Does anyone have both Parkinsonism and Myasthenia Gravis?

Posted by Laurie J Van Roekel @laurievr, Jun 24 5:17pm

I was thought to have Myasthenia Gravis and so my neurologist sent me to Mayo to be tested. I was diagnosed with Parkinsonism instead. He seems skeptical, but has me taking Sinemet. It is too soon to tell if it works. Any ideas?

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@laurievr

Yes, I will. I am going to add 1/2 pill slowly o I don't get stomach upset. Thank you for asking.

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Adding the medication slowly is a great plan, @laurievr. I did the same thing. As I recall, my neurologist suggested starting with a half-pill once a day and each week adding another half-pill. It was a slow process, but it worked without the stomach upset.

Looking forward to hearing how you are feeling.

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@hopeful33250

That sounds like a very interesting program, @jrwilli1. I had not heard of the CLIMB program but I found some information about it on their website. For anyone who is interested in trying an exercise program, here is the link with more information

https://www.indianaparkinson.org/welcome-to-indiana-parkinson-foundation/

Learning how to fall is an important skill for all of us as we get older. How long has he been involved with this exercise program?

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He has been doing the CLIMB program for about 4 months. I had to drive him at first because his platelets were to low from his cancer but he has been driving there himself for 2 months now. He also goes to our local gym to do cardio. So he is getting some sort of exercise at least 4 x week.

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@jrwilli1

He has been doing the CLIMB program for about 4 months. I had to drive him at first because his platelets were to low from his cancer but he has been driving there himself for 2 months now. He also goes to our local gym to do cardio. So he is getting some sort of exercise at least 4 x week.

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That is just great, @jrwilli1! I'm sure he is noticing a difference in his mobility.

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@foundryrat743

clippertwo, My goodness, you most certainly have had a rough time, lately! No problem with the spelling! I have a similar problem! For a number of years, my left shoulder would go out of socket, in a painful manner, every so often! I have a torn rotator cuff! Also, I have severe arthritis, where my knees are bone on bone! I have loose joints, inherited, that doesn’t help matters! I use a stylus pen, when I type my answers and posts, because of Parkinson’s and essential tremor, so that helps my typing mistakes, sometimes! Perhaps I should consider Mayo Clinic, regarding my shoulder and arthritic problems! Regarding diagnoses, it’s extremely difficult, for many neurologists, to diagnose Parkinson’s, because of the many variabilities of symptoms, that might be Parkinson’s related, or could be another, perhaps, similar, neurological disorder. For example, an initial symptom I had, years ago, was muscle twitching in my forearms particularly. I thought I might be losing some muscle mass, in spite of building muscle, while weight lifting, at the time! Muscle twitching could be a sign of the neorological ailment, Amyotrophic Lateral Sclerosis. However, I did not have muscle weakness. Upon seeing a well respected neurologist, in Cleveland, Ohio, she admitted me to hospital, for tests! I was in hospital for nearly a week, where EEG’s, muscle conduction studies, were performed! I had a CAT scan, and MRI. After all the testing, the neurologist diagnosed me with possible Multiple Sclerosis. I had that diagnosis, for several years, until my symptoms got worse, when I was readmitted to hospital, for more testing! This time, I was referred to a neurosurgeon, Dr. White, Chief, well known in the Neurosurgical Community. Dr. White performed an invasive catheter exploration of my brain arteries, angiography, where they initially had come up with thinking I had a brain tumor, based on an up-to-date MRI! The neurosurgeons found, with the angiogram, that I had an artery that was pressing in on my brainstem, causing msny of my subtle symptoms. At first, they told me, they could operate to relieve the pressure; however, it would be very dangerous to operate on that particular area, the mid brain, at the cerebellar pontine angle, and even if the operation was successful, I might not wake up from anesthesia, because the brain’s consciousness center is in that area! That surprised me, and it was upsetting to hear that I had a condition, considered to be inoperable! So, Dr. White put me on propanolol, and that beta-blocker, plus another blood pressure medicine, Diovan, have kept my blood pressure, and heart rate lower, thus minimizing symptoms, for the last 50 years! So, that is just one of my story’s about the path, to getting the right diagnosis. I have written on this blog, my story of how I got the diagnosis of Parkinson’s Disease, which took about 7 years of living with symptoms, before I was diagnosed! So, the bottom line, is that I understand your frustration, about uncertain diagnosis! The saying goes, ‘having patience is a virtue’! Good luck to you! D

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Thank you so much for your story , I appreciate your reply ! Good luck to you as well !

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@clippertwo

Wow where I am from ,it seems like the drs. here where i am from are pd crazy ! By that I mean that is all they they want to diagnose me with is Parkinson's . I am on my 4th neurologist. But this last one told me my gate when I walk is not like a person having Parkinson's. I am going to be happier with this Dr. He at least recognizes the fact that I have had 2 back surgeries and i have arthritis all over my body Please excuse my terrible typing ! I have one arm not working well because I had a total reverse shoulder replacement 16 days ago and
I am doing very well ! Good luck to you all! oh and by the way I had both of my shoulders done at Mayo in Rochester and am I one happy woman !

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Thank you.

Sherry Bonner

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