hischik
08-27-2008, 01:58 AM
Hi all,
Today, I traveled to UCSF for my apt w/ a MS specialist. In May, I had evoked potentials done and my fourth MRI in July. My evoked potentials VEP and BAER were normal. The SSEP for the upper limbs were abnormal bilaterally. The lower limbs were not able to be read (probably due to it being to painful for me and I couldn't relax).
Ok...good news..my MRI is great! I previously had two lesions. They are apparently gone. GONE. He says they are not there at all. When asked what caused them and why they are now gone, he bluntly said, "don't know."
So, basically I was told that there is something abnormal in my spinal pathway but he didn't know what was causing it. His suggestion was to "go home and forget about all of this and in a year we will repeat the brain MRI." When my husband questioned him about doing a spinal MRI he said I had a cervical MRI done in March of 07 which showed nothing (a 1.5 machine) and there wasn't enough symptoms to warrant a spine MRI at this time. So, I have an abnormal SSEP and daily tingling in my hands and feet and I am supposed to just forget about it.
At the earlier part of the appointment he had begun to ask me about any new symptoms and I had pulled out a list of things I wanted to talk to him about. I got to tell him ONE thing when a tech came in to set up something on the computer for him so that he could look up my MRI films (they weren't done at that hospital). Once he left, he gave me his spill about "forgetting it". At that point I was really done. I had almost called yesterday to cancel the appointment b/c I was already feeling down. I KNEW this was going to be another one of those appointments in which I walked out with no answers. He is a neurologist and I have an abnormal neuro symptom that he can't explain. Hmmm.... I'm baffled and confused. I don't know what to do. I'm absolutely losing my mind.
Suggestions or comments??
Julie
Today, I traveled to UCSF for my apt w/ a MS specialist. In May, I had evoked potentials done and my fourth MRI in July. My evoked potentials VEP and BAER were normal. The SSEP for the upper limbs were abnormal bilaterally. The lower limbs were not able to be read (probably due to it being to painful for me and I couldn't relax).
Ok...good news..my MRI is great! I previously had two lesions. They are apparently gone. GONE. He says they are not there at all. When asked what caused them and why they are now gone, he bluntly said, "don't know."
So, basically I was told that there is something abnormal in my spinal pathway but he didn't know what was causing it. His suggestion was to "go home and forget about all of this and in a year we will repeat the brain MRI." When my husband questioned him about doing a spinal MRI he said I had a cervical MRI done in March of 07 which showed nothing (a 1.5 machine) and there wasn't enough symptoms to warrant a spine MRI at this time. So, I have an abnormal SSEP and daily tingling in my hands and feet and I am supposed to just forget about it.
At the earlier part of the appointment he had begun to ask me about any new symptoms and I had pulled out a list of things I wanted to talk to him about. I got to tell him ONE thing when a tech came in to set up something on the computer for him so that he could look up my MRI films (they weren't done at that hospital). Once he left, he gave me his spill about "forgetting it". At that point I was really done. I had almost called yesterday to cancel the appointment b/c I was already feeling down. I KNEW this was going to be another one of those appointments in which I walked out with no answers. He is a neurologist and I have an abnormal neuro symptom that he can't explain. Hmmm.... I'm baffled and confused. I don't know what to do. I'm absolutely losing my mind.
Suggestions or comments??
Julie
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Jean090680
08-27-2008, 05:47 AM
I can undestand how frustrated you must be. I have had similar experiences. My advice is to see another Neurologist, very soon. No one doctor knows everything. A second look with a fresh set of eyes can be very enlightening. Good Luck and I hope you find a doctor who will listen to you and consider retesting. One Year is a long time to wait when you are having neurological difficulties, you don't know why, and you are scared .
I was advised (by my PC Doc) to start over by seeing a "General Neurologist" at one of the Boston Hospitals and from there I was referred me to a specialized Neurologist. It took seeing 4 "Specialized Neurologist" before all of the pieces of the puzzle started to come together, but it seems to be that way for many people.
Good Luck. Please get a second opinion. One Year is a long time to not feel well.
I was advised (by my PC Doc) to start over by seeing a "General Neurologist" at one of the Boston Hospitals and from there I was referred me to a specialized Neurologist. It took seeing 4 "Specialized Neurologist" before all of the pieces of the puzzle started to come together, but it seems to be that way for many people.
Good Luck. Please get a second opinion. One Year is a long time to not feel well.
Tasia W
08-27-2008, 12:26 PM
Hi Julie
Sorry for your disapointment. This is definately something that you cannot just forget about. What about a referral to a different neurologist for a second opinion? Its your body and health that are in question and it might just take finding the right neuro to help find some answeres to your questions.
Take care Julie and do keep us posted
Tasia
Sorry for your disapointment. This is definately something that you cannot just forget about. What about a referral to a different neurologist for a second opinion? Its your body and health that are in question and it might just take finding the right neuro to help find some answeres to your questions.
Take care Julie and do keep us posted
Tasia