Als? Please help

[Daryen929]

Hi everyone,

I am a 27 year old woman. I have had a ton of symptoms the last year and am really concerned about als. Google hasn’t been very helpful except making me more worried. So I was hoping someone could tell me if they think this is als or not. So my symptoms started last winter. I had muscle weakness in my legs. I also would have this full/tight feeling in my neck and under my chin. I saw a neurologist who did an mri and he said it looked normal. I didn’t think much else of it. My symptoms subsided over the summer and are now back. I have muscle twitching all over my body(face, arms, legs, back, abdomen, tongue,) everywhere. The fullness feeling is back under my chin and my neck feels weak. I also have weakness in both shoulders, forearms, and both shins. Sometimes my muscles are sore to the touch. Especially in forearms. And just recently I have had some issues getting food down. It seems to be getting stuck in my chest area. I have an emg done last month along with blood work and urine. It was all normal. Does anyone know if this could be als or not? Or any insight on what could be going on. I am really scared about als

If someone could please provide some insight on if any of these symptoms sound familiar or have happened to them I’d greatly appreciate it. I really need someone’s advice. I also saw a rheumatologist who ruled out autoimmune diseases. Along with the above listed symptoms, I have been experiencing tightness in my shoulders and all over shaking feeling. I appreciate any insight or help I can get at this point.

 

[lgelb]

Fluctuating/diffuse issues such as you describe, coupled with a normal EMG, do not accord with ALS.

I would start over with an internist to see if there is an explanation worth exploring, but if s/he does not perceive clinical weakness, don't be surprised if s/he suggests a specialist in mind/body issues rather than continuing to look for disease. These are tough times and many people with feelings such as yours are at worst getting over a virus and at best tricking themselves into hypervigilance.

Best,
Laurie

 

[Daryen929]

Hi Laurie,

thank you so much for the reply. The emg I received was my entire right side. Arms and legs. No Bulbar though. Would it pick up bulbar onset still? Also, my Symptoms seems to be getting worse. Especially jaw fatigue, tightness in neck and throat( it from under the chin to back of neck) sometimes it puts pressure on my ear causing an ear ache. And the fact that I have to drink fluids to get food down is very alarming to me. Do you think I should get another emg for Bulbar?
Thank you again and I appreciate any information you can give me

 

[lgelb]

Onset is onset.

In ALS, the EMG shows abnormalities in many areas, not just those that have issues. Besides, you were clean in areas that did have issues.

The fact that you perceive issues worsening does not mean that they were anything to start with, let alone that they are becoming something serious. I am not being dismissive, but that caution is based on fact.

The first place to go for a swallowing problem is an ENT.

 

[Daryen929]

Hi Laurie,

if I could just ask one question about Bulbar symptoms. I know you said go to ent and I made an appt it’s not for a few weeks. I don’t have issues swallowing, but I feel as though food is getting stuck in my chest and I have to drink water to wash it down. My chest has been feeling super dry. And my neck feel extremely tight in the front. I’ve read about people with Bulbar getting misdiagnosed with gerd. Do any of these symptoms worry you? Just looking to see if anyone else had these symptoms since I didn’t get an emg done on tongue or neck

 

[lgelb]

No, they don't. As I said, the EMG would have picked up ALS, bulbar onset or otherwise. The nerves begin to die before you even know anything is wrong.

I have never heard of these people with bulbar onset who were misdiagnosed with GERD, if their symptoms were enough to get an EMG. You had the gold standard test for detecting any kind of primary nerve or muscle problem, not only ALS.

Drink more before eating. You're in a dry winter. Change your furnace filters. I don't understand what your chest feeling dry means, but the ENT will be able to tell if you have an infection in your neck (unlikely).

Sleep and stress can be a big factor in this, so get off Google and look at your environment and lifestyle.