I need to vent, and to ask for feedback.
The story starts in 1998 when I started having pins and needles and numbness. No dx from family doctor, no mention could be MS. Then in 2001 symptoms worsened and I saw a specialist in MS. After an MRI, he said there were lesions but not enough to diagnose me with MS. He told me he expected I would have a diagnosis of it within 3-5 years. Jump to 2004. New symptoms arose and I saw a different MS specialist, (an expert nationally in the field of MS, that's important later), and he diagnosed me with MS.
While in his care I had 3 relapses in the span of 6 years. He told me my MS was mild and mostly sensory. My symptoms support that to this day. I have a few more balance issues than I did then and some more weakness, but I'm also older now, not the spring chicken I was then. I was on Avonex, after 2 years so he took me off because of worsening depression and a relapse. Tried Copaxone, allergic reaction. I decided then no more DMD's. He understood I knew the issues without them and respected my decision. So we did Solu-Medrol every 3 months.
This MS doc is in a nearby city and I am mostly on my own. Because of the drive, especially doing Solu-Medrol and if I needed more serious hospitalization, I wanted a doc more local.
In 2011, I saw a local neuro. First visit, great. Second visit in 2012, almost came to blows over my decision to stay off DMD's. My MRI's didn't change significantly from 2004 through 2012. I still knew the ramifications. I give a great deal of consideration to the doctor's recommendations. But, at the end of the day, this is my decision. I am pro-active with all of my healthcare. He didn't take my position to well, sort of the "do it because I say so" mentality. Not good with me. So, I didn't see a neurologist from 2012 until this year.
I went to the only other local neurologist in January and today. First visit, fine, going over the history, ordering tests, etc. I told him my position on DMD's at the first visit. Today's visit was a disaster. He tells me he doesn't think I have MS! HUH? That the lesions don't seem to him to follow the pattern of MS and that I should have a spinal tap so I can know for sure and get a second opinion from another MS specialist. Who?
Well, the same one I went to in 2001. That way I will know I have it and I can start medication. I pointed out to him it wouldn't matter, I still wouldn't take the medication. So, our conversation went like this. He said "oh, well there is no reason to then, but I still think it could be something besides MS". Like what? Small fiber neuropathy, because I have pins and needles. Does this cause lesions in the brain? No. What test is there for that? Skin biopsy. Well, what would cause the lesions then. Smoking and migraines. But, I didn't have migraines in 2004 and gee, I don't have migraines now. He asked if I get headaches. Yes. No nausea, no vomiting, no auras, and aspirin takes them away, I just get them for a few days every 3-6 months. And he latched onto that as migraine? Then I've found the cure for migraines folks, aspirin.
At that point, I told this doc that I would not go down a path I went down from 1998 to 2004 to confirm a diagnosis I already had or to look for something else he can't logically explain I have. He explained just because a nationally known expert in the field of MS said I had MS doesn't mean I do, people make mistakes. And the other doctors I saw, including one for my disability, just said I did because the expert said I did.
At that point, I became so dizzy, just got off a roller coaster dizzy, and I had told him this symptom both visits. Stress causes it to rear it's ugly head. He glossed over that. He also glossed over my needing to hold onto the wall when I tried to walk toe to toe. And the other myriad of MS symptoms I had. Just focused on the ones that fit his theory. Both visits he asked me over and over about the pinchy/bites I get in my legs and the foot burning. That's all he asked about. Not numbness, weakness, dizziness.
I left it with him that I would have to consider if this would be a good doctor/patient relationship if he is left with treating me for something he doesn't believe I have. He said it may be benign MS and that he would leave MS on my chart since he couldn't say I don't have it either. Gee, after 45 minutes of explaining how you don't think this is MS that's mighty big of you.
When I went to the MS expert, he put ALL of my symptoms together, along with my MRI, and relapses and diagnosed me. So, after 12 years of dealing with what I was told is MS, I have no doubts. But I am left wondering what on God's green earth is going on with this guy? Now, I don't know if I want to keep seeing him or if I trust him, and if not, then where do I go? Has he found other patients misdiagnosed by the other doc? Does he just have his own agenda? Was this all to get me to take meds? Has it been long enough now to be able to diagnose this as benign MS? Do I have something along with MS? Was the MRI faulty (they kept telling me to stop moving)? All I know is I'm dizzy. And I have a stress-induced headache. And a lot of questions I hope someone may have some thoughts on.
The story starts in 1998 when I started having pins and needles and numbness. No dx from family doctor, no mention could be MS. Then in 2001 symptoms worsened and I saw a specialist in MS. After an MRI, he said there were lesions but not enough to diagnose me with MS. He told me he expected I would have a diagnosis of it within 3-5 years. Jump to 2004. New symptoms arose and I saw a different MS specialist, (an expert nationally in the field of MS, that's important later), and he diagnosed me with MS.
While in his care I had 3 relapses in the span of 6 years. He told me my MS was mild and mostly sensory. My symptoms support that to this day. I have a few more balance issues than I did then and some more weakness, but I'm also older now, not the spring chicken I was then. I was on Avonex, after 2 years so he took me off because of worsening depression and a relapse. Tried Copaxone, allergic reaction. I decided then no more DMD's. He understood I knew the issues without them and respected my decision. So we did Solu-Medrol every 3 months.
This MS doc is in a nearby city and I am mostly on my own. Because of the drive, especially doing Solu-Medrol and if I needed more serious hospitalization, I wanted a doc more local.
In 2011, I saw a local neuro. First visit, great. Second visit in 2012, almost came to blows over my decision to stay off DMD's. My MRI's didn't change significantly from 2004 through 2012. I still knew the ramifications. I give a great deal of consideration to the doctor's recommendations. But, at the end of the day, this is my decision. I am pro-active with all of my healthcare. He didn't take my position to well, sort of the "do it because I say so" mentality. Not good with me. So, I didn't see a neurologist from 2012 until this year.
I went to the only other local neurologist in January and today. First visit, fine, going over the history, ordering tests, etc. I told him my position on DMD's at the first visit. Today's visit was a disaster. He tells me he doesn't think I have MS! HUH? That the lesions don't seem to him to follow the pattern of MS and that I should have a spinal tap so I can know for sure and get a second opinion from another MS specialist. Who?
Well, the same one I went to in 2001. That way I will know I have it and I can start medication. I pointed out to him it wouldn't matter, I still wouldn't take the medication. So, our conversation went like this. He said "oh, well there is no reason to then, but I still think it could be something besides MS". Like what? Small fiber neuropathy, because I have pins and needles. Does this cause lesions in the brain? No. What test is there for that? Skin biopsy. Well, what would cause the lesions then. Smoking and migraines. But, I didn't have migraines in 2004 and gee, I don't have migraines now. He asked if I get headaches. Yes. No nausea, no vomiting, no auras, and aspirin takes them away, I just get them for a few days every 3-6 months. And he latched onto that as migraine? Then I've found the cure for migraines folks, aspirin.
At that point, I told this doc that I would not go down a path I went down from 1998 to 2004 to confirm a diagnosis I already had or to look for something else he can't logically explain I have. He explained just because a nationally known expert in the field of MS said I had MS doesn't mean I do, people make mistakes. And the other doctors I saw, including one for my disability, just said I did because the expert said I did.
At that point, I became so dizzy, just got off a roller coaster dizzy, and I had told him this symptom both visits. Stress causes it to rear it's ugly head. He glossed over that. He also glossed over my needing to hold onto the wall when I tried to walk toe to toe. And the other myriad of MS symptoms I had. Just focused on the ones that fit his theory. Both visits he asked me over and over about the pinchy/bites I get in my legs and the foot burning. That's all he asked about. Not numbness, weakness, dizziness.
I left it with him that I would have to consider if this would be a good doctor/patient relationship if he is left with treating me for something he doesn't believe I have. He said it may be benign MS and that he would leave MS on my chart since he couldn't say I don't have it either. Gee, after 45 minutes of explaining how you don't think this is MS that's mighty big of you.
When I went to the MS expert, he put ALL of my symptoms together, along with my MRI, and relapses and diagnosed me. So, after 12 years of dealing with what I was told is MS, I have no doubts. But I am left wondering what on God's green earth is going on with this guy? Now, I don't know if I want to keep seeing him or if I trust him, and if not, then where do I go? Has he found other patients misdiagnosed by the other doc? Does he just have his own agenda? Was this all to get me to take meds? Has it been long enough now to be able to diagnose this as benign MS? Do I have something along with MS? Was the MRI faulty (they kept telling me to stop moving)? All I know is I'm dizzy. And I have a stress-induced headache. And a lot of questions I hope someone may have some thoughts on.
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