Jshemnitz
Member
- Joined
- Feb 19, 2019
- Messages
- 22
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- MA
- City
- Boston
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
I posted before and promised I wouldn't post anything until I had important testing updates.
previous post from August:
Getting a 2nd EMG next week - my neuromuscular doc is worried
Hi, I posted before in early March but the thread has since closed (Nervous I have ALS / Just saw a Neurologist) I had a clinical exam with a neuro muscular neurologist at Tufts in Boston that concluded with no features that would indicate anything to be worried with ALS or other...
www.alsforums.com
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