In Remission Now

By CommunityMember38a69b

1 min read

I was originally diagnosed in 1988 I woke up one morning unable to fully open my eyes. My eyeballs would not move. This, it seems, are quite common symptoms.

After diagnosis, I realized I had in fact been exhibiting issues for some time (e.g. fatigue, aching muscles, and just dropping off to sleep). It was as if someone just flicked a switch.

Currently in remission

I volunteered for research and underwent a lot of tests including an EMG at Newcastle General Hospital. After a year on steroids, (not without side effects) I showed signs of improvement. I was re-admitted to the above hospital for a week of tests including an EMG again. It was decided I was in remission.

I have been healthy since and consider myself blessed. I do take care of my health, and on occasion feel as if I might be relapsing. So far, so good.

Share my own story

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Jodi Enders Moderator & Contributor
<inline-mention username="CommunityMember38a69b" user-id="6642446"/> How has life been going for you the first half of this year? - Jodi, Team Member
CommunityMember1363 Member
Nice to hear that someone else is in remission. I had a thymectomy in April last year to remove a thymoma. The thymoma had put out a couple of tentacles which had attached themselves to my pericardial sac and the upper lobe of my left lung. An oncologist told me that it wasn't cancerous but it was a suspicious mass so I had five weeks of radiotherapy and I am pleased to say that two subsequent ct scans have been clear. I now have scans every six months and have been in remission for over two years. The thymectomy to remove the thymus gland and thymoma made a significant improvement in my condition.
1. CommunityMember38a69b Member
 <inline-mention username="CommunityMember1363" user-id="6149323"/> Great to hear positive news from you. Good luck, long may it last. I had discussions with the consultant when I was first ill. He said that thymectomy gave good results for young women but less so for men. A scan revealed no abnormalities with my thymus, hence it was decided not to pursue surgery.
2. CommunityMember38a69b Member
 <inline-mention username="CommunityMember1363" user-id="6149323"/> Thank you for your support. I'm very glad to hear your op is working out, good luck. It was suggested during my original diagnosis that I should have a thymectomy. However I was told that it only appeared to work for young females. Stay well.
Claire Denton Moderator
It is wonderful to hear remission stories! I am curious if there was catalyst that you can identify as to what sparked the initial symptoms? Not that there always is one, but it is an area that interests me. I had a remission many years ago, but then it came back. After 2 years with no symptoms, I actually forgot what I was dealing with and had to start all over. I am well controlled now with the help of Cell Cept and Rituxan. Best of wishes to you! -Claire (Team Member)
1. CommunityMember38a69b Member
 Hi Claire. Whatever triggered my initial symptoms still remains a bit of a mystery. I was told at the time that a viral infection can cause an imbalance, coincidentally I had had a pretty severe infection a year or so previously. Other than that no-one ever seemed clear about causes. Good luck with your treatment, I hope all goes well for you. Lawrie
2. CommunityMember1363 Member
 <inline-mention username="Claire Denton" user-id="4153218"/> hi in December 2019 I started slurring my speech. Ct and Mri scans showed that I hadn't had a tia or major stroke. A specific blood test showed that I was suffering from mg. The slurred speech was the first sign that something was wrong with me and I initially thought I was suffering from als or motor neurone disease as we call it in the UK. Rgds bill