Does anyone have both Parkinsonism and Myasthenia Gravis?

Posted by Laurie J Van Roekel @laurievr, 6 days ago

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.

Hello @laurievr and welcome to Mayo Connect. I can understand your confusion. Often neurological problems have similar symptoms so it can be difficult to come up with a diagnosis. Regarding taking Sinemet, I can only speak from my personal experience that Sinemet made a difference for me right away. My symptoms were gait disturbances, foot dragging and other movement problems.

What type of symptoms are you having? How long have you been taking Sinemet?

REPLY

My Neurologist thought that my eye ptosis, and seeing double ( double vision episodes ), could be attributed to Myasthenia Gravis, so a blood sample was sent to Mayo Clinic, that came back with no positive antibodies. I have been diagnosed with Parkinson’s Disease, for seven years, now! Good luck with getting symptoms and diagnostics straightened out!

REPLY
@foundryrat743

My Neurologist thought that my eye ptosis, and seeing double ( double vision episodes ), could be attributed to Myasthenia Gravis, so a blood sample was sent to Mayo Clinic, that came back with no positive antibodies. I have been diagnosed with Parkinson’s Disease, for seven years, now! Good luck with getting symptoms and diagnostics straightened out!

Jump to this post

Hello @foundryrat743

I appreciate you adding to this discussion on PD and MG. It sounds like you have had a similar experience distinguishing between the two diagnoses. Other than the double vision, what other symptoms have you had that led to the PD diagnosis.

What type of treatment have you had since the PD diagnosis?

REPLY

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.

REPLY
@hopeful33250

Hello @foundryrat743

I appreciate you adding to this discussion on PD and MG. It sounds like you have had a similar experience distinguishing between the two diagnoses. Other than the double vision, what other symptoms have you had that led to the PD diagnosis.

What type of treatment have you had since the PD diagnosis?

Jump to this post

I had Parkinson’s symptoms, for about 5 years before I was diagnosed. We lived in a small town, in those early years, and there were no neurological specialists, that practiced there! My family doctor never mentioned Parkinson’s Disease, as a cause, for my myriad symptoms. My symptoms started approx. 12 years ago, with altered taste sensation. Then I started having constipation and resting tremors with my right hand ( like pill rolling movement ). I’d already had essential tremor in my hands, so I don’t think my Family Doctor paid much attention to the resting tremor. After a couple years, I was getting stiffness in my legs, and predominantly left leg and arm. After about a year, of the stiffness getting worse, and my gait becoming slower, my wife noticed I sometimes dragged one leg. Then rigidity started setting in, where I had cogwheel rigidity in my arms and legs, where I was having jerky movement, when extending arms and legs! My balance seemed to be getting a little worse, in the 3rd year, of symptoms. Then, in the 4th year, things got much worse. I got numbness and peripheral neuropathy in my hands and lower legs and feet, and I started falling! My first couple falls, felt weird, because I hesitated, while walking, and when leaning forward, I lost my balance, and started falling, but managed to break my fall, and not get hurt. The sensation of hesitating got worse, and, in the 5th year, of symptoms, I actually froze, for about a minute, when I was out walking, two dogs. I had their leashes wrapped around my wrist, so that they couldn’t run loose. Thank goodness for that, because at the conclusion of that freezing moment, with the dogs pulling a bit, wanting to get going, I actually was so ‘frozen in place, and stiff’ that I fell forward, and couldn’t move anything, to break my fall, and I ended up face planting on the road concrete! It was a horrible feeling for me, because I felt paralyzed! Unfortunately, I blacked out, with a concussion. The dogs couldn’t run away, and I was unconscious for just a brief amount of time! I reckon no cars came by, or no one saw what happened to me. My house was just about 500 feet away, so, I struggled to get up. If I could just make it to the house. My face was bleeding! I had a huge swelling on my forehead, when I landed on the pavement! I had a splitting headache, My face was scraped up. Luckily, I don’t think I had any broken bones! The dogs are small pets, and they behaved fairly well, considering what had just happened. I sorta dragged myself home, and my wife took one look at me, could tell I was hurt badly, so she got me in the car, and drove me to the local hospital ER. The hospital was only about 6 blocks away. Once I was admitted to the ER, they took a cat scan, and I had a heart ultrasound. Also, they gave me an EEG, and an EKG. The ER Doc said that was the biggest hematoma, he’d ever seen on a patient’s forehead. So, I was diagnosed with blunt force trauma, and a concussion! After being sent home, several hours later, both of my eyes were turning black and blue, and muscles in my legs and hands, were super sore! About 8:30pm, my son-in-law stopped over. He did not know that I had fallen and had a concussion! He took one look at me, totally surprised, and said “What happened to you?” My son-in-law just happens to be an MD! He was doing rounds, on the hospital floors, at the same time, as I was in the ER, but I didn’t know he was there, and he didn’t know I was there! So, I explained what happened, and how I fell, walking the dogs, and ending up with a concussion! So, in spite of all these symptoms becoming apparent over several years, culminating in this serious injury/fall, still there was no reason given to me, by my Family Doctor, or even speculation voiced by my son-in-law, as to what was causing my symptoms. After this last fall, my daughter stated that she had enough, and wanted my wife and I to move to the big city, about 120 miles away, where there is a regional hospital. They have many specialists at the regional hospital. Shortly after I had that fall, where I had the concussion, my son-in-law was offered a job, as an MD Hospitalist at the big city Regional Hospital! My son-in-law accepted the position, and they moved to the big city, within a couple months. My wife and I moved to the same city, after we sold our hone, a few months later. As soon as we moved up there, my daughter lined me up to see a reputable Internist MD, and when I saw him, and he got my history, and examined me, when he saw the resting tremor, my stiff walking, and, especially, the cogwheel rigidity, the Internist told me, that he suspected that I have Parkinson’s Disease. That certainly was a shock to me, because I had not known of anybody who had PD! All I knew, was that it was a dreaded, serious, Neurodegenerative disease! i tried not to show any emotion to the Doctor, when he said those words Parkinson’s Disease’. Then, the Internist said that he was going to call one of the best Neurologist’s in the city, right away, and that I was to just stay in the exam room, and he would be right back. So, when he came back, about 15 minutes later, the Internist told me that the neurologist that he wanted me to see, was out of town, for several weeks, so, because he felt that I needed to be seen, soon, he set up an appointment with another neurologist, a veteran Doctor, fot the next day! When I saw the neurologist, the next day, he confirmed the diagnosis, by stating that he would agree with what the Internist said; however, he would put me on a regimen of Sinemet, and if my symptoms improved, significantly, then that would prove the diagnosis of Parkinson’s Disease. So, Sinemet has helped me and, as my PD has progressed, to include non-motor symptoms, I am now taking 3 tablets of Sinemet, 3 times a day. The double vision symptoms, along with the ptosis (drooping eyelid), occurred for the first time, about 2 years ago. Ocular Myasthenia Gravis is still a possible diagnosis, and I have an appointment with an ophthalmologist set up, soon, so we will see how that goes. Thank you for your supportive input! Wishing you the best!

REPLY
@foundryrat743

I had Parkinson’s symptoms, for about 5 years before I was diagnosed. We lived in a small town, in those early years, and there were no neurological specialists, that practiced there! My family doctor never mentioned Parkinson’s Disease, as a cause, for my myriad symptoms. My symptoms started approx. 12 years ago, with altered taste sensation. Then I started having constipation and resting tremors with my right hand ( like pill rolling movement ). I’d already had essential tremor in my hands, so I don’t think my Family Doctor paid much attention to the resting tremor. After a couple years, I was getting stiffness in my legs, and predominantly left leg and arm. After about a year, of the stiffness getting worse, and my gait becoming slower, my wife noticed I sometimes dragged one leg. Then rigidity started setting in, where I had cogwheel rigidity in my arms and legs, where I was having jerky movement, when extending arms and legs! My balance seemed to be getting a little worse, in the 3rd year, of symptoms. Then, in the 4th year, things got much worse. I got numbness and peripheral neuropathy in my hands and lower legs and feet, and I started falling! My first couple falls, felt weird, because I hesitated, while walking, and when leaning forward, I lost my balance, and started falling, but managed to break my fall, and not get hurt. The sensation of hesitating got worse, and, in the 5th year, of symptoms, I actually froze, for about a minute, when I was out walking, two dogs. I had their leashes wrapped around my wrist, so that they couldn’t run loose. Thank goodness for that, because at the conclusion of that freezing moment, with the dogs pulling a bit, wanting to get going, I actually was so ‘frozen in place, and stiff’ that I fell forward, and couldn’t move anything, to break my fall, and I ended up face planting on the road concrete! It was a horrible feeling for me, because I felt paralyzed! Unfortunately, I blacked out, with a concussion. The dogs couldn’t run away, and I was unconscious for just a brief amount of time! I reckon no cars came by, or no one saw what happened to me. My house was just about 500 feet away, so, I struggled to get up. If I could just make it to the house. My face was bleeding! I had a huge swelling on my forehead, when I landed on the pavement! I had a splitting headache, My face was scraped up. Luckily, I don’t think I had any broken bones! The dogs are small pets, and they behaved fairly well, considering what had just happened. I sorta dragged myself home, and my wife took one look at me, could tell I was hurt badly, so she got me in the car, and drove me to the local hospital ER. The hospital was only about 6 blocks away. Once I was admitted to the ER, they took a cat scan, and I had a heart ultrasound. Also, they gave me an EEG, and an EKG. The ER Doc said that was the biggest hematoma, he’d ever seen on a patient’s forehead. So, I was diagnosed with blunt force trauma, and a concussion! After being sent home, several hours later, both of my eyes were turning black and blue, and muscles in my legs and hands, were super sore! About 8:30pm, my son-in-law stopped over. He did not know that I had fallen and had a concussion! He took one look at me, totally surprised, and said “What happened to you?” My son-in-law just happens to be an MD! He was doing rounds, on the hospital floors, at the same time, as I was in the ER, but I didn’t know he was there, and he didn’t know I was there! So, I explained what happened, and how I fell, walking the dogs, and ending up with a concussion! So, in spite of all these symptoms becoming apparent over several years, culminating in this serious injury/fall, still there was no reason given to me, by my Family Doctor, or even speculation voiced by my son-in-law, as to what was causing my symptoms. After this last fall, my daughter stated that she had enough, and wanted my wife and I to move to the big city, about 120 miles away, where there is a regional hospital. They have many specialists at the regional hospital. Shortly after I had that fall, where I had the concussion, my son-in-law was offered a job, as an MD Hospitalist at the big city Regional Hospital! My son-in-law accepted the position, and they moved to the big city, within a couple months. My wife and I moved to the same city, after we sold our hone, a few months later. As soon as we moved up there, my daughter lined me up to see a reputable Internist MD, and when I saw him, and he got my history, and examined me, when he saw the resting tremor, my stiff walking, and, especially, the cogwheel rigidity, the Internist told me, that he suspected that I have Parkinson’s Disease. That certainly was a shock to me, because I had not known of anybody who had PD! All I knew, was that it was a dreaded, serious, Neurodegenerative disease! i tried not to show any emotion to the Doctor, when he said those words Parkinson’s Disease’. Then, the Internist said that he was going to call one of the best Neurologist’s in the city, right away, and that I was to just stay in the exam room, and he would be right back. So, when he came back, about 15 minutes later, the Internist told me that the neurologist that he wanted me to see, was out of town, for several weeks, so, because he felt that I needed to be seen, soon, he set up an appointment with another neurologist, a veteran Doctor, fot the next day! When I saw the neurologist, the next day, he confirmed the diagnosis, by stating that he would agree with what the Internist said; however, he would put me on a regimen of Sinemet, and if my symptoms improved, significantly, then that would prove the diagnosis of Parkinson’s Disease. So, Sinemet has helped me and, as my PD has progressed, to include non-motor symptoms, I am now taking 3 tablets of Sinemet, 3 times a day. The double vision symptoms, along with the ptosis (drooping eyelid), occurred for the first time, about 2 years ago. Ocular Myasthenia Gravis is still a possible diagnosis, and I have an appointment with an ophthalmologist set up, soon, so we will see how that goes. Thank you for your supportive input! Wishing you the best!

Jump to this post

Hello @foundryrat743

Your post speaks to the need to persist when you have a myriad of neurological symptoms that evade a diagnosis. I admire your persistence. It is especially good that you were willing to move to an area that had more sophisticated medical centers with more specialists. Not everyone is able to make that kind of a move.

I'm glad that Sinemet has helped you. Once you find a new specialist in your area perhaps you can ask for a referral for physical therapy for PD patients. Have you had any physical therapy yet that is specific for PD?

I look forward to hearing from you as you continue to look for answers from an ophthalmologist as well as your neurologist. Will you post again?

REPLY
@hopeful33250

Hello @laurievr and welcome to Mayo Connect. I can understand your confusion. Often neurological problems have similar symptoms so it can be difficult to come up with a diagnosis. Regarding taking Sinemet, I can only speak from my personal experience that Sinemet made a difference for me right away. My symptoms were gait disturbances, foot dragging and other movement problems.

What type of symptoms are you having? How long have you been taking Sinemet?

Jump to this post

Thank you for your reply. I am just starting Sinemet, taking it for the past week and introducing it slowly. I have very light symptoms that were seen by the doctor at Mayo. But my legs are the worst, with weakness, stiffness, and barely being able to move if I walk too far. My local neurologist has seen me and prescibed the Sinemet.

REPLY
@foundryrat743

My Neurologist thought that my eye ptosis, and seeing double ( double vision episodes ), could be attributed to Myasthenia Gravis, so a blood sample was sent to Mayo Clinic, that came back with no positive antibodies. I have been diagnosed with Parkinson’s Disease, for seven years, now! Good luck with getting symptoms and diagnostics straightened out!

Jump to this post

Thank you for your reply. I too, have eye ptosis and double vision, and my local neurologist leaned toward MG, but it was ruled out by all of the tests at Mayo, especially with an EMG. The doctor I saw at Mayo observed quite a few symptoms of Parkinson's when he first visited with me, even though they are very slight and I do not notice them all. I am hoping the Sinemet begins to show some help. I am taking it in small amounts and will increase the amount ea=ach week.

REPLY
@hopeful33250

Hello @foundryrat743

I appreciate you adding to this discussion on PD and MG. It sounds like you have had a similar experience distinguishing between the two diagnoses. Other than the double vision, what other symptoms have you had that led to the PD diagnosis.

What type of treatment have you had since the PD diagnosis?

Jump to this post

At Mayo, along with other tests, the EMG proved I do not have MG. The main doctor I saw could see small movements I didn't know I had, such as pill-rolling, a slight tremor in my head, and not swaying my left arm when I walked. My legs are a big issue, getting stiff if I walk too much or pressure is put on them. I am now taking Sinemet in the lower dose and will work up to a higher dose each week, as suggested by the doctor. My local neurologist is excellent, but was surprised by the PD diagnosis. He has prescribed the Sinemet.

REPLY
@foundryrat743

I had Parkinson’s symptoms, for about 5 years before I was diagnosed. We lived in a small town, in those early years, and there were no neurological specialists, that practiced there! My family doctor never mentioned Parkinson’s Disease, as a cause, for my myriad symptoms. My symptoms started approx. 12 years ago, with altered taste sensation. Then I started having constipation and resting tremors with my right hand ( like pill rolling movement ). I’d already had essential tremor in my hands, so I don’t think my Family Doctor paid much attention to the resting tremor. After a couple years, I was getting stiffness in my legs, and predominantly left leg and arm. After about a year, of the stiffness getting worse, and my gait becoming slower, my wife noticed I sometimes dragged one leg. Then rigidity started setting in, where I had cogwheel rigidity in my arms and legs, where I was having jerky movement, when extending arms and legs! My balance seemed to be getting a little worse, in the 3rd year, of symptoms. Then, in the 4th year, things got much worse. I got numbness and peripheral neuropathy in my hands and lower legs and feet, and I started falling! My first couple falls, felt weird, because I hesitated, while walking, and when leaning forward, I lost my balance, and started falling, but managed to break my fall, and not get hurt. The sensation of hesitating got worse, and, in the 5th year, of symptoms, I actually froze, for about a minute, when I was out walking, two dogs. I had their leashes wrapped around my wrist, so that they couldn’t run loose. Thank goodness for that, because at the conclusion of that freezing moment, with the dogs pulling a bit, wanting to get going, I actually was so ‘frozen in place, and stiff’ that I fell forward, and couldn’t move anything, to break my fall, and I ended up face planting on the road concrete! It was a horrible feeling for me, because I felt paralyzed! Unfortunately, I blacked out, with a concussion. The dogs couldn’t run away, and I was unconscious for just a brief amount of time! I reckon no cars came by, or no one saw what happened to me. My house was just about 500 feet away, so, I struggled to get up. If I could just make it to the house. My face was bleeding! I had a huge swelling on my forehead, when I landed on the pavement! I had a splitting headache, My face was scraped up. Luckily, I don’t think I had any broken bones! The dogs are small pets, and they behaved fairly well, considering what had just happened. I sorta dragged myself home, and my wife took one look at me, could tell I was hurt badly, so she got me in the car, and drove me to the local hospital ER. The hospital was only about 6 blocks away. Once I was admitted to the ER, they took a cat scan, and I had a heart ultrasound. Also, they gave me an EEG, and an EKG. The ER Doc said that was the biggest hematoma, he’d ever seen on a patient’s forehead. So, I was diagnosed with blunt force trauma, and a concussion! After being sent home, several hours later, both of my eyes were turning black and blue, and muscles in my legs and hands, were super sore! About 8:30pm, my son-in-law stopped over. He did not know that I had fallen and had a concussion! He took one look at me, totally surprised, and said “What happened to you?” My son-in-law just happens to be an MD! He was doing rounds, on the hospital floors, at the same time, as I was in the ER, but I didn’t know he was there, and he didn’t know I was there! So, I explained what happened, and how I fell, walking the dogs, and ending up with a concussion! So, in spite of all these symptoms becoming apparent over several years, culminating in this serious injury/fall, still there was no reason given to me, by my Family Doctor, or even speculation voiced by my son-in-law, as to what was causing my symptoms. After this last fall, my daughter stated that she had enough, and wanted my wife and I to move to the big city, about 120 miles away, where there is a regional hospital. They have many specialists at the regional hospital. Shortly after I had that fall, where I had the concussion, my son-in-law was offered a job, as an MD Hospitalist at the big city Regional Hospital! My son-in-law accepted the position, and they moved to the big city, within a couple months. My wife and I moved to the same city, after we sold our hone, a few months later. As soon as we moved up there, my daughter lined me up to see a reputable Internist MD, and when I saw him, and he got my history, and examined me, when he saw the resting tremor, my stiff walking, and, especially, the cogwheel rigidity, the Internist told me, that he suspected that I have Parkinson’s Disease. That certainly was a shock to me, because I had not known of anybody who had PD! All I knew, was that it was a dreaded, serious, Neurodegenerative disease! i tried not to show any emotion to the Doctor, when he said those words Parkinson’s Disease’. Then, the Internist said that he was going to call one of the best Neurologist’s in the city, right away, and that I was to just stay in the exam room, and he would be right back. So, when he came back, about 15 minutes later, the Internist told me that the neurologist that he wanted me to see, was out of town, for several weeks, so, because he felt that I needed to be seen, soon, he set up an appointment with another neurologist, a veteran Doctor, fot the next day! When I saw the neurologist, the next day, he confirmed the diagnosis, by stating that he would agree with what the Internist said; however, he would put me on a regimen of Sinemet, and if my symptoms improved, significantly, then that would prove the diagnosis of Parkinson’s Disease. So, Sinemet has helped me and, as my PD has progressed, to include non-motor symptoms, I am now taking 3 tablets of Sinemet, 3 times a day. The double vision symptoms, along with the ptosis (drooping eyelid), occurred for the first time, about 2 years ago. Ocular Myasthenia Gravis is still a possible diagnosis, and I have an appointment with an ophthalmologist set up, soon, so we will see how that goes. Thank you for your supportive input! Wishing you the best!

Jump to this post

Wow, you had to go through a lot to get diagnosed! For a few years now, my local (and excellent) neurologist has thought I had MG, but he insisted I go to Mayo Clinic to be tested. I finally was able to go about 3 weeks ago now, and was totally surprised that I have PD. The blood tests, and several other tests, especially the EMG ruled out MG. When I got home, my neurologist was surprised at the PD diagnosis, but the Mayo doctor saw symptoms I didn't know I have, which were a slight movement in my head, pill-rolling, and not swinging my left arm when I walk. What he didn't see was my difficult walking, but as I walked more that day, my legs got stiff and i could barely walk, so my husband put me in a wheelchair so we could get around.
I ask about having both because I am not sure my neurologist is convinved it is PD, but he prescribed Sinemet and I am taking it slowly, adding 1/2 a pill to 3x/day and working up to 1 pill 3x a day. I saw my ophthamologist this week, and he prescribed an update on my prisms in my glasses and will se me again in a few months to see how that goes. He has done corrective surgery on my eyes nefore but it didn't last, which he tould me that if I have MG, it won't last.
I am glad that you have been proactive in seeking help, as I continue to do the same thing.!

REPLY
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