Neurological symptoms started 25 years ago.....

stuffyearsago

Member
Joined
Jul 4, 2019
Messages
12
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
CA
Pulmonologist ordered sniff test and swallowing study today. Also picked up BiPAP machine as CPAP made it hard to exhale.

Will have an EMG of arm and abdomen....will report back afterwards.
 

stuffyearsago

Member
Joined
Jul 4, 2019
Messages
12
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
CA
Sleeping with BiPAP seems to fill me with air....yet if I turn down the air volume (I am tall, so it's 400), then it seems inadequate. It's not a trilogy but rather a respironics. Trilogy 100 is what UCSF ALS Center recommended.

Next step according to neurologist is to repeat some tests and additional EMGs.
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,576
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
Respironics makes the Trilogy, too. Your model is probably designed for home use only, which does not require the expensive portable battery like the Trilogy has.

Depending on which model you have, adjusting settings such as rise time or trigger/cycle sensitivity may help you make the most of whatever your optimal volume turns out to be.
 

stuffyearsago

Member
Joined
Jul 4, 2019
Messages
12
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
CA
Really had a miserable night.....ultimately, I think I have respiratory onset with autonomic involvement, as described here - Sympathetic Hyperactivity and Sympathovagal Imbalance in Amyotrophic Lateral Sclerosis - touchNEUROLOGY

Last night, went to sleep with the BiPAP with an oximeter on my finger showing maybe 98%. Slept about 2 hours and then woke up feeling smothered....looked at my O2 - was 95%, not even that bad. HR down to 50. Tried to take deep breaths and get through it - but ultimately, O2 slipped down to 95% and made me start having nightmares and woke me up. Had to take off the mask. O2 cranked up to 100% as I gasped to breathe. HR up to 62. Struggled, felt chest pressure, discomfort. Tried stretching back and stomach. Put mask back on, tried again, same problem. Ultimately put mask on and slept on stomach. This worked, and I had maybe one more hour of sleep.

I think I am having autonomic dysfunction impacting breathing, BP, and HR. I am taking valium and metoprolol to control the BP. It has dropped my HR down to the 50's. Before getting sick, my resting HR was low 60's, then upon getting sick in May, shot up to 75 resting HR.

I think the autonomic dysfunction is apparently very rare. I sent the link about to the Dr. Lomen Hoerth at UCSF, and she said she didn't even have any patients with autonomic dysfunction.

Bottom line is my oximeter can show 100%, yet I am gasping for air. Has anyone else experienced this? I will have autonomic testing at Stanford hopefully soon - these appointments take forever to get scheduled....

Thanks, Laurie, I have messed with some of the settings....the only thing that bugs me a bit is the slight delay on breathing in sometimes but mostly it is ok. I am going to ask to order the Trilogy 100 with smart card - this was recommended by UCSF. I need something portable. I feel panicky in the car sometimes because I'm short of breath and have nothing portable. Yet, my O2 is often above 95 on the oximeter when this happens - this is why I think I have an automonic problem rather than strictly breathing decline....although my MIP/MEP are 42/44 on last test.

Thanks for listening....
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
2,422
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
That’s one of the more creative self-diagnoses I’ve seen someone come up with on this forum!

Anxiety can stimulate catecholamines, causing your vital signs to go haywire.

You have further evaluation pending including an EMG, I believe. I would strongly suggest you leave it to those experts to properly diagnose you and refrain from further posting until then.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
11,811
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
home
Really, please no more until you have an EMG to upload.
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,576
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
The oximeter would not have much to do with your perception of your breathing, even in ALS. And sats of 95% should not relate to nightmares. Even a 75 resting HR is perfectly fine, but regardless, HR drops in sleep and rises when you wake up for any reason, which actually suggests normal autonomic variability.

However, many people are not going to feel that great keeping HR in the 50s, nor a BP that is too low for the activities they perform, so I wonder if you're overmedicating and your feelings of not having enough air relate to respiratory depression secondary to that, or still suboptimal machine settings. Valium can disrupt sleep as well (it's a downer, an anti-anxiety drug, not a BP drug).

If you are having panic attacks in the car, that suggests revisiting Valium and other therapeutic options such as CBT with a mental health professional. It also suggests that for the sake of yourself and others, you should not be driving until your condition is more stable.

Also, many people feel stifled by PAP masks; a fan all night can help.

Wearing an oximeter seems to only be fanning the flames of anxiety, as Karen points out, so I would leave that off. If you and your PCP agree that you need daily metoprolol for BP control, try taking it before bed every night, if you are not -- it should work better for you that way.

I agree, there's no point to your posting further until you've been evaluated for the conditions we cover here.
 

stuffyearsago

Member
Joined
Jul 4, 2019
Messages
12
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
CA
Per my sweaty feet, one neuro gave me the 24 hr urine collection test for catecholamines a few weeks ago - was negative.

Am taking valium (2mg) 3x per day and metoprolol (25mg) 2x per day. I have have stopped the Trazodone (50mg) at night for now because another Kaiser neurologist had a theory on Porphyria and is testing me for that and wanted the Trazodone stopped - looking like it will be negative, though.

As to why valium, it's because I started having these autonomic storms of BP and HR going sky high and chest pain/pressure. It was horribly scary, and they'd come out of nowhere, with BP 170's/110's, and it felt like my chest would explode. I ended up at the ER - could not get any help at all there - told panic attack. Was not a panic attack. Could not get out of these storms. Found this - Amyotrophic Lateral Sclerosis with an Acute Hypertensive Crises and a couple other PubMed docs referencing valium as treatment for autonomic storms. Also read about others treating autonomic storm high BP with metopropol in this forum. Desperate to get relief, asked doc for valium and metoprolol. So, yeah, was my idea to take them out of pure desperation because I just cannot medical guidance for this. These autonomic storms are apparently rare, and I have no diagnosis, except MIP/MEP being low, so I am flapping in the wind, increasingly weak, needing a wheelchair for longer distances, and basically don't have energy to leave the house except to see a doctor. Episodes of being horribly short of breath out of nowhere, even with O2 not being low on oximeter...so am afraid to leave the house - no portable BiPAP.

Every day/night is a struggle to sleep and breathe, and I'm getting worse. And yeah, heart and lung tests normal thus far (except MIP/MEP). Wore a 24 hr monitor for heart and had echo test and EKG(s).

Abdomen has twitched and shrunk, intercostals have shrunk and deformed my back.

I will have an overnight sleep study next week, tomorrow a swallowing test, and hopefully soon, EMGs. ok, I will post again afterwards and hope I make it because every day/night is a challenge of breathing problems and chest pain/pressure. Things that are a week away now seem like a year. I can't believe how much I'm suffering and with no recourse - in the ER, there are breathing problems involving heart and lungs - muscle breathing problems or autonomic breathing problems are not even acknowledged there.

I never have taken these types of drugs in my life, and I suspect they are having some negative impact, but with them, the BP goes 140/95 instead of 175/115 during the storms.
 

Bestfriends14

Forum Supporter
Senior member
Joined
May 7, 2017
Messages
658
Reason
CALS
Diagnosis
05/2017
Country
CA
State
Alberta (AB)
Alright, I think your posting is maxed out until you get your EMG results. You are coming to an ALS site for dying people and their loved ones and going on and on and on and on about symptoms that are not ALS indicative.

You've been asked not to post until your EMG reults are in yet, disrespectfully, you continue to post long messages. Please post back AFTER you get your EMG results, even if it's in 6 months, and please do not feel the need to post every symptom you experience. It's unfair to keep requesting time from the forum members when there's not much they can do for you.

Best of luck.
 

stuffyearsago

Member
Joined
Jul 4, 2019
Messages
12
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
CA
I had an impromptu EMG. It seemed kind of informal. I did not undress from street clothes. There was no formality about ensuring the room was the correct temperature - in fact, it was pretty cold in there. I felt like the quick and dirty EMG was intended to try to alleviate my fears of ALS. In addition to the EMG, he wanted to increase my valium from 2mg to 5mg and also give me tramadol.

In any case, here are the results....to start, he did a a couple small nerve conduction tests on my left arm:

1567643379045.png


1567643480604.png

One thing that's strange about the above EMG is that he also stuck the needle in my arm, and that one isn't listed.

Second thing is that I know when he put the needle in my lower right side, there was a definite fibrillation sound. I even said, "that one is fibrillating", and he replied, "yeah, you're a little tight there." But that result isn't really shown above. That sounds was definitely different than the others, and that is the area that I've had the swelling/deformity - lower right of my back.

I'm just not confident in this EMG because I feel like this neurologist who's actually very kind, is just trying to wipe the ALS thoughts from my mind because he thinks it's a large contributor to my symptoms in the form of anxiety.

Another EMG is still to come at UCSF where they will more certainly call it like it is with more formality.

But in the above, for example, why are there no numbers for the EMG data? I noticed others have numbers. How does one use this as a baseline if there's nothing listed but "normal" and "none"?

Final question - what does "increased" mean on insertional?

Thank you all again.
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,576
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
If the outcome is "normal," there are no numbers in that EMG box.

Abnormal results can be 1+, 2+, up to 4, but aren't always. This was a quickie as you say. I would be happy that he sees no abnormalities to worry about or follow up. Whatever his motives, if he'd seen something of concern, that would be reflected in the written record from a legal perspective, even knowing you are going to UCSF.

Increased insertional activity by itself, in one muscle tested, means nothing.

The rest of your questions should be directed to the examiner, but I don't see anything sinister or different from the body of evidence against ALS here. Please again refrain from posting until after you have been to UCSF.
 
Last edited:

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
2,400
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
Is there a reason why you are not addressing these questions with your doctors? Any answer here would only be people guessing what the thoughts of the person conducting the EMG were. Your negative assessment of the techniques of a specialist would have to be discussed with your doctor- this is not something the laypeople here can be expected to comment on. It's not really clear what your purpose is here with complaining about your emg and your second guessing the person conducting it. And your statement that your neurologist is just trying to wipe the ALS thoughts from your mind- Isn't that the point of their conducting an EMG? Eliminating that from the list of possibilities via EMG IS the point.

This forum really is specifically here as support for those with ALS and their caregivers. While your symptoms are life limiting for you and must be very frustrating, the people here can't be used as a complaints department or an audience to whom you must dictate your non-ALS diagnostic process. I encourage you to seek information from your medical caregivers and possibly also try to find someone who can help you deal with the stress this all must be causing you. It's been a long process for you and it's clear your frustration and anxiety about ALS specifically is taking over- you seem unable to believe it when medical experts tell you it's not ALS.
 
Top