Pulmonary Function Testing done today -- closer to ALS diagnosis?

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Jshemnitz

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Hi All,

I posted before and promised I wouldn't post anything until I had important testing updates.

previous post from August:

I asked my primary care doctor for a referral to get a Pulmonary Function Test and I got 1 done today and some of the results were normal and part of them were not normal which is why I am posting again (attachments below of the summary of the tests) - I am not sure why it's broken out the way it is on 2 pages with overlapping tests but different numbers on the same tests but this is what the lab tech printed out for me; I asked her to do the FVC and FEV1 in both the upright and supine positions so maybe that's why. I have a message back into her to ask exactly why.

Quick recap of my main issues through Aug:
-Weight/Muscle loss that started Dec 2018 (pants, shirts, suits, etc -- all too big on me now.. even to the point where my slim fit pants could fit 2 of my legs side by side in the same pants leg and fit 2 of my arms in the same shirt sleeve side by side
- muscle twitching (mostly legs , back and some arms) -- never had twitching prior to this year in my life
- muscle cramps - mostly feet/toes and fingers -- never had muscle cramps before this year
- perceived muscle weekness (proved to be not actual clinical weekness)

Additional symptoms that got bad the last 3 weeks or so (after the cramping and twitching had gone away mostly from Sept til Nov)
-twitching has gotten worse (original areas and new ones with increased frequency)
-muscle cramps have gotten worse (frequency and additonal locations) -- my entire left calf has a cramp when lying down often and almost everytime I walk anywhere.. the left calf also feels unstable when I walk
-all over global muscle wasting has gotten worse (to the point my body looks like a 90 year old man) with very little muscle tone anywhere (I know global atrophy isn't an early ALS sign usually but with respiratory onset, it actually is more often a clinical marker (as is widespread fasiculations)
-on and off Pain (I know this points away from ALS) --bilateral knees and shoulders (xrays negative for anything bad), charlie horse feeling on the sides of both thighs, low back pain, upper back pain by shoulder blades, bottom of neck (my guess is I have lost so much muscle mass that my joints are working overtime to support everything
- chest pain (could be reflux)
- voice is getting softer (different than my normal hoarseness from reflux
- slightly out of breath on exertion and increased heartrate that takes a while to go back to baseline (had heart testing


Have had 2 clean EMGs with a different Neuromuscular doc for each (late March and Aug 9th -- about 4 & 1/2 months apart) - -1st EMG from was 5 muscles across my right arm and leg -- 2nd EMG was 7 muscles across left leg and arm (no muscles outside of arms and legs have been EMGd so far) -- NCV right side had 1 area of carpal tunnel in March --normal NCV left side in Aug

Have had 5 entirely normal neuromuscular clinic visits from both those same docs (reflexes, strength, etc) - 15 min visit from doc 1 in Feb that I though he did a half-assed/rushed job, 1 hour (much more through visit) with doc 2 in March, 15 min quick exam from doc 2 in August the same day as EMG #2, 15 min quick exam from Doc 1 last week and 30 min exam from Doc 2 last week -- after both exams last week, both docs again were conclusively saying no MND and were saying no to additional EMGs unless something substantial changes in the future. Doc 2 did give me a referral to see someone from her (MGH's) dedicated ALS clinic for Jan 17th 2020. She gave me that internal referral for my own piece of mind, not because she suspects something. Also, while doc 2 is a neuromuscular doc who had done clinical research on ALS SOD1 for her PHD program (She is PDH/MD), she focuses more on the primary muscle disease side of things in her MGH clinic vs ALS where the new doc at MGH for Jan 17th focuses just on ALS within their dedicated ALS clinic

My doctors for most of the year had been focusing on looking for cancer given the muscle loss/weight loss and a few other issues (after several scans, EGDs/conoloscopies, lots of bloodwork), cancer had been ruled out.

That brings us to the Pulmonary function testing that I had done today (that I had requested from PCP)... same hospital as Neuro Doc 1.
With the increasing symptoms including a big chunk that started up (either new, or from before with a break), the ALS bug hit me again after I had totally written it off in August and tried to move on with my life to figure out what was going on (outside of Cancer, ALS etc). Of course I gave myself, the what if I had respiratory onset and that's why the EMGs of the limbs and normal clinic exams missed it.. or I had bulbar and that's why I missed it. What if the EMGs were done too soon, etc even though the chances of any of those scenarios happening would be small, especially for respiratory since I'm only 39 which happens in older people.. even more so than ALS happening in older people in general. I figured I could back into an ALS diagnosis indirectly with the PFT and I am glad I asked for it today as it shows issues (I had a PFT done 2 years ago when my docs were trying to figure out the cause for my post nasal drip and hoarse voice (which was diagnosed at laryingial pharynx reflux (LPR after getting scoped a couple times. My doctor records online just say the PFT 2 years ago in Jan 2018 was "normal" but doesn't list out exactly what areas were tested or what the numbers were (I asked for those today for more details). I never have had lung issues and definitely never gotten any lung diagnoses ever either

Results of the PFT testing from today is attached; I even had the tech do the FVC and FEV1 in both the seated position as well as Supine
I am not sure why some of the tests are written in 2 different places with different numbers (maybe because 1 shows supine/seated... and the other doesnt... not sure"
oddly enough, the supine numbers were a little better than seated for FVC and FEV1.

the abnormal results were MEP testing (very low) -- I repeated this one a few times to see if I could improve the number and this was the best it got, MIP ( borderline low), ERV (very low), RV (high), Raw (low), DLCO (borderline low), RV/TLC (high)

I don't expect anyone to be a pulmonary expert, but any ideas if these put me on the ALS track again? I figure if I was respiratory onset, the FVC would be worse,

I already emailed the results to both of my Neuromuscular docs that I have seen previously, but with the holidays, I doubt they will get back to me over the next week. I asked my primary about it, but she isn't an ALS or pulmonary expert, so I am sure she is going to get me set up with a pulmonary expert (I already called pulmonary and they said earliest they can see me is Feb)

so where do I go from here? I know everyone has told me Anxiety Anxiety Anxiety, but that wouldn't cause PFTs to be this off.

As an aside, I do have an appt with psychiatry for next week for an initial consult (I don't think Anxiety is causing all this, but I know it's only going to make all if it worse)

to help you figure these PFT results out, I am 39 yrs old, 5'11, 173 pounds and male
 

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Nikki J

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I am neither a pulmonologist or a neuromuscular specialist. FWIW this doesn’t look like the PFT picture I have seen in ALS. It is up to your doctors to assess it and explain it though.

who are you seeing in the ALS clinic?
 

Jshemnitz

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So I started reading up on what these numbers mean and I am really confused and will obviously talk to my doctors about

1. Spirometry numbers look fine which I know is the first place you'd look with ALS
2. MEP is low which could indicate neuromuscular disease from ALS or from the weakening intercostal and ab muscles. I have lost so much muscle including my chest and a s the past couple yrs from whatever illness I have that I can see in the mirror that that alone could be the cause of that maybe?..MIP looks close to normal which means my diaphragm is fine
2. I am reading online and see high RV and low ERV Lung volumes talk about obstructive lung diseases like COPD or chronic bronchitis... I had a normal chest ct done late in the summer when they were doing a cancer ruleout and looking for lung ca cancer, lung metastases or lymphoma because of the weight muscle loss. The CT scan was normal except they found these calcified lung granulomas which means I had some type of infection at some point in my life. I don't cough much..if at all so COPD sounds off somehow

Now I am so confused because this report is talking about 2 very distinct issues I could have simultaneously...especially with having a normal PFT done 2 years ago although I still need to get that report to see what tests they put me through.
 

Clearwater AL

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Jssheminitz. you have posted....

"Have had 2 clean EMGs with a different Neuromuscular doc for each (late March and Aug 9th -- about 4 & 1/2 months apart) - -1st EMG from was 5 muscles across my right arm and leg -- 2nd EMG was 7 muscles across left leg and arm (no muscles outside of arms and legs have been EMGd so far) -- NCV right side had 1 area of carpal tunnel in March --normal NCV left side in Aug.

*"Have had 2 clean EMGs with a different Neuromuscular doc for each"
(That's as good as good could can be for an often recommended second opinion many wait months for.)

"In August the same day as EMG #2, 15 min quick exam from Doc 1 last week and 30 min exam from Doc 2 last week -after both exams last week, both docs again were conclusively saying no MND and were saying no to additional EMGs unless something substantial changes in the future."

*Key words... "both docs again were conclusively saying no MND and were saying no to additional EMGs unless something substantial changes in the future."

Key word.... "conclusively."

I'm not sure who you trying to convince in lengthy extent here.. Us, the Neuros or... you.

Two Neurologists have concluded.... no MND. ALS is a Motor Neuron Disease (MND).

It is very best you keep that appointment with psychiatry.
 
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KarenNWendyn

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I’ll just add that the majority of the numbers including FVC look very good. My FVC started dropping before MIP and MEP and I’ve never felt short of breath, not even with a very low FVC and MIP.

I feel you’ve picked a diagnosis and are trying to make a case for why you believe you have that diagnosis. What you should be doing is going to your doctors with “here are my symptoms, what’s wrong with me?” and letting them take it from there. When you have tests done, it’s appropriate for you to ask for an interpretation from the doctor who ordered the test.
 

Bestfriends14

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May I ask why you are so bent on getting an ALS diagnosis when you show no signs? I second what Al says and do encourage you to keep the psychiatrist appointment for next week. I sincerely hope they assess why you've chosen to try and get diagnosed with this disease when, again, you show no signs. I do hope you can let this want to get diagnosed with this terrible disease go; I truly do.

Best of luck to you.
 

Jshemnitz

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Clearwater and best friends

I am definitely keeping the psych appt and am actually looking forward to it to get some help.

Karen

I am going to call my primary care doc on monday who ordered the test. I had already set up an appt with pulmonology before I even did the test but I can't get in for a couple months..I am going to ask neuromuscular about it too when I see them in Jan.

It's just weird that the results point to 2 separate issues going on...1 a muscular problem and 1 a obstructive problem...again with no pulmonary issues ever before..
 

Jshemnitz

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I forgot to say that every test I have had done over the past year or 2 has basically been pretty normal (they spent forever doing cancer testin) and all those were always normal. I went to my docs with what's wrong with me and my symptoms have kept changing over the past year. Muscle wasting over my whole body has been the constant. Everything else has come and gone...or came out of nowhere and added on top of the things I already had...so doctors tests for my current symptoms at the time which have been sort of all over the place.
 

KarenNWendyn

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I reread your first post in this thread. You said, “I asked my primary care doctor for a referral to get a Pulmonary Function Test”.

You should not be directing the workup. That’s up to your doctors. One of the risks of a patient directing his or her own workup is in getting tests which may or may not be relevant, and then trying to interpret the results yourself. I don’t believe you are a physician.

You’ve done enough speculating. I’m going to request that you refrain from further posting until after you have seen the pulmonologist AND after you have seen the neuromuscular specialist. It’s not our job to be here speculating along side of you.
 

KimT

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On FVC, anything from 80 - 120% is in the normal range. People with ALS will show a restrictive pattern in pulmonary function testing. Yours was normal. Regarding the MIP and MEP, these can be all over the place, especially if you had them after the other tests. The more you repeat testing, in one sitting, the worse your numbers get.....because you're tired.

I would get off the ALS worry bandwagon and let your doctors figure out why you lost weight. Anxiety can make acid reflux much worse. It has with me over the years during times of stress. Stress isn't good for any condition and certainly not good for general health.

Please let the doctors work with you. My guess is the neuromuscular specialist will clear you of ALS. Let us know but please don't post until after you've been examined.

Best wishes.
 

Jshemnitz

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Unfortunately, my doctors have stopped looking for weight/muscle loss causes...it's basically come back and check in with us every 2 to 3 mo for my primary docs and every 6 to 12 for specialists. ..that's across 3 different hospitals that I have seen docs at...which includes 2ns opinions (not just als)
 

KarenNWendyn

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I’m closing this thread as you’ve already been cleared by your two neuromuscular specialists. Since you are seeing a third neuromuscular specialist January 17, you may message me only if you have something new to report.
 
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