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Todays Vanderbilt MS clinic appointment
Had my latest appt with Dr. P at the MS clinic today and am feeling pretty good about how things went. But as usual there were questions I didn't thing to ask him about.
Last week I had a MRI w/wo contrast, MRA, and VEP tests done. Of course it took forever to get them lined up due to the VA. The MRI & MRA were done at the VA while the VEP was done at Vanderbilt.
After the usual banter about how I have been doing were I told him about the severe right ankle sprain 3 weeks earlier that required Morphine for the pain and 1 week on crutches he started looking through the images from the MRI. After a little while he asked me if the MRI was done on a open or closed MRI machine. Gives you some idea of the quality of the MRI done at the VA. It was done on 1.5T closed MRI.
He then pointed out 12 lesions in the MRI for me stating that they were not classic MS, but also not non-significant either and could be MS,. He then added that my LP wasn't indicative of MS, but that didn't mean I didn't have MS. This was a major leap for him as previously he had been saying that my problems were all from a narrowing of my spinal cord near the base of my brain. He did the second look at my brain because some of my newest symptoms could only be caused by lesions in my brain.
The MRA show no problems with vascular elements in my brain. The one thing I didn't understand in that report was "Right P-comm is dominant". PS I am right handed.
The VEP results were kind of interesting.
P100 was well defined with left eye stimulation, not satisfactorily reproducible for the right eye. The left latency was normal; the right latency was not reliable.
What makes this interesting is toward the end of the testing of my right eye the vision in my right eye went blank. It probably wasn't for very long, but seemed like forever. I did inform Dr. P about this during the appointment.
Dr. P has started me on a new medication "CELLCEPT" Mycophenolate. He must have warned me 1/2 dozen times that while on this to keep away from people that are sick. Must be a very strong immunosuppressant.
Dennis
Last week I had a MRI w/wo contrast, MRA, and VEP tests done. Of course it took forever to get them lined up due to the VA. The MRI & MRA were done at the VA while the VEP was done at Vanderbilt.
After the usual banter about how I have been doing were I told him about the severe right ankle sprain 3 weeks earlier that required Morphine for the pain and 1 week on crutches he started looking through the images from the MRI. After a little while he asked me if the MRI was done on a open or closed MRI machine. Gives you some idea of the quality of the MRI done at the VA. It was done on 1.5T closed MRI.
He then pointed out 12 lesions in the MRI for me stating that they were not classic MS, but also not non-significant either and could be MS,. He then added that my LP wasn't indicative of MS, but that didn't mean I didn't have MS. This was a major leap for him as previously he had been saying that my problems were all from a narrowing of my spinal cord near the base of my brain. He did the second look at my brain because some of my newest symptoms could only be caused by lesions in my brain.
The MRA show no problems with vascular elements in my brain. The one thing I didn't understand in that report was "Right P-comm is dominant". PS I am right handed.
The VEP results were kind of interesting.
P100 was well defined with left eye stimulation, not satisfactorily reproducible for the right eye. The left latency was normal; the right latency was not reliable.
What makes this interesting is toward the end of the testing of my right eye the vision in my right eye went blank. It probably wasn't for very long, but seemed like forever. I did inform Dr. P about this during the appointment.
Dr. P has started me on a new medication "CELLCEPT" Mycophenolate. He must have warned me 1/2 dozen times that while on this to keep away from people that are sick. Must be a very strong immunosuppressant.
Dennis
We skipped spring here. It has been in the mid to high 80's but the current forecast has temps moving back into spring weather area. I hadn't seen any deer around here in a long time until yesterday. And even then it was only 1 deer on my way home from Nashville. Wish I had taken my camera with me because it was posing so nicely by the side of the Trace.
The VA doctors are as bad or maybe even worse than ever. It is the Vanderbilt Doctor that is listening...finally. He wanted me to get the MRA & MRI done at Vanderbilt ( 3.0T machine) but the VA would not allow that. Instead they had it done one their machine which the Neuro could not tell if it as an open bore or not due to the bad quality.
Dave is schedule to see a surgeon the end of next month. When they did the last surgery they cut open the mesh that hold his insides in place but didn't stitch it together good enough so he needs a hernia operation. Other wise he is doing pretty good.
Dennis
The VA doctors are as bad or maybe even worse than ever. It is the Vanderbilt Doctor that is listening...finally. He wanted me to get the MRA & MRI done at Vanderbilt ( 3.0T machine) but the VA would not allow that. Instead they had it done one their machine which the Neuro could not tell if it as an open bore or not due to the bad quality.
Dave is schedule to see a surgeon the end of next month. When they did the last surgery they cut open the mesh that hold his insides in place but didn't stitch it together good enough so he needs a hernia operation. Other wise he is doing pretty good.
Dennis
Hi Dennis,
Welcome back. Has spring sprung in TN yet? The deer here are very active and creating excitement in the area.
I had to reread your message - it appears you are saying that the VA doctors are listening to you ? Huh? This is very good news. The 1.5T closed MRI should give them a pretty good look at what is going on if it was done to the MS protocol.
Ufrustrated2 had his breakthrough with the VA recently, too. It's about time you men (and women) are looked after in a compassionate and thorough way.
Keep us informed as to how you are doing, ok? I've missed seeing you around here and hope you are back for a while to share this journey. And do let us know how Dave is, these days. The last I heard he was struggling with his own health issues.
hugs,
L
Welcome back. Has spring sprung in TN yet? The deer here are very active and creating excitement in the area.
I had to reread your message - it appears you are saying that the VA doctors are listening to you ? Huh? This is very good news. The 1.5T closed MRI should give them a pretty good look at what is going on if it was done to the MS protocol.
Ufrustrated2 had his breakthrough with the VA recently, too. It's about time you men (and women) are looked after in a compassionate and thorough way.
Keep us informed as to how you are doing, ok? I've missed seeing you around here and hope you are back for a while to share this journey. And do let us know how Dave is, these days. The last I heard he was struggling with his own health issues.
hugs,
L
Some doctors have used immunosuppressants to act to function like long term steroid treatment. I think this is an "off label" use for Cellcept. Online there are a couple of posts like:
http://www.inspire.com/groups/mrf-multiple-sclerosis/discussion/cellcept-4/
that mention Vanderbilt MS clinic using Cellcept.
Bob
http://www.inspire.com/groups/mrf-multiple-sclerosis/discussion/cellcept-4/
that mention Vanderbilt MS clinic using Cellcept.
Bob
A friend of mine, a two time kidney transplant patient, takes Cellcept. I don't know why it is being used for MS. I hope someone knows. I am curious.
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