Hello from limbo! I have started to pop into the chat the past few days and decided that I should probably post up my story of where I am at in the process (and to finally chronicle it for myself). So, here goes nothing:
My main symptom didn't start becoming noticeable to me until August of last year, while recovering from a traumatic life event. In May of 2018 I had surgery and, 5 days later, a heart attack. In August I started cardiac rehab (exercise) and that is when I started to notice the lose of strength/feeling in my left leg. Periodically I would have a feeling of intense pain at the bottom of the muscle... like someone was doing electroshock therapy on it.
Being an idiot, I just ignored it. The problem continued to get worse and the pain more frequent until finally, in February of this year, I mentioned it to my Primary Care Provider. She ordered PT and an ECV/EMG. I should note that about this time I was also prescribed zofran for periodic bouts of nausea that, at the time, I blamed on my cardiac meds.
In May of this year I was finally able to get into neurology for the testing. When she received the results of the ECV/EMG exam, which showed neurogenic changes in the muscle and hyperreflexia, she ordered an MRI of my lumbar spine. The MRI did not show any compression or irritation of the nerves, so my PCP referred me to neurology for follow-up. She also started me on Lyrica for the pain, which was continuing to progress.
So, in July I was finally able to see my first neurologist, where more MRIs were ordered and reflex testing was done. This time I had an MRI of my pelvis, lumbar spine, and whole spine done. She also increased my dosage of Lyrica. Following the MRI there was a lot of back and forth via e-chart messaging with my neurologist. She ordered lab tests to rule out everything detectable via that type of testing. When nothing showed up in the labs, she ordered another MRI of my spine. At some point during the back and forth I noticed in her notes from the initial visit that I had a positive Hoffman sign response. When I asked her about that and if there was a possibility that this could be MS, she said that it was nothing to worry about.
I saw her next at the end of August. The MRI of my whole spine showed a minor bulged disk at C5-C6 so she referred me to a neurosurgeon for evaluation and to rule out compression on the column for my symptoms. She also referred me to another neurologist at a large neurology center to see if they could figure it out.
In September I met with the neurosurgeon. They did an x-ray of my cervical spine and the surgeon determined that there was no compression of the column or of my radial nerves, so surgery was not necessary.
In early October my wife noticed one of my newest symptoms that I was trying to ignore. I started to drop things at random from both hands. I brought this up with my neurologist on my next appointment. About this time my gait had become so unstable that my wife brought up the use of a cane, which the neurologist agreed with and referred me to PT/OT for both the use of a cane and for a baseline grip-strength evaluation.
The evaluation showed that my grip strength and coordination was 1/2 of what it should have been and I was given lots of exercises to work to improve them.
At the end of October (last week) I met with a new neurologist at the large center. I found out, in meeting with him, that his specialty was neuromuscular presentations in MS. Coming into the appointment he had already looked over all of me prior imaging and testing. He did a very comprehensive reflex evaluation and talked at length with myself and my wife about what he had already ruled out and possible causes of my symptoms. We discussed that I was having periodic bouts of nausea, very slight losses of memory and speech, and the fact that I have had two falls and about six "good catches" where I trip but don't fall. He immediately commented that those numbers were way too high for his liking. He then ordered an MRI of my brain and a re-check of my B-12/flexon levels. He also explained that, while he would save it for last, a lumbar puncture was in my future.
So I had my blood drawn Friday and I am waiting for authorization to come through my insurance to schedule the brain MRI. I keep going through thoughts of being a hypochondriac, being convinced that I just have a B-12 deficiency, and of course thoughts that I have MS.
I think the worst part of Limbo Land is the fact that my entire life's plan is put on hold until I know just what is really going on and what to expect.
My main symptom didn't start becoming noticeable to me until August of last year, while recovering from a traumatic life event. In May of 2018 I had surgery and, 5 days later, a heart attack. In August I started cardiac rehab (exercise) and that is when I started to notice the lose of strength/feeling in my left leg. Periodically I would have a feeling of intense pain at the bottom of the muscle... like someone was doing electroshock therapy on it.
Being an idiot, I just ignored it. The problem continued to get worse and the pain more frequent until finally, in February of this year, I mentioned it to my Primary Care Provider. She ordered PT and an ECV/EMG. I should note that about this time I was also prescribed zofran for periodic bouts of nausea that, at the time, I blamed on my cardiac meds.
In May of this year I was finally able to get into neurology for the testing. When she received the results of the ECV/EMG exam, which showed neurogenic changes in the muscle and hyperreflexia, she ordered an MRI of my lumbar spine. The MRI did not show any compression or irritation of the nerves, so my PCP referred me to neurology for follow-up. She also started me on Lyrica for the pain, which was continuing to progress.
So, in July I was finally able to see my first neurologist, where more MRIs were ordered and reflex testing was done. This time I had an MRI of my pelvis, lumbar spine, and whole spine done. She also increased my dosage of Lyrica. Following the MRI there was a lot of back and forth via e-chart messaging with my neurologist. She ordered lab tests to rule out everything detectable via that type of testing. When nothing showed up in the labs, she ordered another MRI of my spine. At some point during the back and forth I noticed in her notes from the initial visit that I had a positive Hoffman sign response. When I asked her about that and if there was a possibility that this could be MS, she said that it was nothing to worry about.
I saw her next at the end of August. The MRI of my whole spine showed a minor bulged disk at C5-C6 so she referred me to a neurosurgeon for evaluation and to rule out compression on the column for my symptoms. She also referred me to another neurologist at a large neurology center to see if they could figure it out.
In September I met with the neurosurgeon. They did an x-ray of my cervical spine and the surgeon determined that there was no compression of the column or of my radial nerves, so surgery was not necessary.
In early October my wife noticed one of my newest symptoms that I was trying to ignore. I started to drop things at random from both hands. I brought this up with my neurologist on my next appointment. About this time my gait had become so unstable that my wife brought up the use of a cane, which the neurologist agreed with and referred me to PT/OT for both the use of a cane and for a baseline grip-strength evaluation.
The evaluation showed that my grip strength and coordination was 1/2 of what it should have been and I was given lots of exercises to work to improve them.
At the end of October (last week) I met with a new neurologist at the large center. I found out, in meeting with him, that his specialty was neuromuscular presentations in MS. Coming into the appointment he had already looked over all of me prior imaging and testing. He did a very comprehensive reflex evaluation and talked at length with myself and my wife about what he had already ruled out and possible causes of my symptoms. We discussed that I was having periodic bouts of nausea, very slight losses of memory and speech, and the fact that I have had two falls and about six "good catches" where I trip but don't fall. He immediately commented that those numbers were way too high for his liking. He then ordered an MRI of my brain and a re-check of my B-12/flexon levels. He also explained that, while he would save it for last, a lumbar puncture was in my future.
So I had my blood drawn Friday and I am waiting for authorization to come through my insurance to schedule the brain MRI. I keep going through thoughts of being a hypochondriac, being convinced that I just have a B-12 deficiency, and of course thoughts that I have MS.
I think the worst part of Limbo Land is the fact that my entire life's plan is put on hold until I know just what is really going on and what to expect.
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