Back muscle atrophy and scared

Jselliott07

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I’m not even sure where to start I’m just so terrified. I’ll start with saying I appreciate everyone’s time and effort to share wisdom and knowledge with me. I’ve had a very uneven back muscle for possibly a year now, not 100% sure. I just noticed it one time and it has just continued to vanish as time has gone on, despite my working out and weight training. I’ve also had fasciculations that started out of nowhere about a year ago as well. You name the spot, it’s twitched and tremored. I went to a neaurologist and they did an emg about a year ago that they said was ok, and just recently did he recognize the one sided back muscle atrophy and sent me for an mri. He said the mri looked ok and hasn’t had anything to offer me since, but all the while my right side of my back is diminishing and I feel it’s also in my shoulders and hands. I even have indentations on that side where there is just no muscle there. I don’t know where to turn or what to do. I have 4 young kids and am terrified of the possibility of als. I tried getting into Mayo to be seen but they denied me, my docs here are no help and I just don’t know what’s happening to me and where to turn. Anyone have any ideas or advice? I live in the Midwest and just don’t know if this is als or not.
 

lgelb

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You've been here for a year, and evidently, neither you nor your neurologist have seen signs of clinical weakness or loss of motor function, or changes in muscle tone. Twitches and tremors without a clear reason can often be improved through more attention to and tinkering with sleep, nutrition, hydration and exercise.

Four kids can cut into your workout time, which in turn can affect muscle shape and size. If your back started uneven, it's not surprising it would still be. None of us is completely symmetrical. Presuming you are working with a PT or trainer who can also help you build/track bulk, that person should be able to reassure you that if you really had "no muscle" in a given area, it would not function normally.

Best,
Laurie
 

Jselliott07

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Yes I put this on here bc I got the mri test but still no answers. Hoping to see what else I should do
 

lgelb

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My advice would be to continue with training or PT to feel at your best, if it helps. If you are still worried about ALS, which there doesn't seem a reason to be, I would suggest consulting a counselor to talk about what might underlie and allay your fears. You can do sessions by video these days.
 

Jselliott07

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The worst of all my symptoms are these uncontrollable muscle jerks. I’ll be trying to rest ir sleep and my body will jolt or my head will jolt or my arm or leg will jump dramatically, it goes all night long making it so I can’t sleep at all. 100% not normal and I don’t know what to do. Had a sleep study that was no help but these muscle contractions are literally wrecking my life. Anyone ever heard of this?! I’m so desperate. I don’t know if this is the als realm or something totally different but seems very neurological and nerve/muscular in nature.
 

lgelb

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Those jerks at night at rest suggest the possibility of restless leg syndrome, periodic limb movement disorder, or a related sleep disorder. These are not related to ALS, but can be diagnosed with a sleep study, which you say you have had.

Do you take any medications or supplements? Some can have those kind of side effects. Of course, they can also relate to just plain stress that prevents you from falling into deep enough sleep on the cycle that others do.
 

Jselliott07

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I am getting very very scared here. I have one sided muscle atrophy and noticed today I also have muscle loss on my legs/side quad area. Twitching non stop all over, hard time swallowing with excess mucus that I can’t seem to swallow and I’ve been trying to push past it but my muscles are just continually giving out. Leaning back on my arms they get shaky and give out, same with my legs when standing too long as well. I feel like my neuro has dismissed me and is overlooking something and it’s just terrifying. I don’t know where to turn or what to do. I tried getting into Mayo but they denied me, any other places I should try?
 

Nikki J

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You said previously your docs ( plural) were no help. In other words they do not see clinically what you do. If you do not trust your doctors ( ? Neuro and pcp?) find new ones but if you have been going to multiple neuros and have a good pcp go to them. If they don’t validate what you think you see then you really need to reassess. Atrophy and clinical weakness are well within the skill set of any physician to detect
 

Jselliott07

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My primary care doesn’t know what is going on. He said he’s kind of explored it all and isn’t sure what is going on, so he’s deferring to the neuro. I feel like the neuro looks at me (I’m thin and have always been strong) and dismisses me. My “strong” now is no where near where my normal was but he doesn’t know that. I had an emg done at the beginning of all of this and they said it was ok, but so much has changed from then until now (I think it was about a year ago), I’ve declined dramatically that I feel like the emg was done before I was super symptomatic and might not be accurate anymore. I’ve done the things they told me to help (anxiety care- since I’m a woman they tell me I have anxiety and I don’t- but either way, I’ve taken the steps to lessen it. Increasing water. Increasing iron. Magnesium.) but none of it has helped at all and I’m still getting weaker and more fasciculations and muscle loss.
 

Nikki J

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Then ask for a second neuro opinion. But if they don’t find anything be prepared to accept it. 2 opinions are reasonable if your pcp sees a problem but can’t diagnose but don’t turn into one of people we see here who have been seen by multiple neuros and have had multiple duplicate work ups all saying no
we can’t see you nor can we make your doctors act differently.
 

Clearwater AL

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Jselliott70, per what you wrote…

“I tried getting into Mayo but they denied me.” That is simple to
understand… they concur with your doctors and Neurologists
after Mayo reviewed or consulted with them.

Then…

“since I’m a woman they tell me I have anxiety and I don’t.”

(“and I don’t”) Severe health anxiety can overwhelm any attempts to
address it.

Often that is called denial. The doctors and neurologists have
seen enough of it they easily recognize anxiety when they see it.

As Nikki wrote, go for another opinion... even though Mayo turned
you down. Yea, you may find another Neurologist to see you... they get
paid well, they'll do the tests, run up the tab but in the end they have
to give you an honest answer. If (big if) you have another EMG post the
summary/conclusion at the bottom of the report. No need to post any
previous ones because you said they (it) was clean.

I hope something comes along that will help you.
 

Jselliott07

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As of 2 days ago it seems I have done something muscular with my back. I am in excruciating pain, can’t bend over and shooting pain down my leg and up my back. I have read some people having issues like spraining an ankle or throwing out their back and it springing their als diagnosis up, bc the muscles are becoming weaker, and that is my concern here. The fasciculations have increased, the left arm weakness has increased and now my back (along with the muscle atrophy). This has brought me even more concern and fear that something is majorly wrong. Is this something I should alert my neuro to and does this feel like an als concern/symptom?
 

lgelb

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I'm sorry that you're in pain.

By definition, if you have some muscular issue in your back that is caused by something you did, like bending or twisting, it has nothing to do with ALS. You can't bring ALS on or damage motor neurons by doing something like that. You may have a back sprain/strain or have damaged one or more disks. But it doesn't necessarily connect with your existing issues. New pain tends to aggravate old pain.

I would talk with your PCP first to try to get a handle on the chicken and the egg, and see if s/he wants you to try a muscle relaxant. If s/he wants you to call the neuro, then you can always do that.
 

Jselliott07

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Thank you for your response. The crazy thing is I didn’t do anything. No bending, no fall, no funny twist or weight lifting, it literally just happened. I think that’s what’s most concerning to me about it. If it was a reflection of something I did or an injury I would have an idea of the cause, but it was just out of nowhere. Just makes me very scared and worried about the state of my muscles/strength and the possibility of what it could be. Just a weird and scary spot to be in. It’s hard to stay positive and happy with all these symptoms, and I know I have a lot to be grateful for, I guess I’m just scared of what the future is holding if I’m having all these things that could point to something devastating.
 
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