Janine
Member
- Joined
- May 2, 2017
- Messages
- 25
- Reason
- Other
- Country
- Uni
- State
- Massachusetts
- City
- North Reading
As promised I have returned to update folks especially those without a diagnosis seeking answers. I know for myself when I first came here with twitching I would follow the posts of worried twitchers and eventually they would disappear without ever knowing how they had fared.
I will not insult these suffering from ALS by comparing my suffering to theirs though knowing things just weren't right with me and twitching all over as well as experiencing weakness primarily in my pelvis and low back, but also my left arm had left me quite anxious. There were those who told me to relax and not be in such a hurry to be diagnosed. Still I persisted in pestering my primary to refer me to neurologist. That was a months wait. Neiro ordered EMG two limb. The was normal. I insisted on full spine MRI and she consented, but thought I was just anxious and suffering from BFS. Meanwhile my neuro exam was essentially normal with no "clinical "weakness or pathologic reflexes. There was a wait for my MRI which was done with and without contrast. Two days later the neurologist called me and advised me to see neurosurgeon as my MRI indicated I have a cervical disc that is compressing my spinal cord and causing it to swell and/or bleed. I will see the neurosurgeon next week. I will likely need surgery to relieve the pressure off my spine. I am told the purpose of the surgery is to prevent progression of injury, and i may or may not have recovery of already established symptoms. The fact that I pursued this so vigorously allowed me to be diagnosed within a 3 month span and i may be hopeful for some recovery.
I cannot tell you the extent of the fasiculations I experienced. I would say thousands a day. They were continous especially in my abdomen, but also face, tongue and all four limbs. I also had buzzing and vibration over my low back and tremors of my trunk which could be felt by others. I had thumbs and toes that jumped and even whole limbs that jumped at night.
Mine is a serious condition and may be progressive, but it is not as grave as so many here so bravely confront.
Unfortunately an Internet search for causes of fasiculations usually leads to ALS bringing so many to this site, but it is my belief that fasiculations are caused by many other factors which even the medical community does not quite fully understand.
Blessings to all of you PALS, CALS, "worried twitchers" and, even more so, to those who have lost loved ones yet continue to be here offering help to so many .
I will not insult these suffering from ALS by comparing my suffering to theirs though knowing things just weren't right with me and twitching all over as well as experiencing weakness primarily in my pelvis and low back, but also my left arm had left me quite anxious. There were those who told me to relax and not be in such a hurry to be diagnosed. Still I persisted in pestering my primary to refer me to neurologist. That was a months wait. Neiro ordered EMG two limb. The was normal. I insisted on full spine MRI and she consented, but thought I was just anxious and suffering from BFS. Meanwhile my neuro exam was essentially normal with no "clinical "weakness or pathologic reflexes. There was a wait for my MRI which was done with and without contrast. Two days later the neurologist called me and advised me to see neurosurgeon as my MRI indicated I have a cervical disc that is compressing my spinal cord and causing it to swell and/or bleed. I will see the neurosurgeon next week. I will likely need surgery to relieve the pressure off my spine. I am told the purpose of the surgery is to prevent progression of injury, and i may or may not have recovery of already established symptoms. The fact that I pursued this so vigorously allowed me to be diagnosed within a 3 month span and i may be hopeful for some recovery.
I cannot tell you the extent of the fasiculations I experienced. I would say thousands a day. They were continous especially in my abdomen, but also face, tongue and all four limbs. I also had buzzing and vibration over my low back and tremors of my trunk which could be felt by others. I had thumbs and toes that jumped and even whole limbs that jumped at night.
Mine is a serious condition and may be progressive, but it is not as grave as so many here so bravely confront.
Unfortunately an Internet search for causes of fasiculations usually leads to ALS bringing so many to this site, but it is my belief that fasiculations are caused by many other factors which even the medical community does not quite fully understand.
Blessings to all of you PALS, CALS, "worried twitchers" and, even more so, to those who have lost loved ones yet continue to be here offering help to so many .
