Just wondering and scared

[BNH4.6]

The last year has been filled with many odd and unanswered things. I am into bodybuilding as a hobby. About 8 months ago I started noticing my form was off no matter how hard I tried I couldn't get the left side to match the right. Fast forward a few months, fatigued during normal activites, out of breath with minimal exertion. I'm used to working 11 hours manual labor or and then 2 hours in the gym while taking care of my 6 year old daughter alone.

December last year I had 3 episodes where my body shut down. Weakness and fatigue was beyond anything I've experienceed. My muscles are tight but no "pain" just tight rigid and slow to relax after any movement. I noticed wiggling in my feet, calves, lats, quads, triceps. Inflammation was high, tendons pulling, joints swelled, and it felt as if I had destroyed my body in the gym without proper rest and nutrition. I pay close attention to my exercise and diet. I weigh my food.

I've been out of work for 4 weeks, my left foot hangs oddly and I'm limping for no reason. I cannot stand up without helping myself by walking my hands up my legs or holding onto something. I cannot stand on my tip toes anymore, I cannot move my feet correctly, I cannot do more than a few body weight squats. A year ago I could squat over 400 pounds. I have a hard time holding cups or washing dishes. My calves, hamstrings and quads wiggle, pop and pull once they actually relax.

I've had blood tests, numerous doctors and the last was a rheumatologist but she thought I needed further testing because of my severe weakness. Pain is minimal, great weakness is forefront. I'm going to have emg on the 19th. I'm not a weirdo or a hypochondriac hoping for a diagnoses. I'm honestly scared. Does anything I've mentioned point to ALS? The doctors look at me and my blood work and don't say much. They say this is serious and that's all I know.

 

[ECpara]

You have something going on for sure. Seeing a neurologist and getting an EMG will answer your questions. You could easily have injured yourself working out, but I can totally understand the stress you're under. And waiting is no fun. Although my husband's ALS presented much different (bulbar onset), there are elements you mention that could be ALS and others not so much. We will want to hear back from you after your test results. Good luck!

 

[BNH4.6]

Thank you, I do have difficulty breathing on the slightest exertion an a tighness in my throat. Almost as if peanut butter is halfway down my throat without water if that makes sense. The thing that caught my attention was the inability to move my toes and when I try to raise my feet in bed or chair I can only get about a inch of movement and that's it

 

[Dusty7]

"I cannot stand up without helping myself by walking my hands up my legs or holding onto something. I cannot stand on my tip toes anymore..."

These are "fails" and not "feels." You are doing the right thing in getting an EMG tomorrow. Hopefully your weakness is from a pulled muscle or pinched nerve. The EMG will put you on the right course. Good luck!

 

[gooseberry]

The doctor should be able to tell you something about the emg while you are there. Is someone going with you? Always good to take someone along when you are nervous.

 

[BNH4.6]

Thank you, I'm very scared and nervous. I failed the barium swallow. I had 3 people, doctors I guess doing the EMG. I kept hearing the word lower something. They did my legs arms and back. They said I had atrotrophy in muscles. Something about deep reflex high, some other reflex slow. I guess I failed that too. They wouldn't tell me what was wrong.

My doctor was going to admit me but talked to the head resident neurologist and they said they can do more in depth testing in the outpatient facility here on campus (Emory) instead of the hospital. I come back at 9:30 in the morning. She told me I should get some answers tomorrow. I asked if it was muscular distrophy or multiple sclerosis, she said no. She said it's important to be evaluated and she hugged me. She gave me a prescription for Xanax. She said she just can't tell me what she thinks it is it's beyond her relm.

What testing will they do? Will it suck as bad as the EMG?

 

[BNH4.6]

My dad drove me. He's driving me tomorrow too. My dad is my hero

 

[MaxEidswick]

>What testing will they do? Will it suck as bad as the EMG

Nah ...

 

[Nikki J]

I am sorry that you got no clear answer Not knowing is awful. What tests might they do? MRI if you have not had one maybe. That is easy. Possibly spinal tap? Did they say anything about no aspirin or motrin? It depends what is on their list for might be. Pulmonary tests? ( again easy)
Will be thinking of you tomorrow. Please let us know

 

[BNH4.6]

I had a pulmonary test 2 weeks ago. Inhale was good exhale was lower. It was hard to do because I would get to trembling and I couldn't keep a tight seal with my lips. Spinal taps are not fun! I had a lot of those and bone marrow tests when I was younger. I battled acute Lymphositic leukemia from 8-14 years old. My dad was there every treatment chemo and hospital stay then too. I'm now 36 and have that scared feeling I had when I was a kid. I know what being sick feels like. This just doesn't feel like I'm tired or have a pulled muscle, it's an odd feeling. Didn't say anything about aspirin or Motrin. I won't take any just incase

 

[Clearwater AL]

BNH4.6, in your original post you said you were having an EMG on the 19th... did you have it today?

 

[Nikki J]

Yes Al see his 425 post.

 

[Clearwater AL]

Darn... I guess I need to slow my scroll wheel down to one line per click. I apologize.

 

[BNH4.6]

It's ok, you made me smile. I'm crying, but you made me smile. Thank you

 

[Nikki J]

Sending you a virtual hug. We have your back!