Unilateral Diaphragm Paralysis

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Buckytm

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I am a 50 year old male. Until this past September I would have said I was in excellent shape for someone my age. I worked out 6 days a week, ate well, and took overall good care of myself. I started feeling like I had bronchitis and after a run could not catch my breath at all. I went to my PCP. They did a chest X-ray and found I had an elevated right hemidiaphragm. They gave me some meds and told me if I wasn't better to come back. I didn't improve much. I have a personal friend that is a pulmonologist. I visited them and they said the lungs had cleared up but the diaphragm was still elevated. We did a sniff test and it confirmed that it was paralyzed. They did a series of blood work and found everything normal. My CK, thyroid, nuclear antibodies all good.

I went to my PCP and they did an extensive blood analysis and the pulmonologist set me up for a cervical MRI. Which revealed severe forminal stenosis on C3, C4, C5 (more severe between C4 and C5). I was then referred to a neuro surgeon who said while damage was present he didn't think it was enough to warrant surgery. I explained I was concerned it could be ALS. He checked my grip and some general muscle test and performed the Hoffman test. He said he didn't see any signs of ALS, but that he would refer me to a neurologist. I have an appointment with them on April 4.

The more I read the more concerned I am that this going to be, in fact, ALS. Here are my questions: Does anyone else have a history of unilateral diaphragm paralysis? And I think my right bicep is experiencing atrophy along with my right trap. I am literally scared to death. My wife passed away 2 years ago and I am all my son has left and I am despondent thinking I am about to leave him with no one. I can't function daily and it is impacting my day to day life in ways that I could never have imagined. I am consumed that the diaphragm HAS to be ALS. My lung functions are about the same as they were 6 months ago, but not better, static.

Would respiratory functions progress at this slow of a rate or would I have seen more decline? Any information is helpful. I worked for and with Ted Harada at FedEx and knew him well. I know he made great strides in ALS and want to help anyway I can. I am super upset and would appreciate any guidance or information you share. Finally, I have zero strength loss. I can still lift at the levels I always have. Would atrophy come before weakness or is it the other way around. I appreciate any information. I am searched out.

Has anyone had paralyzed diaphragm as the presenting symptom of ALS?
 
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Nikki J

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Stable lung function is a very hopeful sign. As you know there are multiple causes so it doesn’t have to be ALS. Respiratory onset is rare and usually fast.

weakness in ALS usually precedes atrophy by a good margin.

Ted was a great guy with a unique story.

I know it is stressful but April 4 is only 12 days away. Please let us know what happens.
 

Buckytm

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Thank you. Ted and I were the same age and our career paths mirrored each other. In fact, he took over in Atlanta for me. I am seeing signs every where now. My right bicep, my right trap, my right thigh, my neck everywhere. I have actually gained about 3 lbs which I am told is a good sign, but I remember talking with Ted and how things affected him. I can't tell if the atrophy is ALS related or from decreased workouts. Also I am left handed so it is on my non dominate side. I have never been so terrified and felt so helpless in my entire life. Thank you for the information on this board and the support.

Has anyone else ever had diaphragm paralysis as the only onset symptom?
 

lgelb

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There are rare cases reported, but the paralysis is typically to the extent of needing immediate respiratory support (BiPAP). That yours doesn't fit that profile is reassuring. Also, most have been bilateral in onset. I didn't find any cases in PubMed that matched yours (unilateral, not needing immediate support) that were the onset of ALS.

A brachial plexopathy is one possibility, in which case there should be gradual improvement.

As to the atrophy you perceive, seeing a doc at baseline can help you track the extent to which that is true. Unilateral atrophy on the scale and timeline you describe with no loss of strength would be rare in itself and exceedingly rare, if not impossible, in ALS.

Best,
Laurie
 

Buckytm

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As I have grown so emotionally connected to several people here and the reality of this terrible disease, I wanted to update everyone on my visit with the neurologist yesterday. First, he is well respected and came highly recommended from my PCP, my pulmonologist, and the neuro surgeon. He was incredibly blunt and direct, but in a very compassionate way. Here is what the diagnosis was.

He reviewed my labs, my neck MRI (briefly) and then performed what he referred to as a Neurological Physical Exam. He asked me to remove my shirt and socks (?). He then checked my mouth, not specifically my tongue (IMO) but my jaw, my tongue and my mouth in general. We then did some reflex testing and what not, but from my laymen's perspective, not anything "cutting edge" (perhaps I was expecting too much). We discussed my timeline and symptoms. Conclusion was he said ALS was not in play. Thankfully and praise the lord. I admit I was relieved, then I felt so much pain for everyone that is conflicted with ALS. That all being said, he said that he believes my issue was viral diaphragmatic palsy. In fact, he said while not super common, it is not exceptionally rare either.

All that is wonderful, but perhaps because of Dr. Google and all I have read, I am still concerned. Could any neurologist make that assessment without an EMG. I mentioned an EMG and he said there was no need for that, but rather he wanted to do a NCS on my right shoulder (my paralyzed diaphragm is on the right) and he was concerned that I may have other nerve damage causing slight atrophy in my right scapula region (again, he said he couldn't clearly see it, but wasn't sure he didn't either...not sure I understand that). He is scheduling a brain MRI and the NCS, but he couldn't get me on schedule for a month. Again, he said it was not urgent.

I don't want to be insulting or inconsiderate of those that have a positive diagnosis. I am praying for each and everyone that has been affected by this daily. In fact, I lost my wife very young to breast cancer and have been trying to support that cause. I am now going to begin spending more time and money supporting ALS and the seek for a cure. My question is, sadly, do you think any of this sounds plausible? I am trying to accept what he said, but I am still fearful. Maybe it's to early to pick up on it, could he be wrong, did I not explain everything properly. Am I just paranoid and IF he is so sure ALS isn't in play why more test? Another MRI (honestly, I have not had a brain MRI, just a neck and CT of neck and chest. This whole experience has been overwhelming and I have researched myself into paralysis to some degree. Any thoughts or comments would be greatly appreciated. Thank you to all the wonderful people that have answered my questions and help me try to understand what this process is like.
 

Nikki J

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The tests he ordered are looking at other things. His exam and your history and whatever tests he reviewed all ruled out ALS for him which is awesome. He further made a diagnosis and is just confirming that other things in his differential diagnosis are not in play. He could easily have ordered an emg if he felt any need. He obviously did not.
neurological clinical exams are not fancy or dramatic and a normal one will be done quickly. He was also observing you during the whole encounter. This doctor was recommended by people you trust. Try to trust him to do his job.

thank you for your kind words
 

Buckytm

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Thank you for that. I would really like to continue to help in this cause. Do you have any suggestions on how to become more involved and what I can do to help. I understand the funding side. I have some associates that are Managing partners of some private equity and I want to help spread this to them and everyone else. Any ideas where I can help are welcomed. I will update again once I have the MRI and the NCS (in a month :(..) Please let me know if I can help anyone or do anything. Take care and god bless you.
 

Nikki J

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Funding continues to be critical. There are advocacy needs as well but sometimes it is bad for someone who has had ALS worries to get too involved. IAMALS dot org does advocacy education and fundraising. There are many other organizations of course. And donations to ALS medical centers can help too. Emory is in your area. Mass General which is in mine has done amazing work when they got a large group of donations that started the Healey Platform trial which we hope will be transformative. I am not the only PALS who has been disappointed by ALSA. Some chapters are better than others but they all have to give a pirtion of their donations to national.

do please circle back after your work up. In the mean time enjoy life
 

Buckytm

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I am back with an update. I had an EMG, NCS, and Brain MRI. They all came back normal. The neurologist stated it was not ALS. I am so thankful, but admittedly, still concerned. What if everyone is wrong and its too early. I have never felt anything like this before. I literally have been consumed with thoughts of ALS and unbelievable grief for everyone that is suffering this dreaded disease. Often on here I read that you have to trust the dr. My neurologist has diagnosed a lot of ALS (assures me his competent) but I just wonder that my physical appearance impacts his diagnosis. I am still very fit and can do most things I have always been able to do. I simply have a paralyzed diaphragm that makes running very difficult.
Here is my question. The EMG was completely normal, however; he only did one side of my body. Is that normal? The NCS was normal (though it did show slight carpal tunnel in my right hand) which is not unexpected due to work and the fact I broke that wrist and hand two years ago. Could an EMG (and all OTHER test be normal) and somehow they are just missing ALS? Is it too early in the disease? I want to feel better and focus my energy on helping others, but I still can't get the ALS thoughts out of my head. Is that normal? Or am i completely insane? As always, thanks for any input or thoughts you may have. I pray for everyone affected by this dreaded disease daily and want to get involved in helping find a cure. Please let me know your thoughts or suggestions on how I can help.
 

Bestfriends14

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Congrats on having no ALS! For the record, you do not have a paralyzed diaphragm. If you did, you would be on non-invasive ventilation 24/7 and unable to do the things that you purport still being able to do. In your case, the EMG was not done too early and one side of your body is enough. It sounds like your doctor, who was very thorough and is an ALS expert, could not quell your fears. For that, I am sorry. I am not sure what other pieces of information you need in order to no longer fear a disease you do not evidence having, but I suggest you have a discussion with your neuro to see if he can give you suggestions on how to let this disease go. I am not saying that there is nothing wrong, but you are not describing ALS at all. Do keep working with your docs to see what their thoughts are.

How you can help is to let this disease go and live your life, being grateful for the health you have, and focus on your son. I cannot tell you how many folks come here month after month, year after year, fearing ALS when they simply do not have any symptoms to support their beliefs. Please, do not be those people. Go live the life you are so blessed to have.

Good luck to you and take good care.
 

Nikki J

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All of this is great news. I do understand you have been diagnosed with a unilateral paralyzed diaphragm. However I am sure you were told it can be from many things including a virus and yours was in the setting of bronchitis you said.
a screening emg on one side is utterly normal procedure.

it is not uncommon to have difficulty letting go of the fear of ALS especially when you have known someone with it. However, you have had normal tests. Your one abnormality the diaphragm is not uncommon and has many fairly benign causes. It would be an exceedingly rare ALS presentation ( I have never encountered a PALS for whom it was an initial symptom). You now have tests and an expert telling you it isn’t ALS. If you find yourself truly unable to accept this you can either seek counseling support or pursue more tests and more doctors. It is up to you whether you think the latter would be helpful. We have seen people do this and be unable to believe the next doctor …or the next and the next. It makes me sad to see people who have seen 7 or more neurologists ,repeated tests and wasted years of a healthy life. I realize this isn’t you yet. Don’t let it be. In your place I would be out celebrating If you decide on a second opinion ( I would not) be honest with yourself about accepting what it is or don’t even think about it
 

Buckytm

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Thank you Nikki. I certainly want to be respectful of everyone on here and what they are going through. I am just struggling wrapping my brain around all of these test, blood work, dr visit's etc...If I get more test and further medical information I will repost. You have been incredibly kind. Everyone on this board is in my prayers.
 

Clearwater AL

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Bucky, your 5th post first sentence...

"I am back with an update. I had an EMG, NCS, and Brain MRI. They all came back normal.
The neurologist stated it was not ALS. I am so thankful,"

Key words... The neurologist stated it was not ALS. They all came back normal.

An EMG, a NCS and a Brain MRI. Even a Brain MRI. All indicated.... NO ALS.
All done by highly educated, highly trained doctors.... you're not.

What more will it take?

If you do get more tests further indicating no ALS I hope that will finally post
your mind to rest concerning ALS. There is so much life ahead of you where
here.... so many don't have that future. I hope your other health issues get
resolved so you finally find a path to good health.

Thanks for your prayers... believe in the ones for yourself.
 
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