Kfitz
Member
- Joined
- Mar 2, 2023
- Messages
- 17
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- NY
Both of my threads have been locked (found here and here), so here’s my third. I finally saw Columbia, since they never called for a cancellation and every time I called there was none. Out of all the doctors I’ve seen they’ve been the most disorganized and disappointing.
Initially, when I made the appointment, I requested the doctor I wanted to see, and at that point I was told it is a clinic and that’s now how it works. The doctor I chose I had researched and saw that he had tons of experience with neuromuscular conditions and other various illnesses as well. I understand my presentation would be unusual or atypical as the last neuromuscular specialist I saw stated. I’m 1 year in and most of my symptoms are that of upper motor nueron dysfunction, but I do have visible muscle twitching in my chin and legs. My clinical in December stated that my clinical exam shows corticobulbar and corticospinal dysfunction with hyperreflexia and hypertonia.
The Friday before my clinic appointment I called for details on what tests I’d be having and how long I should expect to be there.. all to be met with disappointing news. I was getting no testing and I was seeing Dr. Francesco Michelassi, not even listed as a neuromuscular Dr… googling him yields almost nothing. I lost it. I waited 6 months and could’ve been to Mayo Clinic and back for a “consultation appointment”. The doctors appointment was the 11th. 2 medical students along with another person, not a doctor, performed the initial exam. It was a joke… one medical student did the pinprick sensation test without asking me to close my eyes while asking if he was poking my right or left arm. He was scolded by another student.
Finally the doctor came in with his crumpled scrubs with holes in them and said he trusts so and so’s exam and will be brief… upon running through my symptoms he did do the least the thorough exam I’ve received by any doctor I’ve seen. He did my reflexes and the students and one of them gasped when he struck one muscle in my arm. Apparently I now have reflex spreading. When my arm is struck it radiates down to my hand where my hand makes a grabbing gesture. Now when he struck my chin they gasped again.. my husband was infuriated, as was I. It was so unprofessional.
He ordered a full body EMG which I had Monday, with no results because tech does the EMG. The EMG was supposed to be full body with specific focus on the jaw and bulbar muscles. When the tech came in he said they were testing just one side limbs.. I explained the situation and he left the room to speak with the attending. Long story short.. they did one side, my tongue, my back, and my massetter (which he told me he’s never done before), assuring.
I’m waiting for the report and I have my follow up April 1st because Dr. Michelassi wanted to see me in 1 month vs the typical 3 months that they usually do follow ups. I am horrified by Columbia at this point. He did mention a possible dystonia of the jaw, but I’d have to see movement, which I've seen already, and that wouldn’t explain the muscle twitching in my limbs. Why is this so frustrating?
At my follow up, I am going to request an nfl blood test. Any other suggestions? I do understand something else could be going on entirely as this is extremely slow moving, but has progressed significantly. I now get muscle squeezing sensations in my throat and cramping of my upper palate along with twitching there as well.
Initially, when I made the appointment, I requested the doctor I wanted to see, and at that point I was told it is a clinic and that’s now how it works. The doctor I chose I had researched and saw that he had tons of experience with neuromuscular conditions and other various illnesses as well. I understand my presentation would be unusual or atypical as the last neuromuscular specialist I saw stated. I’m 1 year in and most of my symptoms are that of upper motor nueron dysfunction, but I do have visible muscle twitching in my chin and legs. My clinical in December stated that my clinical exam shows corticobulbar and corticospinal dysfunction with hyperreflexia and hypertonia.
The Friday before my clinic appointment I called for details on what tests I’d be having and how long I should expect to be there.. all to be met with disappointing news. I was getting no testing and I was seeing Dr. Francesco Michelassi, not even listed as a neuromuscular Dr… googling him yields almost nothing. I lost it. I waited 6 months and could’ve been to Mayo Clinic and back for a “consultation appointment”. The doctors appointment was the 11th. 2 medical students along with another person, not a doctor, performed the initial exam. It was a joke… one medical student did the pinprick sensation test without asking me to close my eyes while asking if he was poking my right or left arm. He was scolded by another student.
Finally the doctor came in with his crumpled scrubs with holes in them and said he trusts so and so’s exam and will be brief… upon running through my symptoms he did do the least the thorough exam I’ve received by any doctor I’ve seen. He did my reflexes and the students and one of them gasped when he struck one muscle in my arm. Apparently I now have reflex spreading. When my arm is struck it radiates down to my hand where my hand makes a grabbing gesture. Now when he struck my chin they gasped again.. my husband was infuriated, as was I. It was so unprofessional.
He ordered a full body EMG which I had Monday, with no results because tech does the EMG. The EMG was supposed to be full body with specific focus on the jaw and bulbar muscles. When the tech came in he said they were testing just one side limbs.. I explained the situation and he left the room to speak with the attending. Long story short.. they did one side, my tongue, my back, and my massetter (which he told me he’s never done before), assuring.
I’m waiting for the report and I have my follow up April 1st because Dr. Michelassi wanted to see me in 1 month vs the typical 3 months that they usually do follow ups. I am horrified by Columbia at this point. He did mention a possible dystonia of the jaw, but I’d have to see movement, which I've seen already, and that wouldn’t explain the muscle twitching in my limbs. Why is this so frustrating?
At my follow up, I am going to request an nfl blood test. Any other suggestions? I do understand something else could be going on entirely as this is extremely slow moving, but has progressed significantly. I now get muscle squeezing sensations in my throat and cramping of my upper palate along with twitching there as well.
Last edited by a moderator:
