Nervous about ALS

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DanielleD

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Hello,
Thank you all so much for the time and effort you put into answering questions from those of us who are simply afraid.

I will preface this by saying I do have an upcoming consultation with a neurologist and also that my husband is an orthopedic surgeon.

I am a 41 year old female. I am 5 foot 6 and 109 pounds so I am slight and athletic.

I also do have medical anxiety to be perfectly honest , But I am experiencing physical symptoms. While my husband has tried to reassure me that he thinks I’m fine I’m pretty sure he would tell me anything to get me to calm down. He does not see or feel any weakness when he looks at my upper body which is where I am experiencing the bulk of my symptoms.

So what I have noticed definitely starts with the pins and needles tight feeling in my hand all the way up my arm. Originally I thought it may be cell phone elbow or ulnar nerve entrapment or possible a combo of carpal and cubital tunnel.

I notice The pins and needles and tingling mostly at night but sometimes during the day. Also a little pain in my elbow but what concerns me about ALS the most is a feeling of weakness in my forearm. Sometimes the feeling of weakness also radiates up my arm towards my shoulder. My arm feels very heavy and waited down like I am trying to punch through water and the pins and needles are maddening when I’m trying to sleep no matter what position I put my body in. Massage tends to make it feel a little bit better. my left arm just doesn’t feel like it used to. I still have a grip that doesn’t seem to be changed and my husband says he doesn’t feel any weakness when he does his version of an upper motor neuron exam.

My question is does ALS often include the obvious pins and needles feeling which tends to go away with movement? I also feel as though I have weakness but I can still lift things... so I’m trying to wrap my head around perceived weakness versus actual clinical weakness and also trying to think of what else this could possibly be. I’m sure I’m driving myself crazy and my anxiety is making it worse. In general my arm just feels very tired which is odd for me because I am quite athletic and I can’t think of anything I’ve done recently to exacerbate it. This is been going on for at least three weeks.

Sometimes I read that pins and needles is not associated with ALS and sometimes I read that it is,

Thank you much.
 
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I am sure the upcoming appointment will be reassuring as regards ALS.

To clarify for others, your upper body is not the same thing as upper motor neurons. Everyone has both lower and upper motor neurons that control muscles all over the body. ALS entails damage to both types. From what you describe, you do not have the motor neuron damage that would be seen in ALS.

Often poor positioning or an overuse injury in bed, at work, and/or in a sofa or chair is responsible for pins and needles and the feeling of weirdness or weakness. It is very treatable.

Best,
Laurie
 
Thank you, Laurie. I appreciate your response so very much. It’s is confusing and I think my husband gets frustrated with me when I pepper him with questions after the has already had a long day .

So from your experience and I know you’re not able to diagnose me here but would you say from your experience that this does not sound like a LS?So from your experience and I know you’re not able to diagnose me here but would you say from your experience that this does not sound like ALS ?

The pins and needles are obvious but they do come and go. The feeling of weakness in my arm I believe is perceived because I can still do tasks I normally do… It just “feels “ tired but I can still perform activities.

I keep telling my mom it feels like my left arm Weighs 20 pounds more than my right arm .. it feels tired but when I needed to perform a physical task it does what it’s supposed to do.

If it were truly a symptom of ALS, wouldn’t it be that I was not actually able to perform those tasks? I am so sorry if I sound repetitive. This is just the first for I have come across the offer any sort of useful and intelligent information.
 
You can sit yourself down with a cuppa and read this really carefully, try reading twice.
Maybe ask your husband to read it too, so he can be sure to help assure you why the points are spot on.


PALS don't feel this weakness nor tiredness, they are totally surprised their body refuses to do what it should.
I hope that post we created to help people like you who need details will help, and it helps our terminally ill members and their carers not have to repeat the basics over and over.

I hope you can get a diagnosis soon and start a strategy to heal up.
 
I did say just that, that it does not sound like ALS.

And you are correct that "an arm that is feeling tired but still able to do everything" is not a typical ALS onset story. PT or even therapeutic massage can do wonders in many instances. The neurologist can refer you if/as s/he thinks it appropriate, or refer you to another clinician who is better equipped to diagnose you -- which could even be an orthopod.
 
Hello… I apologize if I am not posting in the correct place. Today I upgraded to $20 a month member status and I’m not sure if I am posting here correctly or not so if I am not I do apologize.

I had a question to follow up because I am still nervous about ALS. I do have an appointment with a Neuro on December 6 and I am having an MRI of my cervical spine on Wednesday of this week.

Today I took some advice and went for a massage. I was hoping it would relieve some tension in my neck and maybe therefore the weakness and tingling and numb feeling I’m getting in my arm and hand. However something very strange happened and I’m wondering if this could potentially sound like anything anyone who has been diagnosed with ALS has suffered from?

When the therapist started to massage the arm that is bothering me, he started to vigorously massage in my upper arm area sort of between my armpit and my elbow. I am a very thin person so he is kind of able to get his hands right in there. Anyway as soon as he started to do that I experienced some theory intense electrical shock type feelings down into my hand and fingers in my fingers started to move all over the place without me doing it. Instead of being able to enjoy the rest of my massage I instantly begin to worry that this type of involuntary movement could have something to do with ALS. He was really vigorously rubbing the arm that is affected and I just have never experienced anything like the electrical shock and involuntary moving of my fingers. thank you so much for any advice.
 
I have merged your threads. As an undiagnosed person you are allowed one open thread in the cihals subforum. That is noted in the read before posting thread you were asked to read.

no electric shocks and involuntary movement as you describe do not sound like ALS and are not anything my family or I have experienced
 
Thank you for your reply, Nikki and for merging my threads. I apologize if I went against the forum rules in anyway. After I went in and upgraded my account I was not sure how to get back into my old thread.

Just to clarify my post… I have been experiencing tingling and numbness for about a month. When I went for the massage today it was like nothing I had ever experienced before. When he was touching the inside of my arm it was like electrical shocks… It was very unnerving and I appreciate your response very much. I’m hopeful that the MRI of my cervical spine shows some reason for it the sensations I have been feeling.
 
Nope.
Thank you for supporting the forum financially, however this is probably not a healthy thing for you to do.
I think you need to talk seriously with your husband and doctor about your persistent fears regardless of how many reassurances you are receiving. Pins and needles are NOT ALS and no matter how many different ways you try to ask this, we won't give a different answer I'm sorry.
 
You don’t need to apologize. I should. My best friends son was recently killed in a car accident my ex-husband received a terminal diagnosis of a central nervous system primary lymphoma two weeks later. I then had to have two Excisional biopsy‘s after an abnormal mammogram. Needless to say it has been very stressful and I’m sure it is playing on my already tormented health anxiety. I recently started taking a low-dose Prozac to help try to dig out of the hole. Your forum helps a lot of people in more ways than one and small monetary donations that I can make seems so tiny compared to what I would like to be able to do for people in this forum.
 
Good morning… I just thought I would report back today that I had my appointment with my neurologist. He was not overly forthcoming with information but he did notice that I had some reaction to the spurling test. I have an EMG scheduled for tomorrow. I’m a little nervous about this but also hopeful. I do have a question regarding the EMG if I may ask? I have noticed some occasional twitching in my left thumb when my hand is at rest. It is not all of the time. I often notice it when my hand is extra tingly that day. Maybe a few times a day? It is not constant.

1. if the thumb twitching was due to ALS, would I also have clinical weakness associated with it if it had gotten to the point of twitching?

2. The doctor is considering a diagnosis of cervical radiculopathy. Just curious if anyone knows if this could cause the thumb twitching? When I asked my doctor he said possibly but not always.

Thank you
 
Great, I hope the EMG allows you to settle your fears
1 - yes, please go back and read the post I directed you to at the start for more info
2 - possibly, just like your doc said
3 - twitching means nothing

Your husband is a doctor, surely he can answer these things in detail?
 
Thank you. He tries his best. He is an orthopedic surgeon with specialties in the foot and ankle but he did refer me to one of his partners for upper extremity… Still ended up at the Neuro today.

I suppose my only other question is very general but I couldn’t find the answer to it when I searched through the earlier posts....

Can an EMG and nerve conduction study differentiate between an ALS diagnosis and other issues that can cause a dirty EMG?
 
Nerve conduction abnormalities are not characteristic of ALS so anything seen there points away Cervical radiculopathy can sometimes show as acute and chronic denervation but unlike ALs will be unlikely to be widespread unless you have multilevel disc disease. I am sure your husband and neurologist have said both the spurling sign and your sensory complaints are consistent with cervical radiculopathy. They are not consistent with ALS
 
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