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?

Interested in more discussions like this? Go to the Parkinson's Disease Support Group.

@laurievr

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

Jump to this post

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.

REPLY
@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?

Jump to this post

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.

REPLY
@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.

Jump to this post

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

REPLY
@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

Jump to this post

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

REPLY
@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 !

Jump to this post

Thank you.

Sherry Bonner

REPLY

I am writing again with newer understanding of what my neurologist at Mayo diagnosed. I now know he said that I have Parkinsonism, which Parkinson Disease can fall under. Has anyone else been diagnosed with Parkinsonism? I have sent a message to him asking him to explain the difference further. I am on here hoping somene can help me with this. the diagnosis of Parkinsonism can include 1 or more other disorders, including PD.
Thank you.

REPLY
@laurievr

I am writing again with newer understanding of what my neurologist at Mayo diagnosed. I now know he said that I have Parkinsonism, which Parkinson Disease can fall under. Has anyone else been diagnosed with Parkinsonism? I have sent a message to him asking him to explain the difference further. I am on here hoping somene can help me with this. the diagnosis of Parkinsonism can include 1 or more other disorders, including PD.
Thank you.

Jump to this post

Hi @laurievr

I found some information on the Cleveland Clinic website about Parkinsonism. Here is a link to that website information
-Parkinsonism
https://my.clevelandclinic.org/health/diseases/22815-parkinsonism
On Connect, there is another discussion on this topic. Here is a link for you to read.
https://connect.mayoclinic.org/discussion/parkinsonism/
Here is some additional information:

Parkinson's is caused mainly by the degeneration of nerve cells in the brain, while the causes of parkinsonism are numerous, ranging from the side effects of medications to chronic head traumas to metabolic diseases to toxins to neurological diseases. Jun 29, 2021"
--- Parkinson's vs. Parkinsonism - Davis Phinney Foundation: https://davisphinneyfoundation.org/parkinsons-vs-parkinsonism/

Types of Parkinsonisms: https://www.parkinson.org/Understanding-Parkinsons/What-is-Parkinsons/Types-of-Parkinsonisms

REPLY
@hopeful33250

Hi @laurievr

I found some information on the Cleveland Clinic website about Parkinsonism. Here is a link to that website information
-Parkinsonism
https://my.clevelandclinic.org/health/diseases/22815-parkinsonism
On Connect, there is another discussion on this topic. Here is a link for you to read.
https://connect.mayoclinic.org/discussion/parkinsonism/
Here is some additional information:

Parkinson's is caused mainly by the degeneration of nerve cells in the brain, while the causes of parkinsonism are numerous, ranging from the side effects of medications to chronic head traumas to metabolic diseases to toxins to neurological diseases. Jun 29, 2021"
--- Parkinson's vs. Parkinsonism - Davis Phinney Foundation: https://davisphinneyfoundation.org/parkinsons-vs-parkinsonism/

Types of Parkinsonisms: https://www.parkinson.org/Understanding-Parkinsons/What-is-Parkinsons/Types-of-Parkinsonisms

Jump to this post

Thank you for the information you shared, Teresa. I will check them out and hopefully be better informed. I am not afraid of information, even if it is difficult to find out. It helps me to know what to expect, possibly, and I keep looking up to the One who knows and cares for me.

REPLY
@jrwilli1

My husband has had Parkinson’s for 8 yrs and yes the sinemet helped right away. Through the years we have had to change dosage but it has helped with a lot of his symptoms. Hang in there. And get involved in some kind of exercise programs for Parkinson’s.

Jump to this post

I’m so lazy. I don’t want to do them

REPLY
@anitaxblack339

I’m so lazy. I don’t want to do them

Jump to this post

I'm sorry to hear that, @anitaxblack339. Exercise is a great help in dealing with Parkinson's symptoms and also the general effects of aging.

Here are some YouTube links that describe exercise routines for your information,
--Seated exercises for Parkinson's
https://www.youtube.com/results?search_query=seated+exercises+for+parkinson%27s+disease
Will you take a look at them?

REPLY
Please sign in or register to post a reply.