Update

[miss91]

Hi everyone,

I did go in and see my neuro today regarding all my rude symptoms. I let him know my weakness has greatly increased and I'm having a lot of pain in the atrophied foot. He did a quick check of reflexes (said they were ok, yet my feet did nothing with the Babinksi AS usual), said my strength hadn't changed much in the last weeks, then I showed him how my legs and stomach shake with any exertion. He sort of mumbled how the EMG was ok, but he was going to refer me to Mayo Clinic. AND he was going to request an URGENT appointment. Should get in during the next 4 - 14 days. I mentioned how I feel like I don't get enough air, but he had me breathe in and out, count down whille breathing out, and that seemed fine. He sent me for a chest Xray.
My husband has missed tons of work for me already so I brought my dad with me today (hubby will go with me to Mayo). He let my neuro know that just because I am walking and can stand up doesn't mean I'm fine - he said "I don't know if this helps, but my daughter is NOT the same strength and health she was just a few months ago".
This is all so weird. I thought I'd have to beg my neuro to get me into Mayo - but he wanted to do it on his own, and urgently. Either way, maybe I'll get some answers to my wacked-out body.
Oh and I have such a huge muscle loss ALL over my entire body! I have eaten like a hog on purpose lately, and have gained back most of my weight, but it's not muscle dangit.

 

[KANSASTOM]

If your daughter is not feeling well either, maybe you should look at your enviroment. Maybe something is going on in your house.

 

[tms23]

Hey miss91,
I have the same thing, my legs (and arms) and stomach shake with any exertion (of course I have all the other symptoms u have like fasciculations, pain,...). Some said the shake is due to permanently anxiety and some say it is due to weakness in torso. I think an hope it is due to anxiety.
Tim

 

[Moonmark]

Hi Missy,

Good luck with your appointment at Mayo Clinic. That's great that you are getting in so quickly. I am feeling pretty frustrated myself. I have had a lot of weird muscle pain in different spots over the past week and just when I thought the twitching was gone, it returned with a vengeance today. I had a horrible stiff neck and headaches the other day.

This morning, when I stood up, I had a sudden sensation again of weakness in the left hip, like I was going to fall. At the same time I had this rapid twitching all around my mouth. It almost felt like I was having some kind of seizure-like episode or something. I wish I knew what to do or where to turn next.

I hope you get some answers soon.

Sandra

 

[hopingforcure]

good reflexes, well that sure does point away from ALS, that and a clean emg. I am really betting against ALS, something treatable sure could be the answer. The nothing happening in the Babinski sign, means it is normal.
I want to make you feel better, No babinki, no clonus, clean emg.. No UMN problems, No Lmn problems, sure does not sound like ALS..

 

[miss91]

Thanks everyone. Hoping I do have pretty bad LMN symptoms (nonstop fascics, shaking weakness, atrophy in foot/hands/wrists that is spreading, and allover muscle loss). I don't know if a muscle jumping is LMN or UMN, but I have that - where my hand will just jump a little, or my foot does.
The worst part is the mornings for me. I feel like I'm in a coma with weakness and can't come out of it. I keep waking up/going back to sleep and having really weird vivid nonsense dreams in between. I can only get up when I force myself out of it. Also I have disgusting nausea that lasts all day long. I thought perhaps it was related to breathing but i never have morning headaches.
I feel more shaking/weakness today. Talked to Mayo and they haven't received my dr's info yet, so I left a message for my dr to let me know the status of everything so Mayo can get my appt. set up.