Single mom & scared.

[nicolea]

Thanks again, Mike. I see my neurologist Thursday again. He is most likely going to order an EMG as the next line of testing. I've also read conflicting information on EMG testing for arm/shoulders. Some say that since it's 'upper motor damage' it wouldn't show on an EMG anyway. Well then why would he order it in the first place? I guess the internet is probably my biggest issue. I'm just worried it's respiratory onset and the diaphragm weakness is causing shoulder issues. Is that even a possibility? I don't know what I'm thinking actually...as you can see.

 

[Atsugi]

Between now and Thursday, nothing will really change. So just think good thoughts until then. Let us know how it goes.

 

[lgelb]

Hi Nicole, you're confusing "upper motor neuron" damage (less easy to see on EMG) with upper extremity (arms, shoulders, hands) symptoms such as you have. They aren't the same at all.

In ALS, both upper and lower motor neurons are damaged, but usually the lower motor neuron damage shows up early and is seen on EMG, and that's a big part of how the diagnosis is made. When lower motor neurons are damaged, there is weakness and atrophy. When upper lower motor neurons are damaged, there is spasticity and stiffness. When only upper motor neurons are damaged, it is not called ALS but PLS.

If your neuro is recommending that you have an EMG, why not get it and have more information about what you may or may not have?

Best,
Laurie

 

[nicolea]

So I saw my neurologist yesterday and he was actually kind of harsh and rude. He came in and said "Well nerve conduction was completely normal so I don't know what to tell you." I explained my shortness of breath, burning left shoulder blade, and terrible cramping pains in my left arm. He said he has no idea what it could be. He then must have realized he was being rude because he said he would refer me to a neuromuscular specialist to see if they have any ideas. He then had me walk on my heels, toe, checked reflexes, and my tongue. I passed everything fine. He got irritated when I brought up my ALS fear again. He said "Well maybe a neuromuscular specialist will ease your mind and you'll believe him." He had no idea what could be causing my shortness of breath.
So although I'm glad my reflexes were normal and he still is adamant that it's not ALS, I'm still scared and anxious over what the heck could be going on with my body. My left arm tires very easily. I can hold my 1-year-old with it but it aches and tires very quickly. I don't know but being anxious for this long is very exhausting and this shortness of breath is enough to drive me crazy! It's scary because some of the old posts from way back in the day on here say they started with sore muscles and muscle pain before real weakness set in. This is so unsettling for me. I know that a neuromuscular specialist will be months to get into. I have a wedding, honeymoon, and a bachelors degree to continue with over the next 3 months, I can't deal with this anxiety anymore!

 

[Atsugi]

Nicolea, what is your problem, ALS or anxiety?

Do you have a counselor or therapist?

 

[nicolea]

I do not have a therapist/counselor. I'm to the point now though that I am going to look into one. I just can't shake this constant arm cramping and finger stiffness. My PCP is not referring me to a neuromuscular specialist. She doesn't think it's necessary at this time but I have an appointment to f/u with her in two weeks.
I hope it's anxiety but I just have a really hard time accepting the fact that it could cause this amount of arm cramping and weakness.

 

[Atsugi]

Nicolea, it's amazing what the mind can make the body do.

When I retired from military service after 20 years, I followed my wife to her next job, settled in to the new house, and then--having no job and no responsibilities and no uniform to wear--my body locked in tremendous pain, folded up like a hunchback. I saw doc who gave me a Valium and sent me to a shrink who diagnosed Adjustment Disorder.

Just the fact of having no responsibilities had bent me over in pain.

 

[nicolea]

Wow, that's comforting (sorry that sounds terrible) to know that it can actually manifest that way. I'm sorry of course that you had to go through that. She's given me Sertraline to try. I've spoken with my chiropractor a couple of times over the last few months and I think I'm going to really try to calm down and not think the worst. If I have ALS it will prove itself sooner than later. If I have anxiety, I imagine at some point I will have to figure that out. Thanks for everything.

 

[gooseberry]

If you are seriously worried about breathing issues, see a pulmo and get a sniff test. It will show what is happening with your diaphragm. A chest ct, depending on sniff tests results, can show what is happening with the phrenic nerve. If both are normal, it isnt respiratory als.

 

[nicolea]

Hello. So I was finally referred to a neuromuscular specialist. I'm still unfortunately still having some issues. My left arm primarily the main thing. I'm still experiencing twitching body wide usually in my left arm more and usually after using it or bending it. I also notice when I move around a lot I start getting flutters and twitches in my rib cage and sides. But they are really everywhere. I do notice after I've worked out or held my baby in my left arm it is really tight and sore for awhile. My shoulder is still giving me the burning sensation sometimes too (especially after use.) All in all I'm just still noticing fatigue and cramping/ache pain mainly in my left arm but everywhere. I'm still taking my Zoloft and I've seen a counselor. What do you think?

 

[affected]

What did the neuromuscular specialist say?

 

[nicolea]

I haven't seen him yet, the appointment is 3 months out.

 

[affected]

OK, well the good news is you are still reporting issues that don't indicate ALS at all.
Report back to us here once you see the specialist for sure.

 

[nicolea]

Thank you again for your response. I am having an INSANE amount of muscle twitching. The type of twitching has kind of shifted as well. I have more of a fluttering/wormy type twitching in my thighs that aren't exactly constant but they happen quite a bit. They come on standing, sitting, laying down, you name it. I can sometimes get them to stop by flexing or moving the muscle around. I also start to twitch in my arms/shoulders if I move them around, move quickly, or carry something relatively heavy (child)...I am also experiencing weird cramping sensations in my hands, arms, feet, calves. I definitely experience it most in my left arm still which also still gives me a burning sensation in shoulder blade. But my left arm really does fatigue quickly and becomes very sore. My hands are quite shaky (anxiety probably) The muscle cramps in feet and calves and hands worry me because a lot of the people on here stated they noticed cramps sometimes YEARS before diagnosis. Still waiting to see neuromuscular specialist. I can still do everything I need to do, but I do notice fatigue and less strength, but like I said it could be my mind being powerful. These twitches are very insistent though! My arms will also shake (left mainly) when I lean on them. I have read some posts where twitching is initial. But for the most part I read things that lead away from that. I'm just anxious about these twitches especially in my thigh because they feel like creepy crawlies in there.

 

[affected]

I think you are better off seeing a specialist and then reporting back what they say.

None of this sounds like ALS, and it's sounding less like ALS every time you post, so you need to get doctors on it, rather than internet strangers. All the best.