Hi, I'm new to this forum. I am currently in limbo and really just need to feel like I'm not going crazy or turning into a hypochondriac.
Four months ago my primary referred me to a neurologist because of hyperreflexia in my lower extremities. I had gone in for low back pain that was accompanied by some extremely painful muscle spasms, which I am still experiencing and is actually getting worse, with my legs now being affected. Most nights I have a hard time getting to sleep due to the pain in my legs. Climbing stairs is difficult and sometimes walking can be extremely painful. I had MRI of my lumbar spine which showed nothing outside of some mild arthritis.
Since the first visit my neurologist has been unconvinced that the hyperreflexia is anything to be concerned about. Initially she ordered a cervical spine MRI, which was normal. Then she ordered a bunch of lab tests that all came up normal as well. When I followed up with her and my hyperreflexia was even worse (I actually kicked her-not on purpose, of course lol), she ordered a thoracic spine mri and a brain mri, along with more lab work.
A few days after the brain MRI she called me and told me that my brain MRI showed signs of MS, and she wanted me to have a spinal tap. I was a nervous wreck for days. Then I had the spinal tap done, and when I saw her for a follow up appointment after the spinal tap she said "Good news, your spinal tap was normal, so you don't have MS." When I asked her what all the lesions were she said she didn't know; and based on off the fact that the spinal tap was normal, she was less inclined to think that my brain lesions were due to MS.
When I questioned whether or not I had nerve damage she said yes, she did think I have nerve damage, she just doesn't know why. She said that the hyperreflexia was likely because of meds I was given (stimulants, for fatigue), and then when I said I hadn't been on those meds since first being diagnosed with the hyperreflexia (because I had read that stimulants can cause hyperreflexia and wanted to rule that out), she said well, then she didn't know, and that it maybe the hyperreflexia has no cause. She then told me that she would order a MRA and more lab work "just to make sure," and added that I should start taking a baby aspirin daily, to prevent a heart attack or stroke (??)
After obtaining copies of my medical records including the MRI report, I come to find out that there were 20-25 "round foci of T2 signal hyperintensity"in my brain, and the impression is as follows: Broad differential diagnosis includes demylenation, gliosis from other prior ischemic/inflammatory condition, Lyme disease, and less common entities. Every lab test I've had to rule out all the other potential causes of the lesions and hyperreflexia has been normal. I haven't had the MRA done yet. I have no idea why she would tell me to take a baby aspirin daily, when my blood pressure and cholesterol have always been normal and I am otherwise healthy.
A few things bother me about all of this. First of all, she told me I had MS, then said I didn't have MS after the spinal tap was clear. Secondly, even though I told her I have been having a burning sensation in my feet mainly and in various parts of my body, she didn't document this in my chart. She noted that I have some "vague" leg pain. She made no mention of my other symptoms including my extreme fatigue and my bladder problems. I am hypothyroid but my thyroid levels are normal and this fatigue feels way worse than any fatigue I have ever had. She doesn't seem concerned about the hyperreflexia or the multiple lesions on my brain. She simply made the diagnosis of hyperreflexia and brain lesions of unknown origin.
Am I wrong for not trusting this doctor's judgement? I feel like this doctor isn't taking me seriously. She said to me, "You don't really want to have a serious debilitating disease, do you?" No, of course not. But if I do, I want to make sure that I am getting the proper treatment.
I am getting a second opinion in a few weeks with a different neurologist who will hopefully not just treat me as the basket case this one makes me feel like I am.
Anyways, thanks for reading. I'd appreciate any feedback/thoughts if anyone has anything to offer.
Four months ago my primary referred me to a neurologist because of hyperreflexia in my lower extremities. I had gone in for low back pain that was accompanied by some extremely painful muscle spasms, which I am still experiencing and is actually getting worse, with my legs now being affected. Most nights I have a hard time getting to sleep due to the pain in my legs. Climbing stairs is difficult and sometimes walking can be extremely painful. I had MRI of my lumbar spine which showed nothing outside of some mild arthritis.
Since the first visit my neurologist has been unconvinced that the hyperreflexia is anything to be concerned about. Initially she ordered a cervical spine MRI, which was normal. Then she ordered a bunch of lab tests that all came up normal as well. When I followed up with her and my hyperreflexia was even worse (I actually kicked her-not on purpose, of course lol), she ordered a thoracic spine mri and a brain mri, along with more lab work.
A few days after the brain MRI she called me and told me that my brain MRI showed signs of MS, and she wanted me to have a spinal tap. I was a nervous wreck for days. Then I had the spinal tap done, and when I saw her for a follow up appointment after the spinal tap she said "Good news, your spinal tap was normal, so you don't have MS." When I asked her what all the lesions were she said she didn't know; and based on off the fact that the spinal tap was normal, she was less inclined to think that my brain lesions were due to MS.
When I questioned whether or not I had nerve damage she said yes, she did think I have nerve damage, she just doesn't know why. She said that the hyperreflexia was likely because of meds I was given (stimulants, for fatigue), and then when I said I hadn't been on those meds since first being diagnosed with the hyperreflexia (because I had read that stimulants can cause hyperreflexia and wanted to rule that out), she said well, then she didn't know, and that it maybe the hyperreflexia has no cause. She then told me that she would order a MRA and more lab work "just to make sure," and added that I should start taking a baby aspirin daily, to prevent a heart attack or stroke (??)
After obtaining copies of my medical records including the MRI report, I come to find out that there were 20-25 "round foci of T2 signal hyperintensity"in my brain, and the impression is as follows: Broad differential diagnosis includes demylenation, gliosis from other prior ischemic/inflammatory condition, Lyme disease, and less common entities. Every lab test I've had to rule out all the other potential causes of the lesions and hyperreflexia has been normal. I haven't had the MRA done yet. I have no idea why she would tell me to take a baby aspirin daily, when my blood pressure and cholesterol have always been normal and I am otherwise healthy.
A few things bother me about all of this. First of all, she told me I had MS, then said I didn't have MS after the spinal tap was clear. Secondly, even though I told her I have been having a burning sensation in my feet mainly and in various parts of my body, she didn't document this in my chart. She noted that I have some "vague" leg pain. She made no mention of my other symptoms including my extreme fatigue and my bladder problems. I am hypothyroid but my thyroid levels are normal and this fatigue feels way worse than any fatigue I have ever had. She doesn't seem concerned about the hyperreflexia or the multiple lesions on my brain. She simply made the diagnosis of hyperreflexia and brain lesions of unknown origin.
Am I wrong for not trusting this doctor's judgement? I feel like this doctor isn't taking me seriously. She said to me, "You don't really want to have a serious debilitating disease, do you?" No, of course not. But if I do, I want to make sure that I am getting the proper treatment.
I am getting a second opinion in a few weeks with a different neurologist who will hopefully not just treat me as the basket case this one makes me feel like I am.
Anyways, thanks for reading. I'd appreciate any feedback/thoughts if anyone has anything to offer.
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