Status
Not open for further replies.

Lolita

Member
Joined
Nov 10, 2012
Messages
19
Reason
Learn about ALS
Country
US
State
Florida
City
Mary Esther
Hello, 30 year old mom of 2 young children here. Was very physically active and was 9 classes away from my undergrad degree. Sometime in June as I was walking upstairs my muscles started to slightly burn and felt breathless..this went on several times. avoided it. Then in August a whole host of symptoms came on..sort of like an onset episode of something that I know are not associated with ALS. Tingling, blurred vision, electrical sensation in legs, shortness of breath, twitching, and an occasional one leg jerk. Probably 3 weeks later. Those symptoms went away, but the twitching, leg/body jerk, muscle burn/fatigue, and breathless remains. The shortness of breath comes and goes, the twithching and occasional leg/body jerk is everyday. The twitching is all over plus one spot below my lip going on for over a week.
Blood work shows slightly elevated MCH 33.7
Lumbar puncture shows slightly elevated protein..no MS or lymes.
1st EMG by neuro says abnormal study w/electrophysiological evidence of left chronic C8-T1 radiculopathy.
2nd EMG by neuromuscular specialist does right arm and leg only and says normal! and no ALS..
MRI brain is Normal
MRI lumbar Normal
MRI cervical shows C3-4 spondylosis w/limited bony and disc protrusion beyond w/ mild to mod. central canal stenosis, potential ventral root effects and cord effect w/o gross malacia.
C4-5 slight bony and limited to mild focal disc w/ mild to mod. central canal stenosis.
C5-6 slight bony and limited focal disc protrusion central right paracentral canal stenosis potential ventral root and cord effect w/o gross malacial.
C6-7 slight bony and focal limited disc protrusion central left paracentral w/ mild central left paracentral canal stenosis potential abutment effect of ventral roots and cord; non malacic cord.

So..Even though my neuro says I've got some arthritis in my neck. I'm guessing that what all that MRI cervical means. He says possible early ALS. He said could be pinched nerve in my neck, but that would not cause my trouble breathing and would usually only cause symptoms in my arms. I see a neuromuscular specialist at Schands in Gainesville...and he says this is not ALS, but he didn't see all my test because somebody screwed up and didnt upload my medical records I have sent. He does and EMG of just the right arm and leg and says normal. He doesnt know why I'm having shortness of breath either. So finally I got an appt. at Mayo Clinic in Jacksonville on Jan. 2...I'm just confused as to whether this is early ALS and the neuromuscular said no because I do not fit all 3 criteria for diagnosis. Whatever it is I just need help for my trouble breathing and burning muscle and leg jerks. I'm also very forgetful..I'm just praying to live. All I can think about are my kids. Could this be early ALS? opinions you all....
 
Well the word stenosis means a narrowing, so pinched nerve is possible. I wouldn't worry until you see the doctor. Enjoy your holidays and try to put this on the back burner. Everyone here is pulling for you and ready to answer fears, anxiety and questions.
 
Hi Lolita, I really don't know if your simptoms may be early als related, certainly there's something wrong with you but try to stay positive because you've already had clean EMG and this is a good thing. Wait for the Mayo evaluation, January is not so far and they will be alble to give you answers. I understand how u're feeling because i'm a young mother (33 years old) too and obviously i'm very scared for my son and my future. Hugs from Italy
 
I'm not at all sure how on earth your first neuro could come-up with "early ALS" given what you have shared. The findings of your first EMG indicated a radiculopathy, which would be consistent with your sensory symptoms and the fact that your symptoms come and go (this can occur with a radiculopathy). Put that together and ALS should have pretty much been off of the table.

Calm yourself and let the neuro's at Mayo determine what is happening. In my opinion, ALS shouldn't be a concern whatsoever . . . and to be honest . . . your first neuro should be kicked and punched really, really hard for even suggesting it. Your second neuro knows what he/she is saying, given his/her findings, along with your history. I'm sure your third neuro at Mayo will concur with your second neuro.
 
Wright, where's your pretty face? ;)
 
Ms. Pie

Wright's pretty face is gone in favour of Famdamily's gift to him of an avatar.

Come back Wright!
 
I have recently been given a confirmed diagnosis but from what you are saying I would not make any assumptions at this point. As hard as it is...if you are feeling ok put it out of your mind until you go to the Mayo clinic and get more definitive information/answers. This is something that is very hard to narrow down and I think there are still a lot of questions in your situation. Hang in there!
 
Lolita, it's unfortunate that you have a prat for a neurologist. ALS should never be mentioned unless there are no other options on the table. As Wright said...........

Glad you went for a second opinion.
 
Thank you Vickim..
 
Thank you and Hugs....
 
Thanks Wright. Made me feel better : ) I agree he should have never mentioned it. I probably would be living out my normal routine and wouldn't have withdrew from the semester.
 
Your MRI suggests your problems are related to your spine. There is narrowing, which could be causing all your issues---

The breathing is different. See a respiratory doc for that issue.
 
Status
Not open for further replies.
Back
Top