Marcelian part 2

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Marcelian

Member
Joined
Jan 31, 2019
Messages
11
Reason
Learn about ALS
Diagnosis
00/0000
Country
HU
State
HU
City
Tübingen
Dear Everyone !
I was here before last year, and still has no definitive diagnosis. I started with muscle twiching+cramps on 2018 Dec. I noticed something is went wrong. After that is spread to body wide symptom. On that time I also felt my right hand a little bit different. I had several laboratory studies to rule out another major diagnoses.MS,Polymiositis,neuropathy etc. I had labtest for everything they screaned tumor's I had EEG,EMG,ENG,MRI,X-RAY etc.Since than I went to 7 neurologist. On the EMG I have Polyphasic waves, and fibrillations,fasciculations, and increased insertion activity in every muscle.Motor unit potencials and NCS is negative, I have fasciculation everywhere 7/24, my AChR antibody is positive, but I have no specific sign of Myastenia Gravis. I dont have real weakness, just sometimes I feel on my right hand is a little weaker than the another side. Some days have a problem with lifting things some days absolutely not. Since one mounth I have back pain only during the night and both hand numbnes also during the night. Sometimes my feets also go numb, after walking and etc. I know the numbness is not typical for ALS. Iam very sad, and stressy and afraid becaues they dont know what is my problem..Right now my neurologist sent my blod to genetic testing for Kennedy disaes. Please let me know if anyone heard about this kinda story...I know some of you are not doctors, and even this forum is not a long distance Dr Who, but please give me some more adds. Thank you for sour kindness.
 
Previous thread here Marcelian's post

did you have another emg? The one you previously posted did not show ALS Can you post a new one if you had it?
 
Heya Nikki ! I had yes than I had several, I dont have the table with me. NCS is negative, still have fibrillations'-is very scared me-and fasciculations-everywhere- and increased insertion activity in every muscle....
 
It doesn’t sound like ALS with fluctuating symptoms, numbness, and no real weakness. People with ALS can expect real weakness starting in one area and spreading to other areas. There is failure to perform certain actions and tasks which gets worse as weakness spreads. You’re not describing that pattern.

What is important when it comes to diagnosing ALS is the big picture: clinical weakness as determined by a physician, characteristic EMG changes in multiple muscle areas, upper motor neuron signs, evidence of disease progression, and ruling out ALS mimics. There are many conditions which can be mistaken for ALS. Some are hard to diagnose. Keep working with your doctors.
 
Thank you so much Karen! Why I have fibrillation, and this hyperexcitability? Which condition is similar...any suggestion?
 
Last edited:
That would be a question for your neurologist.
 
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