Old 04-10-2018, 06:49 AM #16 (permalink)
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Default Balance issues

Hello,

I have a question about balance problems in ALS. When do they start to appear? Are they a result of weakening muscles or are they a symptom in their own right? Would it be common for someone to experience recurrent falls even before clinical weakness?
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Old 04-10-2018, 08:17 AM #17 (permalink)
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Default Re: Balance issues

Hi Emanol;

My PALS had two major falls long before her ALS diagnosis. On the last one she broke her pelvis. You will also find post on this forum with similar stories. If you are having unexplained falls see a neurologist and get a professional opinion.

Don't know whether my PALS falls were caused by muscle weakness or something else but at the time we never suspected anything like ALS. Tripping on the garage stairs and later an exposed tree root in the yard. We now suspect these were a part of her ALS. Wish we had seen a neurologist at that time.
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Old 04-10-2018, 11:31 AM #18 (permalink)
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Default Re: Balance issues

If it is ALS, there may be weakness before diagnosis or maybe not. There is no one true path in ALS, someone may fall some and another may never fall. If you have weakness, I would encourage you to see a doctor and probably a neurologist.
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Old 04-10-2018, 08:05 PM #19 (permalink)
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Default Re: Balance issues

I’m not a Dr. but here is my opinion. I was tripping and sometimes falling before I realized my legs were getting weaker. My wife had noticed I was dragging my feet. That was the early stages of foot drop. Muscles weren’t atrophied then, I don’t think, but I could not rotate my foot up at the ankle as I walked so my toes would catch on cracks in the sidewalk or in the grass and I’d trip. I noticed my balance problem during a visit to the VA. They were building a new wing to the hospital and had a crane on top of the building. Like any kid, I had to watch. Looked up at the crane, maybe 8-10 stories up, and promptly fell over backwards. Did that a couple more times watching airplanes (I’m a retired pilot). Think how balance works, fluid in your ears moves hair like structure which sends a message to your brain telling it you are leaning forward or backward and your brain sends a message to your muscles to counter that movement. Frequently that means putting a little pressure on your toes or heels to right yourself. With ALS, that signal doesn’t reach the muscles that make that happen and over you go.

The VA gave me AFO’s (ankle foot orthotics) which helps the tripping but doesn’t really help the balance. Now I don’t look up much anymore unless I’m holding on to something.

Bill
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Old 04-10-2018, 08:08 PM #20 (permalink)
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Default Re: Dad's Symptoms after Parkinson's Misdiagnosis

Mod note: Merged threads to make sure all history is kept in one place to make it easier for members to see the whole picture and provide best comments.
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Old 04-10-2018, 08:15 PM #21 (permalink)
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Default Re: Dad's Symptoms after Parkinson's Misdiagnosis

Both constipation and urinary urgency are secondary symptoms of Parkinson's.
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Old 04-11-2018, 07:41 AM #22 (permalink)
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Default Re: Dad's Symptoms after Parkinson's Misdiagnosis

Thank you everyone. In fact, I am aware that my dad's symptoms fit Parkinson's quite well, which is why I was surprised when the imagining ruled it out. We saw three experienced neurologists here in Spain and all of them diagnosed Parkinson's confidently (one of them referred to this as a "textbook case" of Parkinson's) It was because of our insistence, once we saw that levodopa made no effect, that they agreed to do several other tests (EMGs, ACT, blood tests, scans, etc). It was only after a while that we were able to do the imagining, and when the results came out negative the doctors were quite shocked, unsure as to where to go next. This is why I am quite confused, and why I am seeking all the advice and information I can find...

Does any of you know whether neuroimagining is completely reliable? Again, I was under the impression that there was no definitive test of Parkinson's that could ultimately rule out the condition, yet our doctors have told us that Parkinson's is no longer a possibility.

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Old 04-11-2018, 09:45 AM #23 (permalink)
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Default Re: Dad's Symptoms after Parkinson's Misdiagnosis

https://www.mayoclinic.org/diseases-...t/drc-20376062

This is from Mayo Clinic and may answer some of your questions. I would ask the doctors why Parkinson's was ruled out. Most likely it could be that medicine taken over a long period of time showed no improvement.

We really only know ALS here so I would call the doctor and ask questions.
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