Waiting for the other shoe to drop.
Greetings All~
I have lurked here off and on since last year.
Finally, It was this week that I register
It has been one *** of a journey.
I could write a novella but I really want to get out of the house today.
It started insidiously enough, vertigo that would come and go to the point I would see an ENT and get my ears cleaned out...
Fast forward a few years and I find myself stumbling, tripping over the slightest things. Chalked it up to being clumsy. Vertigo would come back now and then. (I get my care through the VA) Dr. and I figured it was menopause and arthritis, since I would also have back pain. X-rays were done. Arthritis treated with anti-inflammatory. Life continues.
Fast forward a couple years more, go to work, find myself having not only back pain, but numbness in the front middle of my thighs, along with numb feet. Go to ER, get worked up and sent to Neurologist.
Neurologist did standard neuro exam, order labs.
Then Neurologist not only disappears, but did not forward any of the abnormal lab results to my primary care physician...(critical high ANA among others). They were not discovered until last year when this time not only did my back hurt, but my left leg was not functioning...at all. Calls Doc, got nurse who said I need to be seen by neuro. Told her I saw neuro 2 years prior and nothing was done. Told her to have doc call me back. She does 2 hours later.
Primary care doc was livid. She hates surprises. And not being told something is wrong, no matter how little. Found the notes and labs results that were not forwarded to her.
Tells me that we will get to the bottom of this.
Primary care doc orders every lab under the sun, EMG/NCS
Brain & C-spine MRI, given new consult for a new neuro.
Fired new neuro. He asked if I had been sexually assaulted, how much pain med I was on, if I was crazy. I lost it in his office. He did not read the previous notes and to top it off, told me that I did not need the MRI that was ordered, there was nothing wrong with my head. He tried to cancel the MRI my Primary care doc ordered and orders his own for the lumbar/thorasic spine.
I called my Primary care doc, told her I would never step foot in that neuro department again. Told her that I would crawl to another neuro in Ann Arbor before I would take another appointment in that department in that facility. She tells me to get the MRI that she ordered done.
MRI comes back with 1 lesion and severe spinal cord compression on 2 levels.
Got the appointment in Ann Arbor. They are good. They listened and did not think I was crazy. They order MRIs with contrast of Brain and complete spine. MRIs come back with 4 lesions in brain, 3 in spinal cord with severe stenosis. Told probable MS and referred to MS clinic.
MS doc has been fabulous. More tests (which came back normal) so right now do not fit the criteria for Dissemination in space. (not enough lesions according to McDonald criteria) Got the spinal stenosis taken care of with Neurosurgery....after much harranging with the Neurosugery department got it done by another neurosurgeon.
Last week was started on Baclofen, given PT, OT and in a few months will get a neurostimulator for my left leg (which has severe foot drop). Follow-up in 6 months for another MRI and to see how I am doing.
So...just hangng out here waiting for more to appear. When they do I will be diagnosed with one of the progressive types (Primary or Progressive-remitting).
It's been a long road.
I have lurked here off and on since last year.
Finally, It was this week that I register
It has been one *** of a journey.
I could write a novella but I really want to get out of the house today.
It started insidiously enough, vertigo that would come and go to the point I would see an ENT and get my ears cleaned out...
Fast forward a few years and I find myself stumbling, tripping over the slightest things. Chalked it up to being clumsy. Vertigo would come back now and then. (I get my care through the VA) Dr. and I figured it was menopause and arthritis, since I would also have back pain. X-rays were done. Arthritis treated with anti-inflammatory. Life continues.
Fast forward a couple years more, go to work, find myself having not only back pain, but numbness in the front middle of my thighs, along with numb feet. Go to ER, get worked up and sent to Neurologist.
Neurologist did standard neuro exam, order labs.
Then Neurologist not only disappears, but did not forward any of the abnormal lab results to my primary care physician...(critical high ANA among others). They were not discovered until last year when this time not only did my back hurt, but my left leg was not functioning...at all. Calls Doc, got nurse who said I need to be seen by neuro. Told her I saw neuro 2 years prior and nothing was done. Told her to have doc call me back. She does 2 hours later.
Primary care doc was livid. She hates surprises. And not being told something is wrong, no matter how little. Found the notes and labs results that were not forwarded to her.
Tells me that we will get to the bottom of this.
Primary care doc orders every lab under the sun, EMG/NCS
Brain & C-spine MRI, given new consult for a new neuro.
Fired new neuro. He asked if I had been sexually assaulted, how much pain med I was on, if I was crazy. I lost it in his office. He did not read the previous notes and to top it off, told me that I did not need the MRI that was ordered, there was nothing wrong with my head. He tried to cancel the MRI my Primary care doc ordered and orders his own for the lumbar/thorasic spine.
I called my Primary care doc, told her I would never step foot in that neuro department again. Told her that I would crawl to another neuro in Ann Arbor before I would take another appointment in that department in that facility. She tells me to get the MRI that she ordered done.
MRI comes back with 1 lesion and severe spinal cord compression on 2 levels.
Got the appointment in Ann Arbor. They are good. They listened and did not think I was crazy. They order MRIs with contrast of Brain and complete spine. MRIs come back with 4 lesions in brain, 3 in spinal cord with severe stenosis. Told probable MS and referred to MS clinic.
MS doc has been fabulous. More tests (which came back normal) so right now do not fit the criteria for Dissemination in space. (not enough lesions according to McDonald criteria) Got the spinal stenosis taken care of with Neurosurgery....after much harranging with the Neurosugery department got it done by another neurosurgeon.
Last week was started on Baclofen, given PT, OT and in a few months will get a neurostimulator for my left leg (which has severe foot drop). Follow-up in 6 months for another MRI and to see how I am doing.
So...just hangng out here waiting for more to appear. When they do I will be diagnosed with one of the progressive types (Primary or Progressive-remitting).
It's been a long road.
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