Hello, I am still having a terrible time trying to sort out my mother's medication. I managed to get a private appointment with her neurologist on Friday and he announced he didn't think she had Parkinson's ! She has been treated for Parkinson's for the last 8 years approximately but only really suffering in the last year. He came to this conclusion because she does not have any rigidity and I showed him a video of her as she suddenly declines and the medication wears off. This has just started to happen dramatically. She goes extremely weak and can barely speak on a couple of occasions she says everything has gone black and it's like she's going to lose consciousness.
I've been thinking about it and I think she does have Parkinson's but has been so undermedicated for so long because she does not display any rigidity or freezing but suddenly she is way behind on what she needs for her brain.
Does anyone have Parkinson's without rigidity ?? I am not in a good place trying to care for her and I'm deteriorating badly myself I really need some help somehow.
Written by
heidle
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Parkinson's symptoms are notable for having tremendous variety. I had rigidity early on but no significant rigidity at this time. If her symptoms are responsive to levodopa medication, which they are, that means that adding dopamine to her brain fixes the problem, which means that her brain is short of dopamine, which by definition is Parkinson's. A long-winded way of saying if levodopa helps then she has Parkinson's.
From your description it seems like she probably has blood pressure problems, which can also arise from Parkinson's. Does the threatened loss of consciousness get worse if she is standing? It would be in order to get a good blood pressure cuff and compare her blood pressure during normal periods to times when she is about to blackout. If she does have blood pressure issues that can be treated, but the first step is to see if that is the problem.
Please get a second opinion. She may have orthostatic hypotension, causing low blood pressure. If Sinemet helps, a neurologist needs to evaluate why and cause and diagnostic possibilities. It is always wise to get second opinions, when one is at a crossroads, like you are, and you know something is wrong, and don’t know if the right diagnosis has been made.
For how long you consult the mentioned neurologist. If you are consulting him for the first time , suggest to meet the earlier doctors who had diagnosed her and treated her. They can best judge the situation
BTW neurologists don't have even 1% understanding of PD. Patients have a better experience of themselves
Check out ElizabethDavies50 post re: her dear mother who had gone through similar on and off diagnosis because of not being rigid or having tremor. I also do not have rigidity but have tremor (of the head and internally) and cannot get a diagnosis but do well on levodopa. Without it I cannot function...simple as that.. but too complicated for a smart neurologist! Ha.. I feel for your mother and you but hang in there. It is a trial when doctors get "rigid" standards that don't meet the true picture. No pun intended.
At the top it will show MEMBERS so click it and then type in ElizabethDavis50. Just start spelling and it will come up with the first few letters. Click on her name and her posts will come up.
My symptoms are stiffness in my face, neck, head. I'm pretty sure I have hypomimia because I don't feel my face shows expression... and if I overdo activity; stiffness walking, trouble getting out of a chair and feet that feel like they're encased in cement. Needless to say I pace myself every day. Used to be very active.
Swallowing assessment in Sept. 2017 showed decreased tongue based movement and talking too long or singing results in stiffer neck and gets painful. My digestion is very slow (gastroparesis). The core of my body is stiff and I believe it's all related. Seems to run down the center of my body but was told I should be rigid in the center and in my hips which I don't have.
I have apathy/passivity... but not depression although did have. Trouble concentrating and difficulty with vision. Poor memory. Always feel like I have the flu in my head. Really have to force myself to socialize. Face feels so uncomfortable and I get confused easily.
Head tremor throughout the day. Internal tremor starting at the head to upper belly when lying down. Often wake up shaking inside and lying down at night triggers it as well. Anxiety related, I think and panicky feeling sometimes but regular L-dopa alleviates it.
Fatigue ++. Lost sense of smell. Constipation ++. Fall asleep but wake up early...2-3am.
Temperature sensitivity++ heat and cold.
My limbs aren't bad although occasionally my left ankle tries to turn inward. I used to get terrible cramps in it and sometimes weakness in the thighs.
One time only had left forefinger do a tremor for a minute or so.
Diagnosed with Essential Tremor but was told I may have to wait a couple of years to know for sure. That was 3 years ago and then all the other stuff started.
Handwriting is A-OK. No tremors or stiffness in arms but weak muscles that are painful from too much exertion that last for months and months.
I'm at a loss but started on Mucuna Pruriens almost a year ago and have lots of success with keeping the stiffness at bay for 4 or so hours. When it wears off the head and neck start to get stiff again and the head tremor starts getting worse. If I go without L-Dopa for a few days I get tinnitus but it is relieved with a dose. Did that recently just to see how I would feel and my ears rang for several nights continuously. Strange as I never had tinnitus before. That's about it. I guess I am doing better than others on this site but I often feel pretty miserable. I've seen several neurologists, one who moved away and no one seems to want to pursue this.
Daily doses of amino acids help the mental aspects of this condition immensely. I can't do without them. I take quite a few and to help me sleep at night taking GABA with melatonin and magnesium and L-tyrosine. Amino acids work! Mucuna Pruriens works and that's about all I am going on for now. Not putting much hope in neurology for now. I guess I'll have to wait until I walk into an office with something easily seen.
Hope this helps Heidle and your mom gets some help for the blackouts.
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