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jj93

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Hi guys,
My name is Julia, I have not been diagnosed with ALS, but have had these symptoms.

In Late April I started having clumsiness and heaviness in my legs where it felt like I had elephant feet. Initially I had some numbness from my chin to my knees ( I know this is not a typical symptoms of ALS so I figure its somehow related to my vitamin deficiencies). Later on in May, I developed symptoms of stiffness/muscle tightness in my legs, trunk and arms/shoulders. Clinically, I had increased knee reflexes and reduced wrist reflexes, negative babinski's sign, reduced grip strength. I have not seen my neurologist for almost 2 months and he did not evaluate my strength during my last visit.

For the past month, I have pain, stiffness my right shoulder and it feels weaker than my left. My right arm is noticeably smaller compared to my left. I’m right handed. Hand writing and typing is difficult at work. I also have difficult time lifting things or reaching above my head. I was at work a few days ago and started twitching all over my entire body including my face. The twitching is mostly in my R arm, glutes, calves and quads and has been ongoing since then.

This last week it's been really bad, it's hard to fall asleep. Lately, I have been feeling shaky and it's been harder to walk every day. I feel mild soreness in the areas where I'm twitching. Is this normal? This is really weird, it seems like I was stable for 3 months besides the recent shoulder pain and suddenly I am declining really fast.

Has anyone with ALS experienced anything like this?

Before these symptoms started, I had some neuro workup done. MRI brain was normal (February 2018). Bloodwork was negative for MS and Lupus. However I had slight deficiency in vitamin B12 and vitamin D. Electro diagnostic studies were done on my arms which basically showed I have mild CTS in my right hand and chronic neck problems (March 2018). Imaging studies on my neck were consistent with the EKG of my R arm which was slightly abnormal for my age (I'm 24 years old).

I thought maybe my symptoms were related to my neck problems. In May, I saw a spine specialist who reviewed my cervical MRI and took neck X-ray. In her opinion, my spine did not account for any of my recent symptoms. She suggested that I could have another neurological problem like MS or ALS. In June, I had an MRI of my T-spine done, this came back negative for MS. I am going to have a spinal tap done soon. If this comes back negative it means that I most likely do not have MS. I am concerned that I have ALS because my symptoms have been worsening.

I'm 24 and I live with my parents who are in their late 60s. I'm trying not to scare them but I am almost certain that I have ALS. I don’t have any health benefits at the job I currently working at a part time scribe not to mention the pay is awful even thought i really enjoy it. So I’m worried about financial/psychological burden on my family.

I will see my GP and Neurologist later this month. I'm not diagnosed yet. I hope to get some answers soon. I hope to hear back from you all! :)
 
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lgelb

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Julia, there's a lot of territory besides MS and ALS that can cause twitches and muscle problems. Some relates to the spine and some doesn't. And the only clinical deficit you mention is reduced grip strength, which is explained by the CTS that you say has been diagnosed. Are you doing exercises/PT for that? Have your vitamin deficiencies been addressed?

If I understand correctly, you had an EMG on your arms that did not show signs of ALS. That's the most important fact to set against your fears. So while you may be "almost certain" you have ALS, I'm almost certain you don't. You are in a diagnostic process, but I encourage you, as we always do, to get a second opinion no matter what the outcome.

Best,
Laurie
 

Bestfriends14

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Julia,

I'm certain you do not have ALS and your symptoms and neurological work up back this up. Laurie has given excellent advice and I second what she has said.

Please continue to work with your doctor to ascertain whatever it is that is causing your symptoms. It's not ALS.

Take good care.
 

KimT

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Is there any way family can help you with the cost of getting insurance. Health issues are bound to come up and diagnostic testing, as you probably already know, can be very expensive. Even physical therapy for CTS can cost quite a bit.

I don't think anything you wrote sounds like ALS but any medical diagnostic testing and treatment will cost.

I would discuss your concerns with your parents. Don't mention ALS because that doesn't seem to be on the table. Just talk about medical insurance and your need to address your issues.
 

jj93

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Hi everyone. I appreciate your time and effort in replying to my post.

Laurie,
I originally went to my GP in January for symptoms of carpal tunnel, probably related to over use. In March I had nerve conduction study on both my arms which showed very mild evidence of carpal tunnel in my R hand. The EMG was done only on my R arm which showed some mild chronic denervation at C6-C7 and T1 region. I developed stiffness and pain in my neck. This was improved with chiropractic adjustments.

The symptoms I have now feel very different. I have seen a chiropractor since then and now it doesn't help me at all. This is why I think my neck is unrelated to my current problems. I did physical therapy for 6 weeks for my neck and my hands starting in May. I think it helped my strength in my hands at least temporarily . However after that my upper arms/shoulder became really stiff. Now I feel very weak and clumsy and in my legs and arms. 2 weeks ago I started having crazy twitching in my arms and my hands/fingers feel awful and shaky. I also have twitching in my legs and feet. I feel more clumsy and like my balance is off.

I've been taking vitamin B12 and vitamin D supplements for months and recently added a multivitamin. My neuro did not assess my strength in May probably because I was not feeling weak at the time, but he was fascinated by my reflexes (all he said was "hmm that's interesting" and "I'll see you again in 2 months."). It's really hard waiting especially when I am feeling physically worse everyday.
I think you're right about seeking a second opinion, Laurie. I will definitely do that.

Thanks for your advice Kim, I'll talk to my parents about medical insurance.

Thanks for your help everyone!
- Julia
 

Atsugi

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Julia, there's just no reason to be thinking of ALS.


You "feel" a lot. ALS doesn't "feel" weak.


Forget about all the twitching stuff. Lots of conditions have twitching. Healthy people twitch. Twitching is usually stress. Any recent life changes?



Balance. NOTHING to do with ALS.


PT helped your strength? Great. Because ALS never gets better.


EMG says no ALS. Great. Take it.


At this point, several people who know ALS really well have read your posts, and some docs have physically touched and examined you. We're all in agreement.


I think you're wasting your time whenever you think about ALS. Spend your time looking into something else.
 

lgelb

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I would not return to the chiro -- not knowing what's wrong, s/he can't be sure of not making it worse. And it sounds like you might want to save the money as well.
 
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