ChristineRK
Active member
- Joined
- Jun 6, 2019
- Messages
- 72
- Reason
- PALS
- Diagnosis
- 08/2015
- Country
- US
- State
- OH
- City
- Westlake
Long story short: I had an EMG study by Dr.xxxxxxxxxxxx which showed changes in 4 segments of the neuraxis, also with peroneal nerve conduction block across the fibular head. One thought was if this could be ALS type of motor neuron disease. I had dropped about 40 pounds, had the tremors the uneven loss of muscle mass. Fast forward almost 4 years later and have a feeding tube to ensure proper nutrition and I know my muscles - they aren't even close to where they should be, but my new neuro (2nd opinion) stated that my muscles seemed fine. Whatever. Fast forward to the end of the report:
EMG showed denervation in left leg, right arm and leg and right thoracic paraspinals in 2015.
Has had work-up including HSP and ALS panel testing, however agree that with the above constellation of symptoms, atypical for ALS and need to consider other diagnoses.
Plan:
-- will review her case further and decide on next step, most likely will include repeat EMG study. Looking forward to what they may find - but has anyone EVER had this happen and what did it end up being? (I still have tremors and fasiculations - don't know if that is important or not). Could it be something totally different (if so - any suggestions? I get EXHAUSTED even after showering (once a week - gross!), or a slow progression?
I am open to hearing anything - thanks my friends!
~Christine
EMG showed denervation in left leg, right arm and leg and right thoracic paraspinals in 2015.
Has had work-up including HSP and ALS panel testing, however agree that with the above constellation of symptoms, atypical for ALS and need to consider other diagnoses.
Plan:
-- will review her case further and decide on next step, most likely will include repeat EMG study. Looking forward to what they may find - but has anyone EVER had this happen and what did it end up being? (I still have tremors and fasiculations - don't know if that is important or not). Could it be something totally different (if so - any suggestions? I get EXHAUSTED even after showering (once a week - gross!), or a slow progression?
I am open to hearing anything - thanks my friends!
~Christine