ALS Support Community

Hello. I have an appointment at neuromuscular clinic tomorrow and on Wednesday I'm going to see my pulmonary doctor, so I let you know what the news will be. I've seen 5 neurologists so far but no one did whole body EMG. I'm very concerned about my FVC going down. Even though I asked my last neurologist specifically about respiratory onset ALS, she said that she has never heard about it.

Hope your tests went OK. If it makes you feel any better, I have similar as you along with other symptoms. But full body EMG was clean, including back. But shortness of breath, muscle pains, twitching, etc all continue.

Any luck at your NM specialist and pulmonologist? I have my own Monday, happy to share any answers since we sound similar

Hi. My pulmonologist says that my tests are better than two months ago. Iade a mistake when I wrote about MIP and MEP results. My pulmonologist never did that. I had MIF and MEF those are different, and they were bad before.

Hi. My pulmonologist says that my tests are better than two months ago. Iade a mistake when I wrote about MIP and MEP results. My pulmonologist never did that. I had MIF and MEF those are different, and they were bad before.

So my FVC went up from 92-96% likewise my FEV1 from 82-86%. However, pulmonologist didn't use diffuser, which is also a different type of measurement called TLCO SB, because he said it wasn't needed /there I had FVC 89% and FEV1 82% two months ago/, so I have no idea what those would have looked like now. Basically, he said I don't have even mild obstruction and everything came back to normal.

I plan to go for MIP/MEP tests, but they are not standard tests in Slovakia, so I need to look up where they perform them. Also I need a recommendation from doctor for such tests. My neuromuscular doctor said that she has never seen one case of ALS in 25 years which would start in respiratory muscles. She didn't convinced me anyway, since here nobody does PFTs for ALS patients.

In December, I should go for another EMG. The point is that in my country no one does thorough and whole body EMG. All neurologists test only limbs, not even thorax, neck, throat or tongue.

When I was in Berlin this August, doctor tested my hands, legs and one muscle on my thorax from the back and that was it. Also, neuromuscular doctor didn't see fascics when she was performing examinations so she told me that it is very probable that she won't catch fascicultions on EMG since they are migrating.

However, on the arch of my right foot I have twitches already for 5 months but they come and go. I literally have to tap my foot several times so those muscles start twitching.

How are you doing? Did they catch your fasciculations on EMG? And my dyspnea lasts, I feel it while talking or eating even when I am in the swimming pool and water is up to my neck a I feel like It suffocating.

Sorry to hear you are still trying to figure it out. I have the twitches in my foot arch and also calves mostly. They are worse everywhere after doing things for sure, and my EMGs have been totally clean. Short of breath most of the day and night, though mine is strange as I can lay on my back without being unable to breathe.

I certainly have respiratory muscle fatigue but clean EMG (legs, arms, tongue, paraspinal, hip, and thoracic) so many are confused, and Im early 30s so respiratory ALS would be extremely rare. My FVC is low 80s but not declining at all in 6 months.

I see a neuromuscular specialist here on Monday - Ill keep you posted as to what they say. PFTs are still normal though low end of range, but certainly doesn't explain the dyspnea. Getting a muscle biopsy soon for potential mitochondrial or metabolic issue.

I'm glad that your EMG is clean and FVC is not changing. Let me know.

Nothing of note came from the meeting with NM doc. My exam is normal and thus far so is EMG. Cardiopulmonary test is not; they are having me see a neuromuscular pulmonologist doctor to run some tests and muscle biopsy first week of December. How is your situation? Any improvement in breathing and what are your next steps?

I'm waiting for my EMG appointment. It should be done sometime in December. Breathing still the same but I'm concerned about my right foot. When I wear a sock or shoe it irritates me and feels weird, mostly in the foot arc, exactly where my twitches are. What muscles will you get biopsied? Also do you have like vibrating or buzzing feeling in feet?

You said that your CDP is not good. What was wrong? O2 and CO2 levels. Do they suspect something cardiological or no?

They are doing my deltoid, its what the doctor wanted. I don't have a buzzing sensation however. My tidal volumes are quite low along with Peak VO2. I (think) its saying Im not getting air in and out sufficiently and not getting oxygen to my muscles as I should. Doing the heart workup now however EKG and Echo normal thus far. Doing heart CT scan next too.