Status
Not open for further replies.

MoniqueM

New member
Joined
Oct 22, 2017
Messages
8
Reason
Learn about ALS
Country
US
State
MI
City
Waverly
Hello, read your notes and thank you all for this group. I would appreciate responses, I have been having back pain, no signs of damage on MRI, Dr recommended a CT angio as I have a history of blood clots, came back clean but referred me to pulmonologist. Pulm did a PFT which came back at 74%, noted my posture was off & recommended seeing Neuromuscular specialist based on this & that I had been twitching. Saw neuromuscular specialist & MND was mentioned, did a work up & another PFT and I came in this time at 77%, they said I have a tounge tremor, otherwise nothing concerned NMS on phys exam, we then did an EMG and all came back clean, the NMS said no als. Since that visit I have developed a dry cough & my uvula is twitching to the left, I never asked him about the PVC being so low and any concerns with ALS, but with the cough and uvula twitch I am concerned that something is wrong and possibly missed, do these symptoms sound concerning for ALS, thinking of reaching back out to Dr., but he has long track record with ALS at a Univ Hospital & want to believe the EMG results & his word.
 
I see no reason to be concerned about ALS. For detailed discussion, see the sticky post stuck at the top of this forum called "Read before posting."
 
Thank you and I read the notes, my question is in regards to respritory onset, I have a clean EMG which I trust, but my breathing issues concern me, the Dr. said that Respritory, albeit rare, can happen and would take longer to diagnose. The symptoms I have had were 2 PFT tests, second test was better than the first 2 weeks weeks later as noted above, I have had trouble sleeping flat, waking up multiple times a night and last night waking up gasping for air, very mild cough for 9 months which seems to have stepped up, the need to clear throat frequently. These things concern me, but up until my first PFT I was sleeping 7 hours a night, some of the best sleep I have ever had, do things change this quickly? Or could the sleeping be anxiety? In reading the notes my takeaway is that my EMG which tested 3 limbs & my back, should have shown something. Though I have read that Resp onset can be going on and yet a clean EMG... I asked the Dr. if the respiratory issues change her statement of no ALS and she simply responds that Respiratory would take longer to diagnose, not really answering my questions. Do these symptoms sound like they could be Resp onset, would you all be concerned or move on? Thank you
 
I would go back to the pulmo and maybe ask for an ENT referral. A FVC of 74% - 77%, assuming that's what you mean by PFT, may suggest a need for further workup, assuming you don't smoke, don't have cancer, asthma or COPD. A clot or bleed missed by the angio is another possibility. Sleep apnea is also on the table--
did anyone ask you about daytime sleepiness?

But without knowing the rest of the numbers, it's not possible to say that the differentials might be.

Best,
Laurie
 
Thank you, I have nothing else that you mentioned not a smoker etc., my readings were FVC 75% and FEVC 81% and I inhaled 4L of air, I have had a thoracotomy for a prior surgery 12 years ago and do have a band of scar tissue that runs along the lower left ribs towards my stomach that is tight sticks out along my upper left abdomen, it is tight and I have asked physicians before what it is and no one knows. I do have daytime sleepiness and have thought about a sleep test in the past, I swim for exercise and have never felt short of breath where I was gasping, obviously I get tired as I swim 1000 yards/day, 3 times a week, I can also job around the block without stopping but again when finished am breathing hard, I do have a BMI of 37, I am hopeful that a combination of these things is causing my numbers, up until the breathing test I never questioned my breathing. I think a call to a pulmonologist is a good idea, but wish my Neuromuscular Physician would be more proactive, it almost feels like they wait for you to show symptoms, Comments welcome and thank you
 
"almost feels like they wait for you to show symptoms"

Yup.

"would you all be concerned or move on? "

Move on. Good luck to you.
 
Ok, so with an EMG of 3 limbs and back and no sign of MND, the neuromuscular specialist tells me she see's BFS then despite the FVC readings and coughing, which I made her aware of, based on your knowledge your saying I should move on and not be concerned with respritory onset? Laurie, any comments with my readings I posted bove?

One other question, my coughing feels as if it is caused by throat irritation or post nasal drip, when I take a decongestant it is better but still feels irritated and dry, could this be throat spasms due to ALS causing this or does slurred speech, voice change and tounge issues come first, none of which I have? And are the throat issues considered more bulbar related than respiratory symptoms? Just trying to understand if the coughing and nasal drip are symptoms of ALS.

I am going to reach out for another pulmonologist appointment. Last, Mike you said yup to my question that Dr's tend to be reactive and not proactive, am I correct in your response?
 
Based on what you have said, a sleep study would hardly be a stretch so I would ask the pulmo about this. Meanwhile, you can download a free app to record your breathing at night on your phone and see if there is choking, gasping, breathing thins or stops.

With obesity and scar tissue along muscles that move with breathing, coupled with a clean EMG, a mechanical problem with your breathing itself is a thousand times more likely than ALS.
 
Thank you Laurie, they have scheduled me an appointment with a neuromuscular pulmonologist who the neurology team works with, he specializes in sleep apnea & overall breathing solutions. I am hopeful that my EMG and the Neuromuscular Specialist were right in not finding any signs of MND. If ALS were causing my breathing to decline to 75% I would hope abnormalities would have shown up elsewhere by now on the EMG?? I am hopeful is this my weight and rigid scare tissue that prodrudes along my left rib cage. Are the cause. I will update you after my appointment
 
In the meantime, be assured that the EMG finds problems well before the problem shows up as an observable symptom.
 
I apologize on posting again today but I don't know where to turn, I went to swim last night and really struggled with my breathing, I completed my swim in near normal time but felt more tired physically and was breathing much harder, I am frustrated as I have a clean EMG but am having lung issues, no weakness anywhere and people tell me including my neuromuscular specialist that I do not have ALS, but there are only certain things that could be affecting my lungs, then I think about my family which I know you all have had to do and I am sad, I see the pulmonologist tomorrow, very anxious & hoping it goes well. No real question, just thankful you all are here....
 
I have a question, for those with respritory onset or those that have had the disease affect your respritory system, have you experienced swelling in the areas of the ribs that become affected, I have an area of my left rib cage that is swollen in the back, it bumps out as compared to the right side, do the ribs swell as they denerve?
 
All we can say is that, as Laurie says, other things are far more likely

Respiratory onset is rare and I can only think of one current member who has it. He does not generally answer/ read this subforum as he has his own challenges to deal with I believe the answer to be no. It does not make physiological sense. Leg swelling is seen sometomes as a function of blood flow / inactivity/ gravity. This would not occur in the ribs.
 
Thank you Nikki, I have no weakness anywhere, just the breathing issues and the swelling on the left side of rib cage and pain around rib cage to my back & up to shoulder, I have read that pain is not a presenting symptom in ALS, is that true hoping odds are in my favor, but the coughing, clearing throat and FVC weigh heavily,
 
You're really putting yourself through a lot. And you're ignoring the knowledge offered by knowledgeable people, including MDs.

"there are only certain things that could be affecting my lungs,"
Did YOU decide this? I don't think you've gone to med school at all, so it's pretty arrogant of you to say you have knowledge all your doctors do not.

"the coughing, clearing throat and FVC weigh heavily,"
Weigh heavily on what? Not ALS.


To fix what ails you, I would suggest asking your doc to treat your anxiety.
 
Status
Not open for further replies.
Back
Top