Profile

Name

Arnold Erenstoft

Nickname

arnold-erenstoft

Short Bio

Was diagnosed 9 years ago. Was year after a thymectomy. Tumor remover that was seen on a random X-ray them confirmed with a CT SCAN. Diagnosis came after weaknesses in the mouth while talking. Went to ER to get checked for stroke. After talking with neurologist and gave the history of the thymoma, he order blood test to confirm I did have MG. The mestinon controlled it til October of 2019 where I had my first of 3 mg crisises. Plasmapheresis cleared it up but 6 months later back again but 7 treatments for plasma needed. Started Soliris along with the mestinon but again 6 months later nov of 2020 7 more stints of plasma. Started Cellcept while in hospital and been on ever since along with the Soliris and mestinon and it’s been stabilizing me. Been now 10 months and no plasma. The Cellcept I believe made the difference. I’m actually hoping the Cellcept and mestinon may do the trick and possibly do away with the Soliris. Doc said give it 2-3 years and can possibly wean off the Soliris and also may be some remission on its own is possible.

Year of birth

11/24/1958

Gender

male

Location

Coconut Creek Florida

Relationship

Patient

How did you hear about us?

Facebook

How long have you or the person that you are caring for had MG?

8 yeaao

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