Back muscle atrophy and scared

jonico

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Al is right Jselliott, you seem to be expecting to find therapists and doctors here. The moderators and numerous others are very knowledgeable and very kind and gracious with their time, but it is too much to expect them to be both your therapist and your virtual neurologist. Find someone to really talk to about this and let your doctors handle the medical advice.

You must find a way to stop worrying and start living. You've been here for a year, and there is every indication that you've let this take over your life.

My wife first noticed something was wrong in July of 2014 and visited her PCP about a month later since her arm wasn't improving. She saw a local neurologist a couple times in October. She was referred to Columbia in NYC for an initial consult in November and returned for further tests before getting the official diagnosis 12/30/14. I tell you this because even though she grew increasingly concerned those six months, she simultaneously became increasingly determined to live like before or even more fully, if at all possible and for as long as possible. I was sorting digital photos earlier tonight and I was blown away at how much living we packed into the two years between when she first noticed something amiss and when ALS really started to more substantially impact her mobility in the later months of 2016. There were a lot of smiles in those photos.

I know everyone is different and I can tell you have some serious anxiety and it isn't easy for you. But I have to believe, based on everything you've shared so far, your anxiety is far more likely to take you down than ALS.

Seriously...redirect the the energy you expend spinning your wheels here "gaining knowledge" toward enjoying life...talk to a professional about your anxiety...and let Doctors be your Doctors. I sincerely hope you can find some peace.

Jon
 

Jselliott07

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I’m just coming on here to update. I had an emg today and the neurologist said it was “abnormal”. She said she found left ulnar neuropathy and L5 radiculopathy that weren’t on my previous emg. I don’t have the full report yet and she said I’ll have to request it from medical records department as it can’t be scanned onto my patient portal. My concern is the difference between the first emg and this one and what that means. I was kind of hoping for the “you’re clean we never need to see you again”, so I’m bummed I didn’t get that. I guess I don’t know where to go from here and will hopefully gain more insight when I have a follow up call with her.
 

lgelb

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Neither of those conditions has anything to do with ALS. Both are very common and treatable.
 

Bestfriends14

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J, you don't have ALS. This is evident from your EMG, lack of ALS symptoms, and clean clinical exams. So, where do you go from here? Back to your doctor and away from this forum. You are now on page three of writing about your symptoms that have nothing to do with ALS; it's truly best that you move on- for your own wellbeing.

Best of luck to you. Stay safe.
 

Jselliott07

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Ok great, thank you! I’ve never heard of either of those terms so I wasn’t sure what they meant.

I don’t know how to tag anyone but I really wanted to thank those of you that have been so kind to me and talked with me and helped me. You are angels, truly, and you don’t know what your kindness and words have meant to me. Thank you seems so small to say but really, thank you! From the bottom of my heart. I’ve valued and appreciated your kind words and and the time you’ve taken and I don’t take them for granted.
 

Jselliott07

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Hi guys! I hope everyone had a great Thanksgiving/Christmas/New Years. My neuro had said something to me that I wanted to get clarity on, if possible. I’ve asked her but she’s on holiday and hasn’t been able to respond. She has noticed my tongue and speech/diaphragm issues and swallowing/excess saliva and said we would check at the next clinical appointment to see if anything is going on. I still have the issues I’ve had before ie tons of muscle twitching, stiff muscles, breathing issues, trembling muscles etc. I assumed since I’ve had the emg that that was sufficient enough but she said not always in bulbar issues and that I needed to be evaluated in clinic, so does anyone else know of additional things that need to be looked into for bulbar vs limb? Her saying I needed an additional clinic exam kind of threw me for a loop so I didn’t know if anyone else had any knowledge on this process. Thank you all. God bless!
 

lgelb

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I am sure she wants to be diligent and follow up the issues you feel you have. That does not mean they are clinically relevant. You are obviously anxious and she is responding to that. If she really thought you had bulbar dysfunction now, today, you'd know about it. And given the period you've described, and your most recent EMG, it would be impossible to fit that into any MND of which we are aware, meaning that it would be treatable, even if it existed.

In the years that you've been worrying about ALS, many PALS here have been diagnosed and died. I urge you to make your new year about health. That means getting help on the ground for your anxiety about a disease you don't have.

Best,
Laurie
 
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