Doctors, VEPs, and Spinal Taps - OH MY!
Aug. 1st, 2007 02:16 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
cassy_gSorry for the delay in posting an update on my health. Truthfully, there hasn't been a lot to say other than, "I still feel like hell."
After the previous post about the Physician's Assistant from Hell, I did some searching around, and found a neurologists' office closer to me and decided to give them a try. I liked that they were close, and that they were a "practice" (ie, there was more than one doctor there), and that they seemed to be very diverse in their knowledge and experiences (two of the doctor's are from India, and one is from South Africa, and all of them are very well educated). So, after calling them up, explaining why I needed to see a neurologist, and the horrid experience I had with the last one, the soonest they could see me was this past Monday.
They called earlier last week to change my appointment time, because the doctor I was initially suppose to see wasn't going to be available. Since I didn't really have a preference on the doctor I saw, they changed my appointment to later in the afternoon with Dr. Maloon (the doctor from South Africa). Since I had such a bad experience before, I decided to do some research on the doctor.
What I found out was that he graduated from the University of Whitwatersrand, in Johannasburg, South Africa, with a D.O. which is a Doctor of Osteopathy. Then when he came to the States, he did his residency at the University of Massachusettes Medical Center, and he's a board certified neurologist.
I didn't actually know what a D.O. was, so I looked it up. This is what Wikipedia has to say:
Honestly, I must admit to a certain trepidation when I first read it. As you all know, I am a woman of science and logic, and seeing "holistic" in description with a doctor for some reason in my brain made me think of faith healers like Benny Hinn and Peter Popoff.
After talking to my Finnish friend, and several other people, I felt better about it. Actually, once I spoke to them and thought about it, I realized that a doctor that's willing to look at me as a whole was a really good thing (since I have previous medical issues). So, I decided I would go see what he had to say.
On a side note, the old neurologists office is being a pain in the ass about sending my blood work to the new doctor. I may bloody well have to drive out there and demand them in person.
In any case, I went to my appointment on Monday, not really knowing what to expect, and feeling a little anxious because of the previous experience. I was having a rather difficult time on Monday too, walking and gripping. Let me tell you, filling out forms when you can't hold a pen is a real pain in the arse.
Eventually, we were called back, and the assistant took us to the doctor's office instead of an examination room. He said he wanted to talk to me about what had been going on before examining me, and take a look at my MRIs. We talked for about 30 minutes or so with him taking notes then he had us wait in an exam room while he looked at my MRIs.
When he came in, he said that with a person my age with my symptoms, you were really looking at them having Multiple Sclerosis, but the good and bad news was that my MRIs are clean. What that means to him is that he can't at this moment give me a positive diagnosis, but that I have what's for now considered to be "probable MS". He then did a couple of tests, reflex ones, checking weakness in my hands, and looking at my eyes really closely. He didn't do nearly as many tests as the other doctor had done, but upon reflection (and speaking with a friend), I think he must have been paying a lot of attention to me while we were talking in his office.
He said I had definate weakness on my right side, and on the right side of my face, and that my optic nerve in the right eye was "pale". I asked him what that meant, and he said that it was a sign of having had optic neuritis (which was probably what was causing that extreme headache behind my right eye before). He said that some people get optic neuritis and never have any other symptoms or explination as to why they got it, but for me, he wanted me to have a Visual Evoked Response test, to see if there was scarring on the optic nerve (and I guess which will help him with a diagnosis). He also asked me to go and have a spinal tap.
My spinal tap is scheduled for Monday morning at 8 AM at Wellstar Kennestone Hospital. I have to be there 30 minutes early, and stay for 4-5 hours after the proceedure. I am still waiting for my VEP to be scheduled (they didn't answer on Monday, and I missed their call on Tuesday). I do know that they didn't want me to have them the same day, because they said that the spinal tap would be more than enough for one day. He's having my spinal fluids sent to the Mayo Clinic in Rochester, so it's going to take a while for the results to come back.
He said that I should be patient, that I have a long road ahead of me, and that he didn't want to "pollute my system" with a lot of drugs right now. He did write me a prescription for a drug called Cymbalta, which he told me up front was an anti-depressant, but that it was also used to treat people with fatigue and peripheral neurological pain. He said that if it wasn't working to give him a call, that there were other things he could give me for the fatigue, but that he didn't want to put too much on my system at once.
Because of the delay with the spinal tap, he wanted me to come back in 4-6 weeks, which of course, they wanted to schedule the week before Dragon*Con! Needless to say, I put it off until a week after, so, I am not going back until September 10th.
Obviously, I would feel better if the doctor could have just said, "This is what's wrong with you, and this is what we are going to do about it." But, despite his still needing to do tests on me, I get the feeling that he already knows what's wrong, and is just looking for some test results to confirm it. I also feel good about the fact that he's taking me seriously, and that he's willing to put the effort into sorting it out before just throwing alot of drugs at me.
He said I need to take it easy, not push myself too hard, and rest when I need to do so. It's AUGUST! Is he insane!? But seriously, he didn't have to tell me that, my body MAKES me do those things whether I want to or not!
I checked out Cymbalta, and then had the prescrition filled. I took my first dose on Monday evening around 8 PM and went to bed around 10 PM. I woke up at 3 AM feeling really, REALLY nauseous. And I felt like... hm... I can't really describe it. It was just really weird, my brain felt like I was in the middle of a waking dream, like everything was a little less crisp than it should have been. Oh, and my pupils were the size of saucers! So everything had a soft white glow to it. I guess I was feeling high!
Around 5:45 AM I fell back to sleep, when I needed to get up at 6:00 AM to go to Emory. I spent the next hour sleeping off and on. I would wake up and literally couldn't move because I had such bad tremors (which stuck with me the rest of the day). Eventually, I managed to get up, get dressed and out the door. I didn't get to Emory until a little after 9 AM!
While I did better than I thought I was going to (which I attribute to the drug actually), I was no where near what I consider "normal". I had wanted to stay until 4 PM, but by 2 PM I was really worn out.![[livejournal.com profile]](https://www.dreamwidth.org/img/external/lj-userinfo.gif)
astralfire (aka My Personal Chauffeur) had the forsight not to go too far away (since it's about an hour to an hour and a half drive from my house). So, when I called him, he was there by about a quarter after.
Once I was in the car, and just sitting still and not thinking about working or anything I realized how tired I was. I was having tremors in my arms and legs, and my whole body felt sore. I even dozed off and on during the trip home. Once I got home, I had a small bite to eat and curled up in bed and slept for almost eight hours! When I did get up, it was only for a short time to finish up some work for Emory (since I had left early), and then I was back in bed by 3 AM and slept until 10 AM. The good news is that I was awake already during the nausea, and it wasn't nearly as bad as it had been the night before. My pupils are still huge though! I guess that's something that will eventually level out in my system.
Fortunately, things went well yesterday, so I could stay home today (and nap alot). I do have to go back tomorrow, but I am hopeful that it can get completely wrapped up then.
In any case, I am about ready to go take said nap, but I wanted to let you all know what's been going on. Thank you all for being patient and for all the well wishes.
After the previous post about the Physician's Assistant from Hell, I did some searching around, and found a neurologists' office closer to me and decided to give them a try. I liked that they were close, and that they were a "practice" (ie, there was more than one doctor there), and that they seemed to be very diverse in their knowledge and experiences (two of the doctor's are from India, and one is from South Africa, and all of them are very well educated). So, after calling them up, explaining why I needed to see a neurologist, and the horrid experience I had with the last one, the soonest they could see me was this past Monday.
They called earlier last week to change my appointment time, because the doctor I was initially suppose to see wasn't going to be available. Since I didn't really have a preference on the doctor I saw, they changed my appointment to later in the afternoon with Dr. Maloon (the doctor from South Africa). Since I had such a bad experience before, I decided to do some research on the doctor.
What I found out was that he graduated from the University of Whitwatersrand, in Johannasburg, South Africa, with a D.O. which is a Doctor of Osteopathy. Then when he came to the States, he did his residency at the University of Massachusettes Medical Center, and he's a board certified neurologist.
I didn't actually know what a D.O. was, so I looked it up. This is what Wikipedia has to say:
Osteopathy is an approach to healthcare that emphasizes the role of the musculoskeletal system in health and disease. In most countries osteopathy is a form of complementary medicine, emphasizing a holistic approach and the skilled use of a range of manual and physical treatment interventions (Osteopathic Manipulative Medicine, or OMM in the United States) in the prevention and treatment of disease, particularly, musculoskeletal problems such as back and neck pain. Many osteopaths see their role as facilitating the body's own recuperative powers by treating musculoskeletal or somatic dysfunction. In the United States, Doctors of Osteopathy (D.O.s) are fully licensed medical physicians and surgeons. Just like M.D.s, D.O.s practice the full scope of medicine, but with an emphasis on the role of the musculoskeletal system.
Honestly, I must admit to a certain trepidation when I first read it. As you all know, I am a woman of science and logic, and seeing "holistic" in description with a doctor for some reason in my brain made me think of faith healers like Benny Hinn and Peter Popoff.
After talking to my Finnish friend, and several other people, I felt better about it. Actually, once I spoke to them and thought about it, I realized that a doctor that's willing to look at me as a whole was a really good thing (since I have previous medical issues). So, I decided I would go see what he had to say.
On a side note, the old neurologists office is being a pain in the ass about sending my blood work to the new doctor. I may bloody well have to drive out there and demand them in person.
In any case, I went to my appointment on Monday, not really knowing what to expect, and feeling a little anxious because of the previous experience. I was having a rather difficult time on Monday too, walking and gripping. Let me tell you, filling out forms when you can't hold a pen is a real pain in the arse.
Eventually, we were called back, and the assistant took us to the doctor's office instead of an examination room. He said he wanted to talk to me about what had been going on before examining me, and take a look at my MRIs. We talked for about 30 minutes or so with him taking notes then he had us wait in an exam room while he looked at my MRIs.
When he came in, he said that with a person my age with my symptoms, you were really looking at them having Multiple Sclerosis, but the good and bad news was that my MRIs are clean. What that means to him is that he can't at this moment give me a positive diagnosis, but that I have what's for now considered to be "probable MS". He then did a couple of tests, reflex ones, checking weakness in my hands, and looking at my eyes really closely. He didn't do nearly as many tests as the other doctor had done, but upon reflection (and speaking with a friend), I think he must have been paying a lot of attention to me while we were talking in his office.
He said I had definate weakness on my right side, and on the right side of my face, and that my optic nerve in the right eye was "pale". I asked him what that meant, and he said that it was a sign of having had optic neuritis (which was probably what was causing that extreme headache behind my right eye before). He said that some people get optic neuritis and never have any other symptoms or explination as to why they got it, but for me, he wanted me to have a Visual Evoked Response test, to see if there was scarring on the optic nerve (and I guess which will help him with a diagnosis). He also asked me to go and have a spinal tap.
My spinal tap is scheduled for Monday morning at 8 AM at Wellstar Kennestone Hospital. I have to be there 30 minutes early, and stay for 4-5 hours after the proceedure. I am still waiting for my VEP to be scheduled (they didn't answer on Monday, and I missed their call on Tuesday). I do know that they didn't want me to have them the same day, because they said that the spinal tap would be more than enough for one day. He's having my spinal fluids sent to the Mayo Clinic in Rochester, so it's going to take a while for the results to come back.
He said that I should be patient, that I have a long road ahead of me, and that he didn't want to "pollute my system" with a lot of drugs right now. He did write me a prescription for a drug called Cymbalta, which he told me up front was an anti-depressant, but that it was also used to treat people with fatigue and peripheral neurological pain. He said that if it wasn't working to give him a call, that there were other things he could give me for the fatigue, but that he didn't want to put too much on my system at once.
Because of the delay with the spinal tap, he wanted me to come back in 4-6 weeks, which of course, they wanted to schedule the week before Dragon*Con! Needless to say, I put it off until a week after, so, I am not going back until September 10th.
Obviously, I would feel better if the doctor could have just said, "This is what's wrong with you, and this is what we are going to do about it." But, despite his still needing to do tests on me, I get the feeling that he already knows what's wrong, and is just looking for some test results to confirm it. I also feel good about the fact that he's taking me seriously, and that he's willing to put the effort into sorting it out before just throwing alot of drugs at me.
He said I need to take it easy, not push myself too hard, and rest when I need to do so. It's AUGUST! Is he insane!? But seriously, he didn't have to tell me that, my body MAKES me do those things whether I want to or not!
I checked out Cymbalta, and then had the prescrition filled. I took my first dose on Monday evening around 8 PM and went to bed around 10 PM. I woke up at 3 AM feeling really, REALLY nauseous. And I felt like... hm... I can't really describe it. It was just really weird, my brain felt like I was in the middle of a waking dream, like everything was a little less crisp than it should have been. Oh, and my pupils were the size of saucers! So everything had a soft white glow to it. I guess I was feeling high!
Around 5:45 AM I fell back to sleep, when I needed to get up at 6:00 AM to go to Emory. I spent the next hour sleeping off and on. I would wake up and literally couldn't move because I had such bad tremors (which stuck with me the rest of the day). Eventually, I managed to get up, get dressed and out the door. I didn't get to Emory until a little after 9 AM!
While I did better than I thought I was going to (which I attribute to the drug actually), I was no where near what I consider "normal". I had wanted to stay until 4 PM, but by 2 PM I was really worn out.
astralfire (aka My Personal Chauffeur) had the forsight not to go too far away (since it's about an hour to an hour and a half drive from my house). So, when I called him, he was there by about a quarter after.Once I was in the car, and just sitting still and not thinking about working or anything I realized how tired I was. I was having tremors in my arms and legs, and my whole body felt sore. I even dozed off and on during the trip home. Once I got home, I had a small bite to eat and curled up in bed and slept for almost eight hours! When I did get up, it was only for a short time to finish up some work for Emory (since I had left early), and then I was back in bed by 3 AM and slept until 10 AM. The good news is that I was awake already during the nausea, and it wasn't nearly as bad as it had been the night before. My pupils are still huge though! I guess that's something that will eventually level out in my system.
Fortunately, things went well yesterday, so I could stay home today (and nap alot). I do have to go back tomorrow, but I am hopeful that it can get completely wrapped up then.
In any case, I am about ready to go take said nap, but I wanted to let you all know what's been going on. Thank you all for being patient and for all the well wishes.
