Experts/fbclid/IwAR15QEvIG-1-RpvDB-nZ5Y8OkGXiQ91HIQD9laIvq9Meo27jSSTqYkISp3Y' target='_blank' rel='noopener noreferrer ugc'>https://myasthenia.org/Living-With-MG/Find-Medical-Experts/fbclid/IwAR15QEvIG-1-RpvDB-nZ5Y8OkGXiQ91HIQD9laIvq9Meo27jSSTqYkISp3Y</a>. --- Typically, it is generally recommended by MG specialists that a thymectomy be done around a year after being diagnosed with MG and once symptoms are managed if you are eligible for surgery. Have you had a chance to learn about thymectomy surgery? --- Is prednisone the only MG treatment you are on? Due to its fast-acting nature, prednisone is usually prescribed as the initial treatment for MG. However, it is intended for short-term use. Once a long-term MG treatment such as an immunosuppressant or biologic takes effect, usually after a few weeks to months, effectively managing symptoms, doctors generally order patients to gradually taper off prednisone: <a href='https://myasthenia-gravis.com/treatment' target='_blank'>https://myasthenia-gravis.com/treatment</a>. --- I'm really sorry to hear that you're still experiencing eye droop, hand and leg weakness, and double vision months into your prednisone use. I think it would be a good idea to talk to your doctor as soon as you hear back from them or consider seeking a second opinion from another doctor to discuss potential treatments to help improve your symptoms. -Jodi, Team Member