Christine

Hi Elroy, (warning signs of MG)

You ask if I had any “warnings” before all that started, and it feels I did not! But in hindsight, now I can see a few signs.  FYI, I heard back from Marianne right away, it helped her to read my story (below), and I also checked on her today. She seems to be doing a bit better and actually was able to go back to work today. I told her to take it easy!

For a whole year before my 1st visit to the ER, I had had this strange feeling in my throat, like a “lump in my throat”, and also I could not sustain my voice when singing. And if I talked too long, I had a bit of a difficult time swallowing my saliva, and again the feeling of “something stuck in my throat”. But it was difficult to describe to a doctor and it made me feel hypochondriac. My ENT simply told me that I probably had reflux and put me on Nexium – but it did not help at all.

Also, I had a 6 months episode of feeling dizzy and no doctor could explain it. I had brain and ear MRI, balance tests, balance therapy, etc. Now I know it was due to my eyes having a hard time focusing and it was due to weakness in my vision.

Also, I am a walker and used to walk 4 or 5 miles every morning, brisk walk, and the 2 or 3 months before my episode in the ER, I felt I had a very hard time with the heat – it was then April, May and June – and started having to decrease the time of my walk, walking only 2 miles, then 1 mile, and I attributed it to getting older.

Now, the week before the event in the ER at the end of June, I drove my daughter and her husband to the airport in Houston and I remember I had a hard time keeping my eyes open and I thought I was very tired. The next day, I had a massage for my shoulders and neck, and I usually close my eyes during a massage. The therapist used a heated towel on my back while working on my neck and I remember that when I first re-opened my eyes, I was seeing double and it freaked me out because it took 1/2 hr for my eyesight to get back to normal.

Then that weekend, I drove up to Denton to visit my youngest daughter – my husband David was visiting his folks up in Virginia that week. I had a real hard time keeping my eyes open during the 6 hr drive and I thought the sky was too bright and sunny, and I felt exhausted. When I finally arrived at my daughter’s apartment in Denton, she did tell me my eyelids were covering half my eyes. I thought then I simply need a good night sleep. But the next morning my eyelids still drooped. I then drove back to San Antonio and I must say it was an excruciating drive – I could not keep my eyes open and I had to buy some bandaids at the gas station to tape them open. It was a miracle I made it home safe.

I went to see my PCP in the morning and she told me right away about MG, but she said it was an “extremely extremely rare disease”. She sent me to the lab to get some blood work done. Thankfully, that very evening Dave flew back home from Virginia, because at 2am I woke up feeling “weird”. I drank a bit of water and it all came out my nose. Suddenly, I could not swallow, I had a hard time speaking, my mouth and lips and whole face were numb, my voice was nasal and very very soft, and I was extremely fatigued. That’s when Dave drove me to the ER at Methodist Hospital.

All the doctors there that night were excellent. When we told them that I was being tested for MG, they knew right away what to do. My potassium was very low, and they tried to give me some supplements but I could not swallow, They were then very concerned I might go into respiratory difficulties and set me up on the ER ICU. When the saw the thymoma on the CT the ER neurologist gave me Mestinon. And when Mestinon helped, he told me I had MG and I had to see a neurologist. He actually wanted to keep me in the hospital because he said I needed IVIG, but we were not sure my insurance would accept it so they released me on the condition I would see a neurologist right away.

I found Dr Jackson’s name when going on myasthenia.org and looking in the Physician Referral List. Dr Jackson told me that thymomas grow slowly and that I had had it for a while and been fighting MG symptoms for several years probably. I am a “go-getter” and very active person and always pushed myself “beyond”. But that year I also experienced a lot of stress – my aunt passed away in May and there was a lot of family drama. Blahblahblah, all the conditions were ripe for my MG to finally show itself!

Hi Marianne, (description of thymectomy surgery)

I am part of the MG Support Group in San Antonio and Elroy told me that you recently had a thymectomy. I also have MG and I will share my thymectomy experience with you, but remember, we are all different. For me, it got worse before it got better.

I was diagnosed with thymoma MG 2 years ago, while in the ER for some sudden and scary symptoms that did not make sense to me at 2am! Fortunately the ER doctors at Methodist Hospital in SA gave me a CT with contrast that same night and discovered that I also had a thymoma.

I was able to coordinate the surgery pretty quickly, and one month later, I had a sternotomy ( = I had my chest cracked open) They were able to remove the tumor, my thymus, and an extra 15cm of tissue all around it in order to reach clear margins. I am lucky I did not need adjuvant therapy. I stayed in the ICU for 5 days and then another 2 days in a regular room, so I was in the hospital a total of one week.

During my first two weeks post surgery, I was mainly concentrating on recovering. But by the 3rd week, my MG came back full strength and it became clear that I was headed quickly towards a crisis. So I had a course of 5 days IVIG and was put on 40mg of Prednisone (I weighed 95lbs after my surgery and that was an extremely high dose for my body) It took a good three months for me to start improving. I had to take 6 months off work. I had my surgery in July 2016 and went back to work in January 2017. I was able to ask for a lighter load at work ( = almost full time) – I am a piano accompanist at UTSA.

I have improved slowly but steadily since. These days I am feeling “MG good”, and it is better than I had ever hoped. As long as I pace myself and avoid the heat, I am able to function at 90% of my pre-MG life. Also, I have been tapering Prednisone and I am currently talking only 6mg every other day and Mestinon 60mg 3x a day.

Now, Prednisone has been really bad on my bone density and I am on Fosomax ( + extra calcium and extra D) as well. My neurologist is Dr Jackson at the MARC in San Antonio and she is giving me hope that I will eventually be able to completely wean myself from Prednisone – that would be wonderful.

So, as you see, my experience can be summed up with: “It got worse before it got better, but IT DID GET BETTER!!!!”  I want to wish you a lot of courage and strength as you heal from your thymectomy. Do not rush things. You WILL get better!!!!!

Feel free to ask me more questions if you want. I am sending you good vibes for a quick recovery and a definite improvement in your MG.

Gentle hugs,
Christine

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