Really worried

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Hensleemom

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Thank you so much for anyone who takes the time to read my post . So for the past 3 months I have been having thigh stiffness and leg ,hip and lower back pain on both sides specially the right side. My thigh looks like it has atrophy and now I’m starting to have fasciculations in both legs on and off all day. Specially when I walk or try to flex my muscles. If I try to hold my leg up or flex my whole legs shakes because it’s so weak.it’s becoming impossible to sleep because I keep walking up to my body shaking or it feels like a jolt. I also have Severe arm weakness on and off . Some days I can’t even lift my phone up. I also keep getting a weird bubble like feeling in my throat. Last week I seen a neurologist and he did a nerve study and he said it seems fine and I don’t need a emg but I’ve read on here that a lot of people have normal nerve study’s and still have als. What do you think my next step should be?
 
Are you saying you had a NCS but not an EMG (you had shocks but not needles?)

In any event, what you describe doesn't sound like ALS. If the neurologist doesn't see anything neurological, I would return to your primary care doc for further evaluation.

Best,
Laurie
 
Thank you so much for the reply, I had the shocks but not the needles .The neurologist said he didn’t see any wrong. Would a emg be the next step?
 
The EMG would be if he thinks there is a problem with the nerves or muscles that control movement. Evidently, he didn't see any signs of that.

You are reporting sensory problems (pain) that don't fit with ALS. The NCS would show if there was a problem with the sensory nerves. Also, ALS weakness does not come and go as you describe.

I'm presuming the neurologist told you that there was not a neurological problem.

So it sounds like your problem may be more systemic, and the place to start with for that is your primary care doc, who can track any issues over time, order tests to narrow down the possibilities, and refer you to any specialists that are needed.
 
Neurologists are really highly trained, so if he does not see a need for an EMG there isn't likely to be any need.
What did the neurologist say is the next step.
Anyone who answers that question purely by reading a text post is truly not in any position to do so.
You need to work with doctors, go back to your GP if you are not satisfied.
I wish you the best, you didn't mention any symptoms that are the hallmark of ALS, which seems to be what your doctors are telling you.
 
Sorry it’s taken so long to reply ,I’ve been waiting for a second opinion. My Neurologist basically told me if I’m able to walk into his office I don’t have ALS and at 37 I’m to young . I know that statement isn’t true . My Symptoms are getting worse. I feel thigh ,calf,knees,arms and glutes weakness all day and if I try to flex my muscles I can see Fasciculations all over where I’m flexing . My legs are atrophying very quickly and my thighs are extremely stiff .It’s also very painful it feels like my bones are throbbing .If I walk for even a short distance and sit my glutes spasm nonstop . When I lay down to sleep my body twitches in random spots for hours.Has anyone else had similar experiences before you started having failures? It’s been months of weakness and pain and it hasn’t stopped for even a day. I have not had any failures yet. My appointment with the new Neurologist is January 9th. How long after someone starts having symptoms do you start having failures?
 
Your symptoms aren't like ALS onset at all. Try to stay properly hydrated, stretch daily, and minimize caffeine. In any case, an ALS forum is not the place for you; it seems to be exacerbating your unfounded fears of a disease you don't evidence having.

Please continue to work with your docs. Good luck to you.
 
Sorry you didn't feel that neurologist appointment went well.
While it was not true to say you don't have ALS if you walked in, I am encouraged by the fact that you don't have failing muscles.
Failures is what ALS is about, that's the symptom that is important.
PALS tend to feel totally normal, but their bodies won't work.
What you report, bones throbbing, sounds very different to ALS as it is a disease of the brain and motor nerves, so does not cause anything like this.
Maybe you need to step back a little from pointing yourself at ALS, and consider your regular doctor doing a full work up and looking at other causes for your symptoms.
 
I have my first emg on February 3. In the meantime I just got a blood test done and my aldolase is high it’s at 10.9. Would that be an indicator of als? My legs are still very weak and the atrophy is getting worse. The fasciculations are getting way worse in my calves and foot . Now the bottom of my left foot hurts really bad to walk on and I feel like it’s because my pad is loosing all the fat. Has anyone else had these issues.
 
A high aldolase may be a sign of several conditions, some treated by a rheumatologist. I would expect other labs to be drawn to help clarify the picture, and you might want to ask about a referral or other next steps.
 
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Adolase is not a sign of ALS, nor are any of your other symptoms. The members have told you why you don't evidence a motor neuron disease; you make the choice whether to believe it or not. Yes, that's right, you focusing on a disease you don't have is CHOICE. Please continue working with your docs.

Good luck to you.
 
Thank you to everyone that takes the time out of your day to respond to me. I had my emg on February 3rd the girl that was taking my test was in training and didn’t know what she was doing. She tested 3 spots on my right calf and 1 spot on my arm and said I would have my results by April.

Two days after the appointment my doctor called and told me she didn’t see anything to bad and she will test me again in 6 months and see if I have any failures by then. I’m a nervous wreak. My left leg is extremely atrophied and my calf and foot have fasciculations any time I lay or flex at all. At night my limbs are starting to go numb and feel stiff like they are going to stop working . I can still walk but my thighs are completely stiff and I have no muscle or fat anymore .

My butt feels so tired all the time and it takes so much effort just to sit up for a extended period of time. I’m also having bad butt twitching ,my thumbs are starting to throb and stick now too. I feel like my body is shutting down and I can’t get a clear answer. The neurologist said it could be bfs but would that cause constant twitching with atrophy and weakness? I’m also starting to get gurgling in my throat after I eat and whenever I lay down. I hate being told not to worry it’s just stress. Of course I’m stressed my body is giving up. I just don’t know what my next step should be? Please if anyone has any advice let me know.
 
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The trainee was unsupervised? I have had an emg with a fellow in training and the attending stood in the room and observed.

bfs absolutely can cause twitching and feeling weak.

if your doctor saw atrophy what did they say about it.? And what did the do for the aldolase? Did you ask to see a rheumatologist as was suggested?
 
I have absolutely no idea what is going on with you, but it sure isn't ALS. ALS doesn't cause the issues you are reporting. Also, as Nikki said, trainees do not work unsupervised. So, regardless if she was new, there would be an experienced person in the room.

Your fear of a disease you don't evidence having (not even in the slightest bit) sounds like it's controlling your life and ability to think clearly. Please print out your posts and show your doc. Hopefully, they can guide you where you can get help for your fears.

Good luck to you
 
Feel free to post the de-identified EMG report, but agreed that doctors do not give you a six-month followup if things look dire. You are certainly entitled to ask about what diagnoses are still under consideration and if there is a suggested treatment plan, such as a PT evaluation, that might help you over the next several months. If you think there is atrophy, you can certainly ask about it, even in a telehealth appointment, in or outside your current system.
 
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