Why is it so hard to get doctors to listen to you?
I am sorry for the lack of update yesterday over my appointment with my neurologist, however, I needed a day to simply calm down so that I could write competently about the incompetence of the day.
First, let me back track. On Monday, I went to see my brother-in-law, who is a chiropractor, and he did several of the reflex, neurology, etc. tests that my neurologist did, and some other ones that the neurologist didn't do, and he told me some things that my neurologist didn't mention. For example, my right eye, the one that is bothering me, the pupil isn't contracting properly. That and a couple of other things, and he agreed that it meant something was askew in my central nervous system. We talked about the possibility of me having MS, which was also what my general practitioner had mentioned.
He wanted to go with me to the neurologist's appointment, but unfortunately already had his own patients booked for the same morning. So, I told him I would fill out whatever paperwork I needed to so that they could talk to him directly.
My condition also seems to be getting worse - not quickly worse, but definitely not better. I now have numbness in my face, primarily on my right side, along my forehead, nose, cheek, and chin out towards my ear. And by numbness, I mean I can't feel light touches and harder or sharp ones feel like pressure instead of sharp. I noticed it when I put my glasses on for something on Monday I think, so I don't know exactly when that happened, maybe that day or before? In any case, it's definitely not right. And I am getting weaker in my right arm. I can barely operate a track ball, and I think I dropped it about ten times on Sunday. Not to mention just how tired I am all the time - and I mean bone tired, even after sleeping 8-10 hours in a row.
Wednesday evening was when I actually for the first time started to fret, if only a little, over my appointment on Thursday. I guess it was just an anxiousness that goes with knowing there's something wrong with you, and being afraid of hearing what that something is. Consequentially, I slept, but woke up several times during the night.
Thursday morning comes, and I get up, and dressed, and astralfire drives me to my appointment (it's been pretty safely determined that I shouldn't be driving especially during the hotter parts of the day when I am likely to feel worse). We get there well on time (if not a little early), and sign in, etc.
We get called back and the nurse takes my blood pressure, asks about how I am feeling, etc. then says that the doctor will be in shortly and leaves. AN HOUR later, this Physician's Assistant walks in and thanks me for waiting so patiently, and tells me that the doctor is looking at my MRIs now, but he doesn't think he sees any lesions on the MRI films. And that I should be happy because she knows that there's nothing wrong with me physically to be causing these symptoms, and that I positively can not have MS. She then asks me all the same questions the doctor had asked me a week and a half ago, and does all the same tests, and then begins to ask me if I am under any extra stress, or feeling depressed, or having crying spells. And she proceeds to continue to ask me this no less than ten times during the course of speaking with me. Then she leaves and comes back about 30 minutes later, and proceeds to tell me that she thinks I might have a slipped disk in my neck (I really suspect that my chiropractor brother-in-law would recognize something like this), or maybe I simply have a migraine (which I have had migraines off and on most of my life, and I happen to know very acutely when I am suffering from one), and I really should see an ophthalmologist to check out "that problem with my eye". Then she left again.
During all of this she's being very condescending, and treating me like I am a simpleton, and right in my face. astralfire tried more than once to say something to her, and she just cut him off and dismissed him. And she definitely wasn't listening to anyone.
A little while, maybe 10 or 15 minutes later, the student doctor that had been with her came back to see us and said we could go. She was standing by the check out center and said that she wanted me to have some blood tests "just in case". They included me having my thyroid checked, and testing me for lupus, Lyme's disease, and clotting disorders (which, HELLO, I have a history of pulmonary emboli, of course I have clotting issues).
She then says, "Oh, you are self pay?" And I tell her that's correct. Then she says, "Oh, well maybe we will put off this neck X-ray then." She then proceeds to lecture me on how I should go out right now and get health insurance. Because, you know, that didn't ever occur to me. Never mind that I didn't go to a doctor for almost a month when I first got sick because I was trying to find a place that would first of all, insure me, and second of all, that I could afford. Eventually, I got so ill, that I simply had to go see a doctor, insurance or not.
Then she wrote me a prescription for a drug called Indocin, which is like a glorified aspirin (normal dosage of it is similar to 600 mg of aspirin as far as the way your body responds to it), and it is used primarily to treat rheumatoid arthritis. However, in the list of common side effects are: migraines, blurred/double vision, dizziness and vertigo, (and my personal favorite) worsening of neurological symptoms such as epilepsy, Parkinson's, and psychiatric disorders. And, you know, if I wasn't feeling better in say, 3-4 weeks, I should call them.
So, let me get this straight, she wants to treat a "migraine" with a drug that is known to cause migraines!? Please file that under "What The FUCK!?"
The doctor never came in, and if I hadn't seen a glimpse of him through the glass when I first arrived, I would have suspected he wasn't there at all.
We left (after paying almost $100 for this visit), and I called my brother-in-law, by which time I was in tears. He said to go ahead and have the blood tests, that they couldn't hurt, and it would be good to have those things in my files as having been ruled out. And he would call and find out what the doctor had to say.
After some annoyances with the lab (the first one we went to said they couldn't do "self-pay", and sent us to another location, which was actually closer to our house, but still a bit of a pain to be out in the hot part of the day so long). It was almost 4:30 pm when we finally got home after having left at 9:00 am.
My brother-in-law called back and spoke to me for a while, and then to astralfire. He said that the doctor wasn't there, but he would try again this morning to talk directly to him. He said there were some inconsistencies in what he himself had found when he examined me on Monday, what the doctor had told me previously, and what the nurse read to him over the phone when he called the office. He said it was clear to him that this PA had simply decide that there wasn't anything wrong, and written me off with a pat-on-the-head prescription.
My brother-in-law is going to make some calls this morning and see if he can find me a neurologist that will listen to me. In the mean time, he's also going to contact a chiropractor friend of his that lives closer to me than he does (my brother-in-law lives about 45-50 miles from my house, and it's kind of hard for me to get down there to see him with how I am currently feeling). This friend's mom is a licensed nutritionist, and I am going to talk to her too. No one in my family (and by family I mean extended family, ie, my in-laws) thinks the chiropractor or nutritionist can "cure" me, but the hope is that they can make me feel better while I am in limbo.
Now, I am left feeling utterly ... I think lost is the right word for it. Please, believe me when I say that I in no way, shape, or form want to have MS. But, I truly believe that when it acts like a duck, looks like a duck, and quacks like a duck, it probably is a duck. And if it isn't a duck, then I just want to know what it is.
I really do not know what to do, and that's not really like me - I am usually very good at crisis management, but just add that to the list of things that I can't seem to manage any more. And I am tired of feeling like I have to defend myself, and say, you know, I realize I might look mostly ok on the outside, but something is really, truly, seriously wrong with me. I don't know what it is yet, but my body is really broken at the moment.
All I can say is, please bare with me, I still don't know what the hell is wrong.
First, let me back track. On Monday, I went to see my brother-in-law, who is a chiropractor, and he did several of the reflex, neurology, etc. tests that my neurologist did, and some other ones that the neurologist didn't do, and he told me some things that my neurologist didn't mention. For example, my right eye, the one that is bothering me, the pupil isn't contracting properly. That and a couple of other things, and he agreed that it meant something was askew in my central nervous system. We talked about the possibility of me having MS, which was also what my general practitioner had mentioned.
He wanted to go with me to the neurologist's appointment, but unfortunately already had his own patients booked for the same morning. So, I told him I would fill out whatever paperwork I needed to so that they could talk to him directly.
My condition also seems to be getting worse - not quickly worse, but definitely not better. I now have numbness in my face, primarily on my right side, along my forehead, nose, cheek, and chin out towards my ear. And by numbness, I mean I can't feel light touches and harder or sharp ones feel like pressure instead of sharp. I noticed it when I put my glasses on for something on Monday I think, so I don't know exactly when that happened, maybe that day or before? In any case, it's definitely not right. And I am getting weaker in my right arm. I can barely operate a track ball, and I think I dropped it about ten times on Sunday. Not to mention just how tired I am all the time - and I mean bone tired, even after sleeping 8-10 hours in a row.
Wednesday evening was when I actually for the first time started to fret, if only a little, over my appointment on Thursday. I guess it was just an anxiousness that goes with knowing there's something wrong with you, and being afraid of hearing what that something is. Consequentially, I slept, but woke up several times during the night.
Thursday morning comes, and I get up, and dressed, and astralfire drives me to my appointment (it's been pretty safely determined that I shouldn't be driving especially during the hotter parts of the day when I am likely to feel worse). We get there well on time (if not a little early), and sign in, etc.
We get called back and the nurse takes my blood pressure, asks about how I am feeling, etc. then says that the doctor will be in shortly and leaves. AN HOUR later, this Physician's Assistant walks in and thanks me for waiting so patiently, and tells me that the doctor is looking at my MRIs now, but he doesn't think he sees any lesions on the MRI films. And that I should be happy because she knows that there's nothing wrong with me physically to be causing these symptoms, and that I positively can not have MS. She then asks me all the same questions the doctor had asked me a week and a half ago, and does all the same tests, and then begins to ask me if I am under any extra stress, or feeling depressed, or having crying spells. And she proceeds to continue to ask me this no less than ten times during the course of speaking with me. Then she leaves and comes back about 30 minutes later, and proceeds to tell me that she thinks I might have a slipped disk in my neck (I really suspect that my chiropractor brother-in-law would recognize something like this), or maybe I simply have a migraine (which I have had migraines off and on most of my life, and I happen to know very acutely when I am suffering from one), and I really should see an ophthalmologist to check out "that problem with my eye". Then she left again.
During all of this she's being very condescending, and treating me like I am a simpleton, and right in my face. astralfire tried more than once to say something to her, and she just cut him off and dismissed him. And she definitely wasn't listening to anyone.
A little while, maybe 10 or 15 minutes later, the student doctor that had been with her came back to see us and said we could go. She was standing by the check out center and said that she wanted me to have some blood tests "just in case". They included me having my thyroid checked, and testing me for lupus, Lyme's disease, and clotting disorders (which, HELLO, I have a history of pulmonary emboli, of course I have clotting issues).
She then says, "Oh, you are self pay?" And I tell her that's correct. Then she says, "Oh, well maybe we will put off this neck X-ray then." She then proceeds to lecture me on how I should go out right now and get health insurance. Because, you know, that didn't ever occur to me. Never mind that I didn't go to a doctor for almost a month when I first got sick because I was trying to find a place that would first of all, insure me, and second of all, that I could afford. Eventually, I got so ill, that I simply had to go see a doctor, insurance or not.
Then she wrote me a prescription for a drug called Indocin, which is like a glorified aspirin (normal dosage of it is similar to 600 mg of aspirin as far as the way your body responds to it), and it is used primarily to treat rheumatoid arthritis. However, in the list of common side effects are: migraines, blurred/double vision, dizziness and vertigo, (and my personal favorite) worsening of neurological symptoms such as epilepsy, Parkinson's, and psychiatric disorders. And, you know, if I wasn't feeling better in say, 3-4 weeks, I should call them.
So, let me get this straight, she wants to treat a "migraine" with a drug that is known to cause migraines!? Please file that under "What The FUCK!?"
The doctor never came in, and if I hadn't seen a glimpse of him through the glass when I first arrived, I would have suspected he wasn't there at all.
We left (after paying almost $100 for this visit), and I called my brother-in-law, by which time I was in tears. He said to go ahead and have the blood tests, that they couldn't hurt, and it would be good to have those things in my files as having been ruled out. And he would call and find out what the doctor had to say.
After some annoyances with the lab (the first one we went to said they couldn't do "self-pay", and sent us to another location, which was actually closer to our house, but still a bit of a pain to be out in the hot part of the day so long). It was almost 4:30 pm when we finally got home after having left at 9:00 am.
My brother-in-law called back and spoke to me for a while, and then to astralfire. He said that the doctor wasn't there, but he would try again this morning to talk directly to him. He said there were some inconsistencies in what he himself had found when he examined me on Monday, what the doctor had told me previously, and what the nurse read to him over the phone when he called the office. He said it was clear to him that this PA had simply decide that there wasn't anything wrong, and written me off with a pat-on-the-head prescription.
My brother-in-law is going to make some calls this morning and see if he can find me a neurologist that will listen to me. In the mean time, he's also going to contact a chiropractor friend of his that lives closer to me than he does (my brother-in-law lives about 45-50 miles from my house, and it's kind of hard for me to get down there to see him with how I am currently feeling). This friend's mom is a licensed nutritionist, and I am going to talk to her too. No one in my family (and by family I mean extended family, ie, my in-laws) thinks the chiropractor or nutritionist can "cure" me, but the hope is that they can make me feel better while I am in limbo.
Now, I am left feeling utterly ... I think lost is the right word for it. Please, believe me when I say that I in no way, shape, or form want to have MS. But, I truly believe that when it acts like a duck, looks like a duck, and quacks like a duck, it probably is a duck. And if it isn't a duck, then I just want to know what it is.
I really do not know what to do, and that's not really like me - I am usually very good at crisis management, but just add that to the list of things that I can't seem to manage any more. And I am tired of feeling like I have to defend myself, and say, you know, I realize I might look mostly ok on the outside, but something is really, truly, seriously wrong with me. I don't know what it is yet, but my body is really broken at the moment.
All I can say is, please bare with me, I still don't know what the hell is wrong.