Parkinsonism

[Deb]

Do you know of any other EDS patients that have Parkinsonism? I have EDS, mast cell issues and mito from my mom.
But I’m starting to suspect that my dad and his sister and I have Parkinson’s. My aunt has a diagnosis of Essential Tremors which should be monosymptomatic whereas she has the other symptoms.
I have all four cardinal symptoms though my tremors are better than they used to be and now seem to be just when triggered like after a shower or when I stand up fast. The tremors are more on the right and the dystonia is more on the left but both are on both sides.
I have muscle rigidity and a Parkinson’s gait now most of the time, postural instability a lot, I will fall down if I turn to fast and my knees buckle right out from under me which is a rare Parkinson symptom.

There is such a thing as NPH with Parkinsonism but it is really rare. I watched some videos on it and it does not show my gait or symptoms. I do know that I get External Communicating Hydrocephalus when my upper back or neck get out. I get an adjustment and the headache goes away for weeks at a time. While my back is out, I have a clear case of hydrocephalus.
Since I have EDS I suspected it might be the cause of more of my problems. But if my PD symptoms were caused by EDS it seems more on here would have these PD symptoms.

I have an appointment with a Movement Disorder Specialist (MDS – neurologist) but it is a few months out. I am high priority on her list for cancellations. Meanwhile I’m wondering if I should be doing something about the hydrocephalus possibility. I don’t usually have headaches.

Also, I also have this thing with the outside of my right eye. If I look right it can get a nystagmus that will make me sick. It jumps and I have to close my eyes. Sometimes lately it has been more mild, but more often, and it hurts and makes my vision blurry. Is that possibly sixth nerve palsy from the episodes of pressue? My eye does not turn in from what I can tell. It has before though and sometimes it might just a little if I’m tired I beleive. I remember my mom saying so years ago and I thought so in a picture but the eye doctor said it was fine.

My mast cell issues are much better as far as flushing and tachycardia than they were a 1-3 years ago. But the mast cells still trigger the PD symptoms: dystonia, muscle weakness and gait difficulty and some other symptoms.
I was wondering if my reaction to barometric pressure changes could be hydrocephalus though the hydrocephalus is mild the symptoms are severe. Maybe the fluid build up can come and go quickly. But just found an article that says PD causes a sensitivity to barometric pressure change too.

I also have vasospastic disease which is a dysautonomia of the blood vessels much like Raynaud’s. So these issues could be caused by a vascular issue.

Basically if the autonomic nervous system regulates it, it will likely over-react or under-react.

I’m on no medications now. I take magnesium and vitamin D. I’m on a very strict diet (almost ketogenic) and I have gotten rid of chemicals in the house which is the best thing I did for the mast cell issue.
Thank you for your opinion!
Deborah

[Deb]

I have had headaches more this week. I woke up this morning with a bad headache and just realized why after I twisted and my whole back lined up. I had not been able to workout for a while and started working out again this week. I’m using weights and my body is adjusting. That is likely why the muscles keep pulling my back out. I twist and put them back it and they get out again sometimes within hours. I try to adjust it as little as possible but with the hypermobility they slip out easily and if I leave it out, it is very uncomfortable and I will get a headache.
I used to adjust my neck too but then found out I have CCI. Surgery is not an option though I have 2 neurosurgeons that want to do it. My whole spine is hypermobile so locking down some in the neck would just make the others worse. And really it doesn’t give me enough trouble to have surgery. I know the symptoms when it is out (all the normal ones of shooting pains in the arms and hands, headache, sensitivity near the spine) and they are completely gone when it is back in.
My main symptoms that worry me are not coming from my spine. They are definitely coming from the brain. The odd part is that this morning I woke up, stood up and my legs did not try to drop me. I am doing better today and I have the worst pressure headache from my back being out last night. So that makes me wonder now if the pressure might not help with the PD symptoms. PD is a problem with synaptic communication. Could pressure help that?
It is interesting too that yesterday I got a lot going. My mind was in high gear despite the headache and I got some work done in the yard when I have been falling down too much to do it. I blacked out a number of times and was rather POTSy but I was strong enough to get out and do some stuff.
So on my best day in a month, I had a pressure headache.
It’s a crazy illness we have.

[Deb]

I think I have found my own answer after all this time. Once I started searching the Parkinson symptoms and then the differentials, I found MSA-P. It is Multiple System Atrophy with Parkinsonism.
This describes me so well it’s scary. I am going to contact the MSA neurologist Monday.
I would rather have Parkinson’s Disease. At least it generally has a normal lifespan.

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