Awaiting EMG but new scary symptoms

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A slightly high albumin can signify that you are not drinking enough. Maybe try different liquids, or thicker ones, like smoothies and soups, or foods that have a lot of water like watermelon.
 
Thank you Igelb

I have another question that maybe you all might know better than my neuro he said he didn’t know.

I’m still having the shortness of breath and when I lay flat and don’t concentrate on breathing fully I desaturate down to like 90%.

Could someone have a normal PFT but still have weakness if breathing muscles? Would this cause shortness of breath that you have been told or heard of?

Thank you all
 
Shamack, you've posted 10 messages, it's gone onto a 2nd page.

You've an upper and lower EMG and it came clean. No ALS.

Then you've asked if a normal PFT but still have weakness if breathing muscles?

Previously you were told by more than one questions like this can best be
answered by your doctors.

Again, like many before you - you apparently are dealing with considerable
Health Anxiety nearly fixated worry of ALS. Ask your doctors for help with that.

What might help us if you would post the de-identified EMG report with
the Summary/Conclusion at the bottom of the report. Optional.

I hope one of your doctors can convince you to move on from the burden
of ALS worry.
 
You are right clear water. I think I am going down the rabbit hole. My doctors can’t seem to answer my questions though which is frustrating.

Honestly if it wasn’t for the cramping and twitching this started with I would be leaning towards either GI issue ( seeing GI doc tomorrow ) cuz if swallowing issues or respiratory but both together with twitching seems off to me but I hope and pray I’m wrong.

I’m sorry to be one of the hysterical ones on here while you all are going through so much. Forgive me please. And All if you have been in my prayers. I will not post agsin until I have a diagnosis period to let others suffering with anxiety know outcome.
 
Hi everyone. Had neuro follow up today and I have a question.

Only thing she found on my exam was finished patellar reflex bilateral but Achilles was normal.

This was the same on 4/6 when I was evaluated by another neuro but different then my initial exam 3/15?

Is this a sign of an MND both neurons said could be many things? I have not had another EMG since this change happened. The EMG was done the week of 2 prior?

Should I ask for another EMG? Or would you?

Thank you
 
i have no idea what a finished reflex is but bilateral anything is not worrisome. Reflexes can be more or less reactive on different days anyway depending on stress, caffeine, examiner etc
 
Thank you Nikki. Sorry I was auto corrected I think. It was meant to say diminished reflexes only patellar bilateral apparently neuro said maybe spine issue? But she didn’t want to test further since rest of exam normal
 
One diminished reflex, esp. bilateral, is not any kind of red flag.

Also, to your earlier question, if someone has breathing problems because of ALS, they will not have normal PFTs.
 
Thank you Igelb and Nikki. I appreciate you taking time to answer me
 
I’m sorry I have another question after my MRI today.

I know my pfts were normal but I am recently having twitching pretty bad in my rib cage area again and today in my MRI I had a hard time remaining flat for 1. Hr without feeling air hunger.

Even though PFT normal should they have tested mip mep? Ir sniff test? I also cannot lay flat at night in bed.

Could lung function decline in just 3 weeks?

Thank you
 
It would not make sense that your VC would be normal in ALS, so not having done the other tests you measure, which are more toward monitoring progression, doesn't really leave ALS on the table.

Was GERD ruled out by the GI specialist?
 
Shmack08...

I suggested previously and I'll give it a second try... if you could post your
last de-identified EMG report with the Summary/Conclusion at the bottom,
the whole picture of this could be more clarified.
 
Thank you lgelb. The GI specialist didn’t think GERD was causing my SOB or my swallowing issues.

He wants to do EGD for structural possibilities lower down esophagus since my modified barium swallow came back normal he said I could be feeing issues swallowing up in my throat but coming from lower down?I couldn’t get in until 6/8 for EGD.
He mentioned could be issues with esophagus motility too but have to do EGD first.
The fact that lying down has gotten more uncomfortable breathing wise worries me. That is new. Also pulmonologist had me do sleep study( home one) I’m waiting on those results now.

Also lately my middle back between my shoulder blades feels..,, only way I can describe is straining feeling like the muscles are working hard in that area to keep my posture and I get burning tingling across that area of my back.

And now my legs feel weaker ( neuro did not find clinical weakness) more R leg then left but it feels like it’s my whole leg starting at the top down. Weird feeling. Almost like my leg is unstable. This started like 2-3 weeks ago but seems worse now.

I’m starting to get pretty worried actually. I know my odds of having ALS in general are unlikely and respiratory onset in a female who is 43 yo is even more unlikely for that kind of onset but I feel like I have all those same symptoms. Sometimes though I think maybe I don’t want to know either just want someone to tell me this is all in my head.

I’ve also lost 36 lbs in 4 months but maybe stress I hope.

I feel like I have done so much testing are there any others you could think of that I am missing? They have ruled out like every pulmonary disease, auto immune, heart issues.

Thank you Clear water, I need to get the EMG from my neuro. He didn’t give me a copy when it was done. He just said it looked completely normal and that he didn’t even catch a fasiculation. Only thing was sensory in the NCS that showed carpal tunnel in my R hand I’ll post it when I get it from him.

Should I ask to be referred to a neuromuscular specialist to test stomach ir back? Redo the EMG with this neuro? Let this go and wait and see what happen s?
 
The EGD is less than a month away, and should help narrow the possibilities. But there are hundreds, so it would be difficult for us to generate a manageable ruleout list from afar. I can only say that I would leverage or find a good internist to help you work through one.

There is no way you have respiratory onset ALS with normal PFTs and a clean EMG.
 
Thank you for your reply lgelb. I appreciate you all.

I like many I worry the EMG was done too soon though I have read in this forum from you that that is not possible if twitching was present at that time and twitching was due to als.

So I will take that snd run with it for now along with you stating no respiratory onset if PFT normal

Thank you
 
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