Does anyone have both Parkinsonism and Myasthenia Gravis?
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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After months of physical exercise ( forced exercise ) therapy, I was able to overcome the shuffling gait, and stooped over posture, and slowness of gait movement, that had really affected my ambulation. I lift my feet higher, have better arm swing, and have a more erect posture, walking. At my recent neurologist’s appointment, my Doctor was amazed at my ability to regain, the more normal gait and posture, that I had seemingly, lost, as my long term Parkinson’s Disease was advancing! The neurologist had upped my Sinemet to 3 pills, 3 times a day, which did help! I’m in my late 70’s, and the ‘BIG’ exercise routines and balance exercises were challenging and, at times, somewhat painful, for me! I pushed myself hard, forcing the bigger, wider movement exercises, recommended specifically for Parkinson’s Disease! I managed to get through the stiffness, and pain. My physical therapist exercised by my side, giving me the correct example of how each exercise is to be done. After therapy sessions concluded. each day I continue to do several repetitions of ‘BIG’ exercises, recommended by The Parkinson’s Society. These exercises help promote brain neuro plasticity, which means one’s brain is creating new pathways of relearning how to walk, with a better gait, and where a patient has better control of slowness of movement etc., caused by Parkinson’s Disease! I have written in this forum, before, about the amazing benefits of physical therapy exercises, to help overcome the stiffness, pain, and slow ambulation ( shuffling), one has to deal with, as a result of motor deficits, caused by Parkinson’s Disease! I am proof that the goal of overcoming some of the debilitating motor symptoms, caused by Parkinson’s Disease, is possible! I want to share this message of hope, with fellow Parkinson’s Disease patients, and encourage others to explore the benefits of exercise! “No pain, no gain”, is a motto I have used for many years, in regards to getting through exercise routines! Good luck 🍀 to all, who are faced with coping with challenges of living, having been diagnosed with Parkinson’s Disease or Parkinson’s related disorders!
Be patient and write everything down. How you are feeling, what questions you have and how you are feeling about your diagnosis. Never doubt your feelings. I hope you continue to live a productive life and keep going strong.
I thought I would update my post. I have been on Sinemet for nearly 4 months now and it has helped reduce my Parkinsonism's symptoms quite a bit, although we had to update my dose from 3 pills a day to 4. The "gap" when I was taking 3 let my symptoms of tingles inside my arms come back, but I no longer feel it, for now. My neurologist is on board and doing what he can to help me adjust to the PD. I continue to need to be careful when I turn because I sometimes lose my balance and have fallen backwards twice and hit my head. I also feel very tired and weak if I overdo. I use a hiking stick if I have to walk very far. I realize now that I have had symptoms for 3-4 years, although they began to get worse and I didn't know what it was. Reading what others are going through helps me understand.
I appreciate reading your update, @laurievr. It is good to hear that the Sinemet is working to help reduce the PD symptoms. Your comment, "I also feel very tired and weak if I overdo." is quite common with PD. Stress and fatigue can certainly cause the PD symptoms to worsen.
Exercise is an important adjunct to the PD medication.
You do not mention any physical therapy or any exercise program. Have you been involved in any exercise program?
I take our dog for a walk most days, although it is a little slow going because she is 10. I used to walk by myself for at least 2 miles, but I have not been able to do that for 3 years because of my legs stiffening up. But it I walk by myself now I can only walk about half a mile.
Myasthenia gravis (MG) and Parkinson's disease are both associated with inadequate NAD (the co-enzyme nicotinamide adenine dinucleotide). I previously linked the NoPark trials that are being conducted in Norway, which showed positive signs in the first trial. They are using either 1000 mg or 3000 mg per day because of varying levels of effectiveness or the placebo. This link indicates that MG is a neuromuscular condition that is also associated with inadequate NAD in neurons. The effective way to increase NAD is to take Niagen (Nicotinamide riboside, NR). It is available on Amazon, at Sprouts, The Vitamin Shoppes, etc., and to eat a lot of varied fruits and vegetables, or/and to take luteolin and quercetin that is found in those fruits and vegetables. Researchers have demonstrated that NAD+ can restore balance in the immune system and reverse the damage done by autoimmune responses.
Autoimmune Diseases and NAD+ IV Therapy Success. AI Overview
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Nicotinamide adenine dinucleotide (NAD+), a coenzyme found in all living cells, may help treat autoimmune diseases:
Regulates immune responses: NAD+ can regulate how CD4+ T cells differentiate, which may help block and reverse the progression of autoimmune diseases.
Restores tissue integrity: NAD+ can help restore damaged tissue caused by autoimmunity.
Protects against inflammation: NAD+ can block acute or chronic inflammation.
Turns destructive cells into protective cells: NAD+ may be able to turn destructive autoimmune cells into protective cells.
NAD+ levels decrease with aging and are consumed during the development of autoimmune diseases. NAD+ IV therapy has shown promise for treating autoimmune diseases such as multiple sclerosis, rheumatoid arthritis, inflammatory bowel disease, and diabetes.