Is my Neuro in the elimination phase of diagnosis?

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Winelover49

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I will request if from neuro...thanks for your patience
 

lgelb

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Second all that, you have spine and heart issues that should be dealt with, so that's the direction to go, as well as possibly PT/a second opinion on the shoulder. I hope you have not been doing steroid injections since the 70s -- too many of those can weaken any joint over time. But if so, that is a likely contributor.
 

Winelover49

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Thank you so much for your response.

Do either of these pictures indicate atrophy?

Thank you
 

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affected

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Please don't post photos, they are unhelpful.
You have a doctor - have yourself examined for atrophy.
Please do post the EMG - until then we can't do another single thing. You have no ALS symptoms, but you do have health issues and should focus on working with your doctor. I'm sorry that's it for what we can do as you might realise our members are dealing with a terminal illness and may be using eyes or toes to operate their computer and breathing with assistance of machines.
All the best.
 

Winelover49

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Please forgive me and accept my sincerest apology.
I am truly sorry if I have offended anyone.
 

Winelover49

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Update...

Had a teledoc visit with neuro about a week ago.

She has reviewed all of my tests and has decided to put me on Prednisone, 6 (10's) a day, five a day and then 4 a day until I see her on May 6.

She did an exam of sorts by looking at my eyes, mouth and tongue. Had my wife a retired OR RN assist with test of neck muscles, arm strength and she had me place my hands on shoulders and get up from chair without assistance which I was able to do. Wife told her mild weakness in one shoulder.

I told her I had noticed some shortness of breath and a bit of a diminished cough so she had me cough two or three times.

Since then I have noticed that I am tired/fatigued often during the day and seem to be getting a bit weaker with quivering upper arms and thighs.

I have lost 20 pounds since January 27 but as my wife told the doctor there have been many days where I didn't eat more than 700 to 800 calories. I am trying to eat 2,000 a day now and it is a struggle as I just do not have an appetite.

Doctor said we would try the Prednisone to see if that would help. She indicated that I have a neuropathy but she just isn't sure what is causing it yet.

No I do not have the EMG...but is this how ALS presents and progresses?

Thanks for the patience and consideration

Regards

Tom
 

KarenNWendyn

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No I do not have the EMG...but is this how ALS presents and progresses?
Not really. With ALS, the affected person out of the blue realizes they can no longer do something they could do before such as rise up on the toes or heels, fasten a button, or brush their hair. They see a doctor who detects clinical weakness. This then leads to a full evaluation including an EMG, which shows characteristic changes in the case of ALS, and ruling out ALS mimics. It almost never starts with twitching.

Get those EMG results if you can and keep working with your doctor. Until then, there’s not much more we can tell you.
 

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All is sounding good for you so far as ALS - and prednisone is never used as a treatment, so your doctor is certainly thinking this is something else. So glad for you. The EMG will be useful, but really you don't have any symptoms of ALS at all. I'm truly so glad for you.
 

Winelover49

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UPDATE

1. Took three weeks of Prednisone with no noticeable effect.

2. Referred to pulminologist due to weak cough and shortness of breath. Cannot be tested until June 1 due to Covid restrictions here in Houston. Given Anoro inhaler and albuterol inhaler but no real difference. Cannot walk from front office in house to master bedroom without being short of breath and need to sit and catch breath.

3. My cough is virtually nonexistent and I cannot clear throat.

4. On May 26, 27 and 28 I am being evaluated by Dr Stanley Appell, one of the best at the Houston ALS Clinic.
 

Nikki J

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You are very lucky to be seeing Dr Appel. He is indeed among the best - not just at Houston. If you are not already doing so please isolate yourself from anyone who has outside contacts - even family members. Dr Appel is elderly and thus at risk. He is too valuable to lose. I am surprised he is seeing patients.
good luck and let us know how it goes
 

Winelover49

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I will but it appears that this is looking more like ALS than before,
 

KarenNWendyn

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No one has said ALS but you. If you want ALS that badly, please take mine and I’ll take whatever you have. Do we have a deal?
 

Winelover49

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No thank you but I have read enough to be concerned about the new symptoms.

I am indeed sorry if I have offended you particularly since I have developed a deep admiration for you personally after reading so many of your posts..
 

Bestfriends14

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No, you don't have ALS, or any ALS symptoms, regardless of what you have chosen to cherry pick from readings. No need to focus needlessly on this totally unfounded worry.

Also, please remember your audience: they are people dying of this cruel disease, or their caregivers running on little to no sleep. You are neither, so please be respectful and believe the folks here who have generously provided you with answers. Continue to ask questions and pile on non-ALS symptoms seems a little unfair, don't you think?
 

Nikki J

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I really feel as if we can not comment properly since you chose not to obtain the emg report. It was your right to get it and you had plenty of time. I think that is frustrating to people who wanted to help. That would have told us a lot about whatever is happening to you


i am going to close this thread. however I hope you will report back after seeing Dr Appel however it goes
 
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