Parkinsons? Or not?

[Mo51]

My husband Peter has had a cervical spinal cord injury for 11 years now. This badly affects his mobility, upper body and hand function. He suffers from spasticity and very tight muscles. He can walk with aids but uses a wheelchair outdoors.

Some months ago he started getting dizziness/lightheadedness and generally took a downturn mentally and physically and also had a few falls. Long story short as I can - his GP thought possible PD as he certainly has parkinsonisms like a low blink rate, facial masking, drooling, even slower than usual gait. His BP has always been lowish but had dropped to some very worrying levels. Initially they blamed the falls on his low BP but after fludocortisone to higher it he was still lightheaded/dizzy and having falls.

After many tests and MRIs they found cerebral small vessel disease (silting up of the brain's blood vessels) and also possible deterioration in his cervical spinal cord. This makes him very complex to treat we are told. But - GPs money was still on PD and he started him on very low dose levadopa (sinemet) which made him feel very much better after a few weeks and reduced the dizziness/lightheadedness by a lot, though it was still there sometimes. But his BP was still very unstable. Ranging from 78/55 in the mornings to 180/85 by late evening. A few days ago Peter saw a Neurologist (who he has previously seen and who was also inclined to think PD the culprit) but the Neurologist has now said that he is "pretty sure" that Peter does not have PD and that the good effects of the sinemet were "placebo and dopamine kicks". He now thinks that the new symptoms/parkinsonisms may come from the cerebral small vessel disease.

So - he has instructed slow withdrawal from the sinemet (not least because of the dangers of the fluctuating BP). But - even reducing the sinemet from 4 times daily to 3 times daily has brought the lightheadedness back with a huge bang. It's all very confusing and worrying. Obviously we prefer that Peter doesn't have PD but at least there was a drug that helped and a recognised path of treatment. Peter's pinal cord injury in some ways mimics and also masks PD. Does anyone have an opinion/suggestion etc. We are seeing Peter's GP in a week or so and he is finding this as frustrating as we are and not sure where to turn next. So I am looking for some advice please. Thanks in advance and apologies for a comlicated and long post.

[park_bear]

Never any need to apologize for a detailed post! It is the cryptic ones with a few sentences asking for help that are deficient.

This high – low blood pressure pattern is typical of orthostatic hypotension - loss of blood pressure upon standing. This is the result of impairment of the fast acting postural blood pressure regulation system. This can be caused by a variety of neurological deficits. Parkinson's is one possible cause.

There is also a slow acting blood pressure regulation system that operates over a period of hours. During the day when the patient is not lying down the average blood pressure is too low. As result it slowly rises during the course of the day and peaks in evening. At night when the patient is laying down blood pressure is now too high and slowly drops. It reaches its nadir upon waking in the morning.

To compensate for this he can drink 1 quart or liter of isotonic saline first thing upon arising, when is blood pressure is at its lowest ebb. This should only be done in the early morning. Isotonic saline is made by adding 8 grams of salt to 1 quart of water, or 9 g to 1 L. That raises the blood volume and therefore increases blood pressure. Plain water does not work very well because the kidneys will excrete it rapidly. If you try this check his blood pressure after the saline has been absorbed to make sure his BP is not too high.

Since the levodopa is helping him I believe it is wrong to abandon it. On rare occasions patients get a high from excess dopamine but usually all kinds of discomfort arises from excess. In any event, relief of symptoms does not qualify as "dopamine kicks" and no one, much less an MD, should be confusing the two.

Moreover: newsnetwork.mayoclinic.org/... "If symptoms substantially improve when a person takes carbidopa-levodopa, that’s usually a clear sign that Parkinson’s is causing those symptoms." My advice: fire the neurologist and stick with your GP.

[Mo51 in reply to park_bear]

Thanks Park_bear. That's a really helful reply. I understand what's going on with Peter's BP a little better now.

[Tinobambino]

I had spinal cord injury seven years prior to my Parkinson’s diagnosis. My diagnosis has been for nine years. The first three years I controlled the symptoms with muccuna and exercise. I originally went to a Atlas correction chiropractor. Great help. I learned that my head was tilted to far forward and out of alignment. Atlas is C1. If your head is not on straight nothing flows properly including the much needed neurons in the brain coming from the G.I. vagus nerve. This year, I had a full spinal x-ray and found that the head again is tilted forward cutting off some oxygen through my brain stem. I am currently working with a Nuro chiropractor. Having great results. In addition, I am rebuilding my Mitochondria in my brain through near infa red light therapy.

This is relieving some symptoms for me and for my husband who has dementia. We are using via light device.

Advice: listen to your own intuition. Pray for guidance and wisdom. Exercise.

[fnedorez70]

mom. First, your husband obviously needs ,a good neurologist preferably a movi,g disease specialist. I based on my experience would suggest to ask for the datscan. This test would show the deficiency of dopamine.. I also would do a genetic test to see if your husband has mutations associated with pd

[HugoRipanykhazov]

What is the spinal injury? I had that and a lot of the symptoms you describe went away after fusion surgery! But if he does not have stenosis or something like it, I cant imagine anyone would recommend spinal fusion.

[Mo51]

Hi - apologies for delay in replying. Missed your input. Peter had stenosis at C4-C7 but when operated on to decompress, his symptoms got worse not better. He came out of surgery paralysed down one side and the weakness in the other side was worse. That was 10 years ago and he has made some progress in that he is no longer paralysed down his right side, but is still substantially weaker.. There is also some myelopathy (softening of the spinal cord) which has developed over the last 10 years. Spinal fusion has never been an option that has been mentioned to us. From what I have read in the last week I think the problem has been that many of the symptoms of his SCI are similar to those of PD. Also I have read that the cerebral small vessel disease can cause Parkinsonisms. All very confusing. He is coming off thr levadopa now and so far is doing OK.