So, the fun is just beginning
By the way, a note to all you doctor and medical types -- calling a patient at home at night on the same day that they have extensive labwork done is a surefire way to start a panic attack!
I had my followup with the neurologist this morning...and evening...
So, wonder of wonders, I did manage to have my MRI yesterday and they did do a stat report that was couriered to my doctor this morning as I sat in the waiting room. The brilliant good news is that the brain MRI is completely normal. The bad news, my left optic nerve is extremely inflamed. No duh. But again, the good news -- I thought -- was there does not appear to be any lesions on the nerve. This is significant because that is a typical criteria for diagnosing Multiple Sclerosis. However, my neurologist was not entirely satisfied because he has never seen inflammation "so bad" without the MS lesions. This really bothered him. He did do some electrical tests to check the neuropathways in my legs as well. Imagine tiny jumper cables being hooked onto your second toe and then electric shocks being sent through your legs. Yeah, ow. This also involved a test with a needle connected to the computer and the speakers on. The sound of static changed as pressure was put on and taken off nerves. On the side, we discovered I have an extremely pinched nerve in my back. (I already knew that from the pain going down my leg for many months.) The sound that made over the speakers was moderately terrifying. So anyhow, he said MS enough to make me extremely nervous, but at the time, was confident that I do NOT have it and would not get it -- like 80%. So instead, he sent me over to the outpatient lab facility at the hospital to do some extensive blood work, testing for everything under the sun, in hopes of ruling it all out. No lie, they took over a pint of blood. And I didn't even get the cookies and juice! I was pretty calm, feeling like I had dodged a major bullet. No tumor, no MS. Still had to get the eye thing figured out because the pain is rather debilitating at times, but figured it was going to be a simpler process now. My official diagnosis of the day was optic neuritis.
Fast forward to 6:20pm this evening. I was in my car almost to my chorus rehearsal hall when I noticed the incoming call on my phone was from the neurologist's office. Here is where I nearly had a major coronary. You see, I had flashbacks to revelstone's diagnosis process, and was certain some blood test had already come back with whacked out results. Thankfully, that was not the case, but the call disturbed me greatly all the same. First of all, it was the doctor himself and not a nurse. He told me that my case had been bothering him all day because he had never seen an optic nerve so messed up without the presence of the telltale MS lesions before. So, he studied the MRI for quite a while and now thinks he can "hallucinate" a tiny pinpoint of white on the nerve. But, he did say that it could be just an anomaly that is unrelated or may not be anything at all. However, he feels that he can no longer say with certainty that I don't have MS. He's still not saying I do have it, either. But now, as a precautionary measure, he wants to start me on a course of steroids -- prednisone, in particular. First of all, he wants to bring down the inflammation of the optic nerve so that it does not cause permanent damage to my vision. Yeah, I'm good with that. And second, IF it is the start of MS, steroids can be used as one of the first-line courses of treatment, I guess. Of course, steroids also tend to cause weight gain and bloating...but the good news is he only wants me to be on it for a couple of months to get the nerve inflammation under control.
So, now I am a little bit scared and confused. I have done enough research on MS already to know that I have exhibited several of the more general symptoms, but then, so has most of the human population at one time or another. So that's no help. I also know that roughly 5% of people who DO have MS can have completely normal MRI's with no lesions present or apparent. I also know that there are other conditions that mimic the symptoms of MS, notably lupus (which he mentioned more than once), which is why Doc is doing all the blood work.
Multiple Sclerosis is certainly not the worst diagnosis in the world. I had had a few nightmares about not-so-benign tumors that I am glad I don't have to worry about. But still...not exactly the kind of thing you want to hear. If not for that phone call tonight, I would be in a much better frame of mind right now...
I had my followup with the neurologist this morning...and evening...
So, wonder of wonders, I did manage to have my MRI yesterday and they did do a stat report that was couriered to my doctor this morning as I sat in the waiting room. The brilliant good news is that the brain MRI is completely normal. The bad news, my left optic nerve is extremely inflamed. No duh. But again, the good news -- I thought -- was there does not appear to be any lesions on the nerve. This is significant because that is a typical criteria for diagnosing Multiple Sclerosis. However, my neurologist was not entirely satisfied because he has never seen inflammation "so bad" without the MS lesions. This really bothered him. He did do some electrical tests to check the neuropathways in my legs as well. Imagine tiny jumper cables being hooked onto your second toe and then electric shocks being sent through your legs. Yeah, ow. This also involved a test with a needle connected to the computer and the speakers on. The sound of static changed as pressure was put on and taken off nerves. On the side, we discovered I have an extremely pinched nerve in my back. (I already knew that from the pain going down my leg for many months.) The sound that made over the speakers was moderately terrifying. So anyhow, he said MS enough to make me extremely nervous, but at the time, was confident that I do NOT have it and would not get it -- like 80%. So instead, he sent me over to the outpatient lab facility at the hospital to do some extensive blood work, testing for everything under the sun, in hopes of ruling it all out. No lie, they took over a pint of blood. And I didn't even get the cookies and juice! I was pretty calm, feeling like I had dodged a major bullet. No tumor, no MS. Still had to get the eye thing figured out because the pain is rather debilitating at times, but figured it was going to be a simpler process now. My official diagnosis of the day was optic neuritis.
Fast forward to 6:20pm this evening. I was in my car almost to my chorus rehearsal hall when I noticed the incoming call on my phone was from the neurologist's office. Here is where I nearly had a major coronary. You see, I had flashbacks to revelstone's diagnosis process, and was certain some blood test had already come back with whacked out results. Thankfully, that was not the case, but the call disturbed me greatly all the same. First of all, it was the doctor himself and not a nurse. He told me that my case had been bothering him all day because he had never seen an optic nerve so messed up without the presence of the telltale MS lesions before. So, he studied the MRI for quite a while and now thinks he can "hallucinate" a tiny pinpoint of white on the nerve. But, he did say that it could be just an anomaly that is unrelated or may not be anything at all. However, he feels that he can no longer say with certainty that I don't have MS. He's still not saying I do have it, either. But now, as a precautionary measure, he wants to start me on a course of steroids -- prednisone, in particular. First of all, he wants to bring down the inflammation of the optic nerve so that it does not cause permanent damage to my vision. Yeah, I'm good with that. And second, IF it is the start of MS, steroids can be used as one of the first-line courses of treatment, I guess. Of course, steroids also tend to cause weight gain and bloating...but the good news is he only wants me to be on it for a couple of months to get the nerve inflammation under control.
So, now I am a little bit scared and confused. I have done enough research on MS already to know that I have exhibited several of the more general symptoms, but then, so has most of the human population at one time or another. So that's no help. I also know that roughly 5% of people who DO have MS can have completely normal MRI's with no lesions present or apparent. I also know that there are other conditions that mimic the symptoms of MS, notably lupus (which he mentioned more than once), which is why Doc is doing all the blood work.
Multiple Sclerosis is certainly not the worst diagnosis in the world. I had had a few nightmares about not-so-benign tumors that I am glad I don't have to worry about. But still...not exactly the kind of thing you want to hear. If not for that phone call tonight, I would be in a much better frame of mind right now...