Awaiting EMG but new scary symptoms

[Shmack08]

Hi there. Thank you for your time with answering questions.

I have seen PCP,2 neurologists, both said clear exam except neuropathy in feet? Awaiting EMG

Have had body wide,mild fasiculations for 6 weeks including tongue. Mild cramping in rib cage, feet, calves, shoulders.

This week has been the kicker. I have had liquids seemingly going up my nose while drinking at times unless I concentrate on what I’m doing, random PVCs now at times which saw cardiologist and wearing holster monitor.

Now today!! I had what felt like my entire stomach top to bottom and my back feel like it was painfully cramped up super tight. It was so painful I contemplated going to ER but I checked my BP and was fine and it went away in like 5 min and now I seem ok but scary!!

Has any PALS had this before? I am super scared I have respiratory onset since I’m having PVCs and I get winded doing normal things now

 

[lgelb]

PVCs are not a sign of ALS. Your cardiologist will share the Holter report with you and then you will know more about your heart rhythm.

The EMG will provide more information as well.

Two clear neuro exams are very good news. I don't think you have ALS, but let us know when you have EMG results.

 

[Shmack08]

Thank you for your reply. I know PVCs are not a symptom of ALS sorry I think I could have written that better.

I was worrying that due to my respiratory symptom that maybe I’m having PVCs now from hypoxemia or something. I do feel like I need to take deep breaths all the time and my rib cage feels tight. I have a pulse ox meter and I’m typically 96% when resting but walking around can go down to 94%

I will wait for EMG. If it’s respiratory onset though I believe it will not show up correct?

 

[Shmack08]

So had EmG of uppers /lowers came back clean. And referral to neuromuscular specialist cuz This neuro doc does not do tongue or neck/ back

How is respiratory onset picked up?

my only symptom along with the twitching is cramping in my abdomen and rib cage and back weakness and shortness of breath like I can’t take a deep breath in every time.

With ALS can bulbar start with the feeling like food and drink are not staying in stomach but coming back up a little and sitting before going down or am I now having anxiety symptoms…. Ugh

Thank you for your time and your patience with us going through the diagnostic process

 

[lgelb]

Respiratory onset or any other ALS onset type would show multiple abnormalities, not a clean EMG. But with shortness of breath, pulmonary function testing could also reassure you as to ALS while illuminating any other lung problem. So that is what I would ask about next. For example, you could have adult onset asthma -- not uncommon. And in allergy season, it could be worse.

 

[Shmack08]

Thank you I do have a pulmonologist appointment in a few weeks and what would they need to check for diaphragm movement or respiratory from neurological cause vs asthma or something like that?

 

[Shmack08]

Hello again.

Recently my SOB seemed to get worse. As well as mild cramping in muscles mostly my right leg and right bicep. Have a feeling like food is getting stuck in my throat when swallowing but liquids are fine it seems.


I went to the ER yesterday they did CT of neck and chest which was normal, lab work was normal but not sure what they tested for exactly. They tried albuterol treatment which didn’t help. I feel like I can’t take a deep breath in.

Does this sound like respiratory onset ALS? How would they test for this? ER doc said based off of imaging I don’t need a pulmonologist. But would PFT be more accurate?

 

[ShiftKicker]

Sorry you are still struggling and looking for answers.

ERs are not a great place to get long term treatment recommendations, nor a good replacement for specialist care- they really are a place to get attention for immediate medical care in emergencies. An ER doctor has a different perspective than some other specialists and their priority is to stabilize symptoms, not work on long term issues outside of making sure they are not an immediate threat to life. You should definitely keep your upcoming pulmonology assessment, as well work with your gp, who knows your medical history and has been tracking any changes in your health and current symptoms.

There's not much the folk here can help you with as you move through a diagnostic process. You are looking for answers that we can not provide. TBH, you still don't sound like you have ALS, so the only advice is to keep working with your doctors and ask them any specific questions about your care. They've seen you, they know your history and they are ultimately who will provide you the direction in which to look for answers.

 

[KimT]

If breathing issues are your main concern, please see a pulmonologist. They can diagnose and treat many breathing problems.

I'm sorry you're going through all this.

 

[Shmack08]

Hi again. My swallowing has gotten worse. When I swallow it feels like food is getting stuck in the back of my throat and I get a globus feeling I don’t choke on it yet but I have to eat small bites and drink water to get it down.
Speech is normal and still having shortness of breath that comes and goes.

I am getting swallow test tomorrow. Has anyone here heard of bulbar starting with food and thick liquids getting stuck? I thought from your read before Posts that it’s typically tongue issues affecting speech?

Thank you
oh also getting pft tomorrow

 

[Nikki J]

Pfts and a swallow study will give you a ton of information please let us know when you have the full results

 

[Shmack08]

Thank you Nikki.

Have you heard of bALS starting with esophagus or pharynx issues because my neurologist stated she was putting it down as benign dysphagia.

I’m not sure what that means. She said I have benign fasiculations and benign cramping and now that. Snd didn’t order a swallow I went to an ENT who did.

ENT stated my vocal cords look good and are functioning well but couldn’t tell me about the esophagus which weirdly feels swollen at times and then Overly lax at others
Just curious if you have heard of this kind of onset cuz my neurologist said I would have tongue fasiculations

Thank you for your kindness and God bless

 

[Shmack08]

Hi there. I just want to give an update with my results:

Barium Swallow test done and have not heard from doc test but speech pathologist said my chewing and swallow were brisk and everything cleared my airway just fine.

It’s so strange though cuz I feel like food is taking longer to get down and I have to drink more water to get certain textures down. Speech said it could be further down but feel it there or spasms.

PFT:
My PFT doc said was lung function 115% better than normal resting results is what he said
I attached the results as I do not understand what I’m looking at.

The only thing that concerned him was that my ANA was high 1:80 and that I should see a rheumatologist but I’ve already ruled out sjrogens, lupus, thyroid, scleroderma, ms, among others.

Can ANA be high in neurological disorders that you have heard of? And my albumin was high at 5.2? Could that indicate anything you all have heard of? I know you aren’t doctors just curious.

I’m having a stress pulmonary test done in 2 weeks cuz I’m still having SOB but am going to see a rheumatologist now. I think I’ve seen every specialty now.

I just want to thank all of you who have taken the time to answer my questions and give me advice. The work you do here really is amazing and greatly appreciated.

I will return when I have further work up or definitive diagnosis

 

[KimT]

That’s a low ANA. I have Hashimoto’s and my ANA has been higher than that even though my thyroid function is normal.
ALS is not an autoimmune disease, so you can put that to rest. Your pulmonary function test was excellent.

Follow all your doctor’s advice. We can’t answer medical questions but you don’t need to chase ALS.

 

[Shmack08]

Thank you so much Kim for responding.

If it wasn’t for the twitching and cramping I don’t think I ever would have thought about ALS