Old 02-10-2019, 09:00 PM #1 (permalink)
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Default I have to rule out ALS

My story starts in Feb 2018. During an xray for shoulder pain they discovered my left diaphragm was elevated, but they didn't bother to tell me. They gave me painkillers for shoulder bursitis.

I complained to my PCP in Sep 20108 of constipation. She ordered an abdominal CT scan that showed the elevated left diaphragm. It was only when she told me that I even learned I had the condition.

I was sent for a SNIFF test which determined my left diaphragm is paralyzed. Pulmonary function tests in Nov 2018 revealed a FVC of only 57 percent and that was sitting up. They never tested me lying down.

My PCP at the time was horrible, and I demanded additional CT scans of head and neck after she ordered a CT scan of chest to rule out lung cancer. I saw a thoracic surgeon last November who reviewed my scans and said they didn't look bad. He shrugged his shoulders and considered it idiopathic. He offered plication which I declined. It was evident he was not interested in chasing a diagnosis.

I tried to convince myself it is from Parsonage Turner Syndrome and there is a chance of recovery as some have had from that condition. It has been at least a year already, though, so chances are becoming slimmer all the time.

Just about the time I got over my fear of that I developed worsening bulbar symptoms a week ago. I have actually been clearing my throat chronically for a year now right around the time of that xray that showed the elevated diaphragm.

It is harder for me to clear mucus from my nasal cavity down into my throat. I have a constant need to swallow throughout the day. I am noticing my saliva build up and have to consciously swallow it with effort. When I eat and drink, mostly drink, I often have a need to gently clear my throat right after swallowing.

The scariest starting last week was that for the first time in my life there have been many instances in which I cannot swallow when I try. I start the reflex but get stuck so I back off then try again.

When I clear my throat now the secretion comes up but it starts to go down my trachea so I have to gently cough it back up again and force it down the esophagus. At times I have had to use the chin tuck or another postural gesture to complete the swallow.

I told my GI specialist about this so he is going to add an endoscopy to check my throat and esophagus the same time he does the colonoscopy this Friday. I didn't realize how hard it is to see a neurologist. I am in Phoenix AZ.

I called Barrow Neurological, but they told me I have to be referred there by a doctor even though my insurance does not require referrals. I called HonorHealth for a specific neurologist I wanted to see. They told me I had to submit all my records to them for review first then they will assign a neurologist based on my records.

The last thing I will say about the swallowing is that the most trouble I have is when trying to swallow mucus or saliva. When I eat and drink it seems normal for the most part except for minor throat clearing and what I sense as nasal regurgitation. I will keep you posted on my progress.
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Old 02-10-2019, 10:21 PM #2 (permalink)
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Default Re: I have to rule out ALS

I'm glad you are getting the endo. If indicated, I'm sure a specific swallowing study will be ordered, and/or an ENT referral. But I would not presume as yet that the increased swallowing difficulty represents bulbar damage.

You don't ask, but since your breathing appears to have been stable in the year since your discovery of the partial diaphragm paralysis, this doesn't sound like ALS, or PTS.

Keep us posted.

Best,
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Old 02-10-2019, 10:39 PM #3 (permalink)
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Default Re: I have to rule out ALS

Hi Anthem. I’m a retired physician with an internal medicine background. Paralysis of one side of the diaphragm is not that uncommon and often shows up as an incidental finding on a chest X-ray. I’ve seen a number of these during my career, and ALS was never on the table with any of them.

Most cases are due to injury to the phrenic nerve, and it may be viral or related to a neck injury, or inflammation of the brachial plexus. Prognosis is generally excellent.

As Laurie notes, you had this discovered a year ago. If you haven’t had progressive respiratory dysfunction since then, then ALS is not a worry.

Most likely your swallowing and secretion issues represent another issue. Good that an endoscopy is planned. Swallowing issues have many possible causes with ALS being at the bottom of a fairy long list.

If you have had issues clearing your throat, you may have post nasal drip or chronic gastroesophageal reflux.
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