Aa
I caught my MS specialist's attention!
Hi, everybody,
I managed to get in to see my MS specialist while my symptoms were still flaring up. The quite warm bath and shower, vacuuming the whole townhouse, and only having 6 hours sleep last night helped with that.
Dr. Y. came in (an hour after my appt. time, but who's counting?) and reaquainted herself with my case. When I left my MRIs with her for a week before, no one took the time to digitize them, so she didn't have copies to view. She glanced through my last visit, the reports from my MRI, and asked me questions.
Then we got to why I was there, when my sx had started, had I been ill before (she typed EVERYTHING into her notes), and asked questions about each symptom, then asked what else I had been experiencing. I went through everything that wasn't "background noise". I told her about dropping things, having trouble unlocking doors, trouble blow-drying my hair, folding sheets, etc. I told her of my dizziness and lack of balance. I told her about losing control of my bladder. She had questions about everything, like does my hand shake when I'm reaching for stuff, or all the time, have these symptoms come and gone since onset, or are they steady.
She was thorough, and sounded way more interested. For one thing, when she looked at me, my head and trunk were shaky, my shoulders would twitch, and my hand was gloriously shaky. Not only that, but it has been hurting, more and more since this latest flare. By dinner time last night, I found myself standing with my hand curled up on my chest. It's kind of glowing with nerve pain from the elbow down.
She said " your last exam was unremarkable, lets see what we've got going now." Then proceeded with the neuro testing, starting with my eyes. She was more thorough than last time, and repeated stuff, and I could see her interest growing.
She moved on to my arms, first testing tone, and tested and retested my right arm, then moved on to testing my reflexes. In the past, mine have been normal or hypo. Today some were normal, and others were WHAM! hyper! I couldn't believe it! I almost hit her as my arms jumped (she's quite a small woman). She did more tests than last time, including testing my grip strength with this strange metal oval thing I had to squeeze between the heel of my hand and my fingers. My right one burned something awful after that.
She moved to my legs after that, almost hurting herself testing the tone of them; I should have taken off my shoes. She had me lying on the table, and the shoe stuck and I think she strained something. Then I sat back up and she tested my reflexes in my legs, starting with the right, which is always just about dead because of my lower back issues. Today, wham, it shot out and almost kicked her, as did my left leg. I was very surprised.
She then wanted to see me walk, and took me out in the hall. She had me walk much more than last time, and watched intently. She then asked if I could walk on my toes, and stood right next to me, as I was unsteady and almost fell. I did fine walking on my heels. But the heel to toe, oh my! I was waving my arms and stepped out to the side, and she caught my arm.
We went back in the exam room, and she told me that there was nothing that really stood out from my exam (huh?) then continued to explain that there wasn't anything strong enough to warrant a new MRI since I had had one so recently. She said that the problems I am having would come from the cervical spine, but since my hand wasn't very weak (just glowing with nerve pain!), we would have to wait and watch.
I told her that if we get around to a new spine MRI I'd want it done on a 3 Tesla, and she frowned a little and said that of course we'd have it done at OHSU.
She continued that we must be very vigilant, and that it was very good that I came in to see her, and that I should call and get in right away if more bad stuff happens. OMG, last visit she was ready to show me the door! Things changed when she saw me in a flare! She said something about seeing real issues, then backed up and said that seeing very obvious symptoms would be very helpful in figuring out what was going on with me, and confessed that she really had no idea.
When we were discussing my fatigue, she said that it was very common in MS patients, then glanced at me and said "not that you're a MS patient!" She talked about how difficult it was to diagnose, and how we didn't want to make any mistakes. I heartily agreed. She wrote a prescription for Provigil for me, so I could use my coupon for a week's free supply. She wrote it for 200 mg. a day, 2 100 mg. tablets. She told me to start out by cutting one in half and trying that for a couple days, then seeing if more worked. She was concerned that it might add to my tremuolousness; that's the word she uses for what I call tremors, but I'm not sure how to spell it.
She suggested that I increase my Lyrica dosage to see if that would help the nerve pain in my arm, and suggested how to step up my dosage.
She said she wanted me back in a month, to see how I'm progressing. I said good, since my original follow-up with her is November 12.
She told me again to call if there were any worsening of or new symptoms.
I'm starting to like this doc! She is a very pleasant woman, very professional, but she really seems to light up when she's on the trail of some clues. I hope I'm not reading too much into this; I'll have to wait and see her chart notes.
So, all in all, it was a great appointment. I went from being a "possible small vessel ischemic disease" patient, to a neurology patient. I still have an MS specialist, and her interest in my case has grown by leaps and bounds. Woo hoo!
I feel good, for a neurology patient in a flare!
Smiles all around!
Kathy
I managed to get in to see my MS specialist while my symptoms were still flaring up. The quite warm bath and shower, vacuuming the whole townhouse, and only having 6 hours sleep last night helped with that.
Dr. Y. came in (an hour after my appt. time, but who's counting?) and reaquainted herself with my case. When I left my MRIs with her for a week before, no one took the time to digitize them, so she didn't have copies to view. She glanced through my last visit, the reports from my MRI, and asked me questions.
Then we got to why I was there, when my sx had started, had I been ill before (she typed EVERYTHING into her notes), and asked questions about each symptom, then asked what else I had been experiencing. I went through everything that wasn't "background noise". I told her about dropping things, having trouble unlocking doors, trouble blow-drying my hair, folding sheets, etc. I told her of my dizziness and lack of balance. I told her about losing control of my bladder. She had questions about everything, like does my hand shake when I'm reaching for stuff, or all the time, have these symptoms come and gone since onset, or are they steady.
She was thorough, and sounded way more interested. For one thing, when she looked at me, my head and trunk were shaky, my shoulders would twitch, and my hand was gloriously shaky. Not only that, but it has been hurting, more and more since this latest flare. By dinner time last night, I found myself standing with my hand curled up on my chest. It's kind of glowing with nerve pain from the elbow down.
She said " your last exam was unremarkable, lets see what we've got going now." Then proceeded with the neuro testing, starting with my eyes. She was more thorough than last time, and repeated stuff, and I could see her interest growing.
She moved on to my arms, first testing tone, and tested and retested my right arm, then moved on to testing my reflexes. In the past, mine have been normal or hypo. Today some were normal, and others were WHAM! hyper! I couldn't believe it! I almost hit her as my arms jumped (she's quite a small woman). She did more tests than last time, including testing my grip strength with this strange metal oval thing I had to squeeze between the heel of my hand and my fingers. My right one burned something awful after that.
She moved to my legs after that, almost hurting herself testing the tone of them; I should have taken off my shoes. She had me lying on the table, and the shoe stuck and I think she strained something. Then I sat back up and she tested my reflexes in my legs, starting with the right, which is always just about dead because of my lower back issues. Today, wham, it shot out and almost kicked her, as did my left leg. I was very surprised.
She then wanted to see me walk, and took me out in the hall. She had me walk much more than last time, and watched intently. She then asked if I could walk on my toes, and stood right next to me, as I was unsteady and almost fell. I did fine walking on my heels. But the heel to toe, oh my! I was waving my arms and stepped out to the side, and she caught my arm.
We went back in the exam room, and she told me that there was nothing that really stood out from my exam (huh?) then continued to explain that there wasn't anything strong enough to warrant a new MRI since I had had one so recently. She said that the problems I am having would come from the cervical spine, but since my hand wasn't very weak (just glowing with nerve pain!), we would have to wait and watch.
I told her that if we get around to a new spine MRI I'd want it done on a 3 Tesla, and she frowned a little and said that of course we'd have it done at OHSU.
She continued that we must be very vigilant, and that it was very good that I came in to see her, and that I should call and get in right away if more bad stuff happens. OMG, last visit she was ready to show me the door! Things changed when she saw me in a flare! She said something about seeing real issues, then backed up and said that seeing very obvious symptoms would be very helpful in figuring out what was going on with me, and confessed that she really had no idea.
When we were discussing my fatigue, she said that it was very common in MS patients, then glanced at me and said "not that you're a MS patient!" She talked about how difficult it was to diagnose, and how we didn't want to make any mistakes. I heartily agreed. She wrote a prescription for Provigil for me, so I could use my coupon for a week's free supply. She wrote it for 200 mg. a day, 2 100 mg. tablets. She told me to start out by cutting one in half and trying that for a couple days, then seeing if more worked. She was concerned that it might add to my tremuolousness; that's the word she uses for what I call tremors, but I'm not sure how to spell it.
She suggested that I increase my Lyrica dosage to see if that would help the nerve pain in my arm, and suggested how to step up my dosage.
She said she wanted me back in a month, to see how I'm progressing. I said good, since my original follow-up with her is November 12.
She told me again to call if there were any worsening of or new symptoms.
I'm starting to like this doc! She is a very pleasant woman, very professional, but she really seems to light up when she's on the trail of some clues. I hope I'm not reading too much into this; I'll have to wait and see her chart notes.
So, all in all, it was a great appointment. I went from being a "possible small vessel ischemic disease" patient, to a neurology patient. I still have an MS specialist, and her interest in my case has grown by leaps and bounds. Woo hoo!
I feel good, for a neurology patient in a flare!
Smiles all around!
Kathy
Thanks for helping me enjoy the sensation of getting moving again.
Now, if the symptoms would just move along. I'm soo tired and my balance is bad; I barely saved myself from falling down the stairs this morning, and I barely got any jolt of adrenaline fom the experience.
I'm having trouble concentrating on reading and my right hand doesn't want to work right. Dr.Y's suggestion of increasing the Lyrica dosage did lessen teh pain, at least. Unless, of course, I use it too much. good thing I don't have thi energy to use it too much!
Sorry to sound like a downer; I'm not really down mentally, just physically. I'm supposed to go out to dinner with friends tonight, one of them new, and I don't think I'll be very lively company. I'll try to take a nap and see if that helps.
Still celebrating in my fuzzy brain!
Hugs,
Kathy
Now, if the symptoms would just move along. I'm soo tired and my balance is bad; I barely saved myself from falling down the stairs this morning, and I barely got any jolt of adrenaline fom the experience.
I'm having trouble concentrating on reading and my right hand doesn't want to work right. Dr.Y's suggestion of increasing the Lyrica dosage did lessen teh pain, at least. Unless, of course, I use it too much. good thing I don't have thi energy to use it too much!
Sorry to sound like a downer; I'm not really down mentally, just physically. I'm supposed to go out to dinner with friends tonight, one of them new, and I don't think I'll be very lively company. I'll try to take a nap and see if that helps.
Still celebrating in my fuzzy brain!
Hugs,
Kathy
What a HUGE relief to finally have a doctor listen and take interest in figuring this out! I am so happy for you and I feel you're one step closer to knowing what's going on.
I'm glad that your appointment seems to have moved things forward for you. I think getting "stuck" is one of the worst parts of Limbo, or at least that is what causes me the most stress over the situation.
Thanks for sharing about how you keep your timeline and use it at appointments.
I think I am a recent convert. I used to think that bringing documentation to an appt. seemed excessive. But I recently got all of my medical records from my PCP. It is amazing to compare what they write down to what I try to verbally emphasize! I think this is a big problem for me since most (if not all) of my symptoms are "invisible."
My biggest ongoing concern, which I always state as the primary reason for seeking medical care for my condition, is how my concentration is affected. I always state that the reason I am concerned is because I can not consistently think at a high enough level to properly perform at my work. Period! The stuff happening to me scares me, yes. But the reason why I NEED TO KNOW what is going on is for the sake of my career. I was disappointed to see that none of the chart notes, from my PCP or 3 neuros, mentioned this.
So from now on, I am bringing something in writing and making sure they stick it in the file.
We all have our unique circumstances, work is just a big deal in my above example, but I think for anyone, esp. us Limbo folks, getting our point across is very important, and we may not be acheiving it verbally. (I like using a big "L" and treating us as proper nouns (-;)
I'll step off of the soap box, I guess I'm just thinking a lot lately about the imporatance of keeping a copy of all records, time-lining, and being prepared.
Again, glad to hear your ship may be getting off of the rocks and back on course!
Thanks for sharing about how you keep your timeline and use it at appointments.
I think I am a recent convert. I used to think that bringing documentation to an appt. seemed excessive. But I recently got all of my medical records from my PCP. It is amazing to compare what they write down to what I try to verbally emphasize! I think this is a big problem for me since most (if not all) of my symptoms are "invisible."
My biggest ongoing concern, which I always state as the primary reason for seeking medical care for my condition, is how my concentration is affected. I always state that the reason I am concerned is because I can not consistently think at a high enough level to properly perform at my work. Period! The stuff happening to me scares me, yes. But the reason why I NEED TO KNOW what is going on is for the sake of my career. I was disappointed to see that none of the chart notes, from my PCP or 3 neuros, mentioned this.
So from now on, I am bringing something in writing and making sure they stick it in the file.
We all have our unique circumstances, work is just a big deal in my above example, but I think for anyone, esp. us Limbo folks, getting our point across is very important, and we may not be acheiving it verbally. (I like using a big "L" and treating us as proper nouns (-;)
I'll step off of the soap box, I guess I'm just thinking a lot lately about the imporatance of keeping a copy of all records, time-lining, and being prepared.
Again, glad to hear your ship may be getting off of the rocks and back on course!
Thank you all, it really did feel encouraging today. At the end of the visit, I gave her my updated Timeline, and she asked if it was a copy that she could keep, and that it would be very helpful.
I had faxed her an earlier version of my Timeline, but it must have just gotten filed. It wasn't as streamlined and to the point, anyway. I keep my Timeline in a Word file and update it as new events happen. I tend to forget the dates and duration if I don't jot it down.
Sally, the neuro is only about 10 miles away, and for testing I get sent to the big hospital up on the hill, which is a whole different set of scheduling. OHSU is a gigantic teaching hospital, and the Hill includes the V.A. hospital, a children's hospital, and a whole lot more. You could get lost without a map. I do know my way to MRI and the film library, so I'm prepared! :o)
On our next visit we'll discuss the tests she did send me for; thyroid antibodies and an MRA of my neck and head, both of which were lovely in their healthy picture of me. We'll also have information from my urogynecologist, and whatever testing she might do.
Things are moving along. It's a slow boat through limboland, but at least I've met a lot of great people!
Kathy
I had faxed her an earlier version of my Timeline, but it must have just gotten filed. It wasn't as streamlined and to the point, anyway. I keep my Timeline in a Word file and update it as new events happen. I tend to forget the dates and duration if I don't jot it down.
Sally, the neuro is only about 10 miles away, and for testing I get sent to the big hospital up on the hill, which is a whole different set of scheduling. OHSU is a gigantic teaching hospital, and the Hill includes the V.A. hospital, a children's hospital, and a whole lot more. You could get lost without a map. I do know my way to MRI and the film library, so I'm prepared! :o)
On our next visit we'll discuss the tests she did send me for; thyroid antibodies and an MRA of my neck and head, both of which were lovely in their healthy picture of me. We'll also have information from my urogynecologist, and whatever testing she might do.
Things are moving along. It's a slow boat through limboland, but at least I've met a lot of great people!
Kathy
That is great! I had visits like that with my first neuro, in 2001, but none since then (I live in a different town now...)!
That is just wonderful!
It is great to have someone listen to you!
Richard
That is just wonderful!
It is great to have someone listen to you!
Richard
Congratulations for the Neuro finally listening to you. Where is your Neuro located? Is she aware of how long you have to drive to get there? Maybe you can convince her to do some testing while you are there for your next visit,citing the long travel time.
Just a thought.
Good luck,
Sally
Just a thought.
Good luck,
Sally
Wow, sounds like a productive dr visit. At least she is taking interest in you and your symptoms and not dismissing you.
I am so happy for you, I can even hear your excitement in your typed word. Hang in there, Kathy, maybe it won't be too much longer before you get your answers.
Hugs
doni
I am so happy for you, I can even hear your excitement in your typed word. Hang in there, Kathy, maybe it won't be too much longer before you get your answers.
Hugs
doni
Kathy,
It is good to hear that you are finally making some progress and I am relieved to hear you say you think you like this neuro. You know the drill well - keep documenting and call her if anything changes.
My best,
Lulu
It is good to hear that you are finally making some progress and I am relieved to hear you say you think you like this neuro. You know the drill well - keep documenting and call her if anything changes.
My best,
Lulu
On my first visit with her, most of my symptoms had resolved. I showed up with a fat notebook of my medical history, including MRIs, lab results, other test results, and so on. She hardly glanced at my notebook, though it helped me answer some of her questions.
She had the notes from my first two neuros that thought I had ischemic disease, and said a few rude things about me, like I'm making stuff up. My lesions aren't textbook, so I'm afraid that she just followed the crowd.
Today I show up with a flare of symptoms, and suddenly she wants to know more. I wish she would have sent me for more tests, but at least she is interested in following my case. She seemed genuinely concerned. Maybe she did just have a hangover that first visit, Rena! Oh, I remember, she was coming down with the flu or something. I was just glad that I hadn't caught it from her!
OK, my symptoms can calm down now, OK? Unless my arm wants to weaken just enough to get me sent for a more powerful cervical and thoracic MRI...
Kathy
She had the notes from my first two neuros that thought I had ischemic disease, and said a few rude things about me, like I'm making stuff up. My lesions aren't textbook, so I'm afraid that she just followed the crowd.
Today I show up with a flare of symptoms, and suddenly she wants to know more. I wish she would have sent me for more tests, but at least she is interested in following my case. She seemed genuinely concerned. Maybe she did just have a hangover that first visit, Rena! Oh, I remember, she was coming down with the flu or something. I was just glad that I hadn't caught it from her!
OK, my symptoms can calm down now, OK? Unless my arm wants to weaken just enough to get me sent for a more powerful cervical and thoracic MRI...
Kathy
Well...makes ya wonder if she had a hangover or something the last time doesn't it? She sounds like she is finally interested and that you have piqued this interest by sticking to your story and telling it like it is! For her to even tell you to let her know of any problems between now and the next appointment is in my mind a very good sign! I hope this works for you honey and that you finally get some relief with the Provigil and increasing the Lyrica. Be careful with the Lyrica...it is renowned for it's nasty side effects but if it works it works real good!
You have to keep us updated at to your progress between now and Nov. 12...it will be very interesting!
Lots of Hugs,
Rena
You have to keep us updated at to your progress between now and Nov. 12...it will be very interesting!
Lots of Hugs,
Rena
I'm so glad it went well for you, she actually listened and ask you all sorts of questions...did another exam and wants you back...well, that's a good sign. I'm not happy your feeling so out of it...and hope the meds will help with the nerve pain etc...
take care and keep us updated..
wobbly
undx
take care and keep us updated..
wobbly
undx
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