Status
Not open for further replies.

JennyK

New member
Joined
Jan 9, 2017
Messages
2
Reason
Learn about ALS
Country
US
State
NC
Hello all,

I have read the stickies and appreciate all of the knowledge on this site and the people here who are so helpful. Thank you for organizing this.

I've had symptoms for 2 1/2 months. I have an EMG this afternoon. Concerned bc my calves, mainly my right one, have been twitching this whole time. My right calf is almost 1" smaller than my left and just looks different (less muscle mass) then the left. This is right where most of my twitching is. A ton of my symptoms leading up to this resemble MND symptoms, while others may not. Just wanted to hear some thoughts, if possible.

Started 2 1/2 moths ago, one night my entire left arm violently twitched for 2 hours before bed. 3 nights after that, my back between my left shoulder blade and left hip violently twitched from 3-5 a.m. A few days after that, I noticed pain/tingling (I know, not MND signs) in both my arms/hands and back of legs/bottoms of feet. This went on for about a week. After it let up a bit, my hands felt like they were hit with a hammer on the tops of them.

The body wide twitching started, here and there in most parts, but constant in calfs. My hands got really clumsy, I dropped everything. I am a pretty strong 39 year old female - volunteered to watch my 5 year old's school guinea pig that weekend... literally could not pick the cage up. A teacher picked it up with no problem and put it in my car. Had to use a wagon to bring it back to school Monday. I noticed my left pinky/ring finger were not really working as well as they should be. Like I used to use those two fingers to catch my vitamins after I poured them, and they just were not going all the way down to my palm.

My forearms hurt whenever I used the for a minute. I pealed and grated zucchini and my right forearm ached so badly and I felt like I could not even use it for 2 days after. The muscles just jumped and throbbed. I thought I was getting Bell's Palsy - over the course of a few days, I had nerve pain/twitching on the top left side of my head, face, eye and I even felt like my gums were twitching.

Still twitching all over body. Had 2 days where I had tons of pressure in my head and my left eye was blood shot. My hands were stiff as all can be waking up in mornings for about a week. Not swollen, they looked fine, but they were so stiff. That went away, only to come back a few weeks after. It's hard to get them comfortable at night... if they are too straight or too curled up, they just need to be moved.

My tongue started twitching. A lot. Even the sides of my mouth and uvula were twitching. I was having pizza a few days after that, and literally almost choked on a piece of pizza... it just didn't go down. Felt like I had to make an effort to swallow any water. I couldn't chew gum - my tongue control with diminished. Felt like I would choke on it. If I opened my mouth up, my lips would have a tremor. Then my feet started to cramp. Out on NYE and it was hard to use my knife and fork... after my hands felt so weird and my left thumb was twitching to the point it was jumping. I've lost about 15 lbs these 2 months. Just no appetite. And I can usually eat anything.

A lot of the things that have happened have come and gone (tongue twitching/ forearm pain/stiff hands/swallowing issues) but the twitching is constant and I'm concerned with the clear atrophy in my right calf. My husband keeps telling me I'm fine, but he was actually concerned when we noticed my smaller calf yesterday. It's pretty apparent.

All test have come back fine so far (MRI of head/cervical spine, blood work, Lyme Western Blot, MG). I even went and had a toxins test done to see if I had come in contact with a pesticide or something since I do the yard work, but nothing. I saw a spine Dr. about 1 week into my symptoms and she put me on prednisone for a week bc she thought I had cervical spine issues... not sure if that affected any of my blood work or not which was done 2 weeks after I stopped the prednisone.

Has anyone experienced any of this? Can MND symptoms come on like this? Like I said, the calf atrophy with the twitching is what's concerning.

Thanks to all.
 
Last edited by a moderator:

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,294
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
Hi Jenny,
Sorry about your fear but the NCS and EMG should be able to rule out ALS and, maybe, point to something else.
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,420
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
Hi, Jenny,

Let us know what the EMG shows (or doesn't). The pattern you describe is not typical for ALS and seems more systemic to me. I would make sure your primary care doc knows about any recent illness or injury over the last few months.

Best,
Laurie
 

JennyK

New member
Joined
Jan 9, 2017
Messages
2
Reason
Learn about ALS
Country
US
State
NC
Kim and Laurie: thank you so much for responding. I just finished my NCS and EMG. Neurologist said I have a neuropathy and no MND, the EMG was fine. Not sure what the neuropathy is from, but I have a follow up at the clinic in a few weeks. Laurie, I do not recall an illnesses before my symptoms began, but I will think back to that time. Thank you so much for reaching out, I appreciate it.

The anxiety around this disease is horrible. I pray for strength for all who are touched by this.
 
Status
Not open for further replies.
Top