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Old 09-02-2014, 10:47 PM #1
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Default 2 questions: breathing and vision

My husband has been diagnosed with PLS. He also has sleep apnea and was recently prescribed a cpap. I would like to know if breathing issues are common in PLS. I thought maybe breathing was only affected in ALS. Is there a typical breathing progression? When he is lying still without the cpap he takes very shallow breaths- mostly only the abdomen moves and his respiration rate is typically in the mid 20s. His sleep study was last month so either they didn't catch this or it was no cause for alarm. Does it sound like typical PLS breathing problems? Or maybe the beginning of breathing issues?

Also he had a routine eye exam. The Optometrist stated that he has end point nystagmus which is attributed to extra ocular weakness in both eyes. I thought the eye muscles were spared in any motor neuron disease. Has anyone else had eye weakness, double vision, etc?
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Old 09-03-2014, 07:21 AM #2
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Default Re: 2 questions: breathing and vision

Breathing problems are not limited to ALS, they are very much present in PLS as well. PLS progresses very slowly, though, and breathing usually comes at the end of a limb onset (the most common kind of onset). With many people not getting PLS until their 50's, many never live to see that part of the disease!

Just as ALS has bulbar and respiratory onsets rarely or other variant progressions, PLS does as well. Whether your husband's breathing problems are PLS related is something that is harder to answer, though. Was he lying down for the sleep study? What did they say about his CO2 levels?

In MND's eye muscles are usually spared, and if they aren't they are the last thing to go. You are right about that.

Two things to keep in mind:

PLS is a diagnosis of exlcusion - there is no "yes you have it" test, there are lots of "you don't have that other thing" tests. It might be worth asking your neuro if PLS is still the best diagnosis.

PLS doesn't make you immune to other things. When you get a new maybe-PLS symptom that isn't classic for PLS, it is worth following up with the appropriate specialist in that realm. Lots of other things cause nystagmus, for instance, whereas PLS generally doesn't.
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Old 09-03-2014, 09:11 AM #3
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Default Re: 2 questions: breathing and vision

Beky speaks wisely.
I know the PLS diagnosis is quite new and last you posted you were waiting for another opinion? I seem to remember there was a question of abnormalities on EMG which is not part of PLS?
I hope you now have a really good neuromuscular specialist. You need to call for breathing reeval and to tell them about the ophthalmologist's findings. They may want explore that issue too.
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Old 09-03-2014, 05:34 PM #4
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Default Re: 2 questions: breathing and vision

Tokahfang,
Yes it was an overnight sleep study so he was lying down. They did not do any blood work or measure carbon dioxide that I am aware of. The only bloodwork I think he has had that would be close to that, was in May and it was bicarbonate. It was the high end of normal range, 29 I believe.
He has been through lots of testing. Just last couple of weeks had another MRI with contrast and also a myelogram to rule out myelopathy. The consulting orthopedic surgeon does see some stenosis/compression, but really does not think it is the cause of his symptoms. He said that he is in his top 10 of weird patients. lol. He also called in another physician and they tested reflexes from head to toe. He was hyperreflexive bilaterally top to bottom including facial and babinski. We thought he only had hyperreflexive patellar reflexes. Legs are weaker than arms, but he can not maintain range of motion actively against resistance, and some movements he cannot do against gravity.

Nikki - We actually had a horrible experience with a neuromuscular neurologist based out of a large hospital who completely wrote him off. We have since found an empathetic private practice neurologist who has been very thorough. She may not be an expert, but she shows genuine concern and in the end, that's what matters most to us. The opthalmologist was going to send a report to her. I will ask about the possibility of a referral to a pulmonologist.

So is there a typical progression or does it vary widely? For instance, loss of diaphragm over intercostals? I bet it is individualized. So much of this disease cannot be predicted.

I also have to say it is quite depressing to search this forum for former PLS posts and discover many of those posters were subsequently diagnosed with ALS.
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Old 09-03-2014, 05:54 PM #5
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Default Re: 2 questions: breathing and vision

It is unfortunately true that the diagnosis of PLS is considered provisional until it has not progressed to ALS for a number ( 4?) of years though if it takes several years to get to ALS then the person is probably a pretty slow progressor!
I am glad you have a neuro you trust but did you ever get the planned other opinion ( at Mayo was it?) he apparently is so difficult to diagnose are you comfortable that everything has been ruled out except for PLS? Is the neuro certain of her diagnosis? It is such a tricky one
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Old 09-03-2014, 09:19 PM #6
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Default Re: 2 questions: breathing and vision

I am as comfortable as I can be I guess. Several thousands of dollars later and there really is no definite answer until autopsy, correct? Shall I list what has been ruled out?
cancers of GI, lung, pancreas, brain and spinal cord
perineoplastic syndromes, myasthenia gravis, west nile, HIV, Lyme, Syphillis, vitamin deficiencies, hormone imbalances, rocky mountain spotted fever, auto immune diseases, myositis, myopathy via muscle biopsy. He has had 2 brain MRI's, 2 cervical MRIs, 1 thoracic MRI, 1 Lumbar MRI, a myelogram, Chest CT, 2 CTs of abdomen and 1 CT of lung.
If he didn't have cancer before hand, all of this radiation is certain to do him in. Ugh!

I guess spinocerebeller ataxia and multiple system atrophy are 2 other possibilities that haven't been ruled out. But that's about all I can think of. PLS would be a better prognosis than MSA.

He has been on a walker since March, which became a 4 wheeled walker in May. He was dismissed from physical therapy because he was only getting weaker. He has not been employed since November. Last summer we were skiing and tubing at the lake and last fall he was hunting. He was an avid outdoorsman and a super busy body. Type A personality all the way. Now he doesn't even drive.

Any input as to my breathing question?
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Old 09-04-2014, 08:13 AM #7
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Default Re: 2 questions: breathing and vision

It could be PLS. With that list of rule outs it is not worth looking for another answer anyhow, you're right. PLS progressions can be fairly unique, and it sounds like your husband has one of those.

Look out for signs of insomnia, particularly if he seems to be getting sleep. That will mean that he is having trouble getting the CO2 back out and needs a bipap instead of a cpap.
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Old 09-04-2014, 12:07 PM #8
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Default Re: 2 questions: breathing and vision

I'm not sure if this will be helpful in that I am also very early in my diagnosis, but I was given a provisional diagnosis of PLS in July with Bulbar onset, not limb onset and I do have breathing issues…they didn't wait until late in the illness, but I also didn't begin with limb onset. I agree with Beky that your husband may need a bipap instead of a cpap if the breathing is related to a neurological cause. That was my understanding as well. It might be worth asking your neurologist about. I am happy you found a neurologist you feel comfortable with.

Jen
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Old 09-08-2014, 10:55 PM #9
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Default Re: 2 questions: breathing and vision

Update -
Last week orthopedic surgeon visit. He assesses hyperreflexia all over, including jaw jerk. He goes over the MRI and myelogram and seems very reluctant to say that the mild stenosis at C5-6 is the cause for his symptoms.

Today at the neurologist. She gets hyperreflexia from the neck down, but does not get a positive jaw jerk. She is more hopeful that it could be the cause of his symptoms and feels he has nothing to lose by having the surgery. She didn't have much to say about the breathing, except that he could still be getting used to the cpap and to follow up with the pulmonologist.

Will this roller coaster ever end? Did anyone else have cervical surgery to rule out PLS?
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Old 09-09-2014, 09:15 AM #10
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Default Re: 2 questions: breathing and vision

I'm not sure the roller coaster ever truly ends for us except in a way none of us is rushing towards. To paraphrase Joel on fasciculations, "any muscle that is still twitching is stil alive!"

That said, surgeons receive special training. If your orthopedic surgeon and neurologist disagree with each other, it seems like a consultation on risks vs reward with a neurosurgeon seems like the next step. Surgery near your spinal cord is never a "nothing to lose" situation unless you are already paralyzed from spinal cord injury to that region!
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Old 09-20-2014, 03:06 PM #11
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Default Re: 2 questions: breathing and vision

Hi, I was misdiagnosed with cervical myelopathy and underwent surgery to fuse c5 and c6 to c7 the surgery was a success and my foot drop improved however my balance got so much worse causing me to fall like a tree and injure my head and face. I obtained a walker but after so many falls,my bulbar muscles became affected. A neurosurgeon I saw for advice ran some tests and diagnosed pls. My symptoms began in 2009 and so far it hasn't progressed to ALS. Now I can walk with difficulty and mostly in a power chair and can hardly speak. I don't know if the falls caused the pls or if it was the surgery that advanced it. They warned me I could become paralyzed with another fall as my balance was bad even before surgery. I read spinal cord injury can also effect balance. What a dilemma, I can't believe how my life has changed.
Did your husband have surgery and if so, how is he doing.
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Old 09-20-2014, 03:18 PM #12
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Default Re: 2 questions: breathing and vision

"Surgery to r/o PLS" is ludicrous on its face. There has to be a more positive indication for surgery. If you never got a definitive entity to blame, what difference would it make? You still treat issues as they arise. You still get your affairs in order. You still live one day at a time. Gosh, this sounds like a greeting card.
Re breathing, forget about diagnoses and see a pulmonologist, get an rx for BiPAP based on CPAP failure -- there are ways to write this up -- you can still set machine on CPAP mode any time but have the flexibility of BiPAP modes. Meanwhile, make sure you're recording sleep data via card or machine, export data, look at it, see what it says, take to pulmo, treat the breathing problems.
Also, anyone w/ am MND or similar should have an adjustable bed so you can elevate head/tilt back/raise legs to comfort, etc. Often upper airway muscles literally need support to work.
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Old 09-21-2014, 10:22 PM #13
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Default Re: 2 questions: breathing and vision

Elliemae

Thank you for your feedback. I appreciate your experience.
Yes he did have the surgery last week. Fusion of C4 C5 and C6. Thre wet no complications from the surgery. He was able to transfer to an inpatient rehab hospital. So we will see. No change in his reflexes - hyperreflexia and clonus still present. He was able to consistently trigger fasiculations in his ankle by flexing his feet and that hasn't change since the surgery. In addition to still having random fasiculations in arms and legs. I suppose if there is going to be any improvement it may still be too soon to tell.

Igelb
I appreciate your advice. A diagnosed is important to me even though other may feel it is futile. It doesn't mean we will ever know 100%, but nonetheless, it doesn't change my feelings.
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