Aa
Seeing neuro this morning, no sleep; what should I ask? Gulp!
If anyone is around this morning, I could use some words of wisdom and/or advice.
I had a rough night last night, and have to be to the doctor by 10 am Pacific. I need to shower and try to pull my thoughts together. This is my first follow-up since diagnosis and starting Avonex 3 months ago.
I can't think of what I really want to ask; three main things I want to discuss. I want to get my Provigil approved, but that shouldn't be the top of my list.
I want to discuss nerve pain, where it originates, and how best to treat it.
I'm wondering if my recent increased heartrate and palpitations with exertion could be related to Avonex, increased Tegretol dosage, taking Provigil frequently, MS, or none of the above.
I would like to know what led him to diagnose me; location of lesions, any neuro exam irregularities, history, what? I want to know if my diagnosis is set; if he retired, would I still be on Avonex.
I'm sure there are lots of other things, but i can't seem to sort things out this morning. I'm going to shower now; if anyone is around and has any thoughts, please share!
Hugs,
Kathy
I had a rough night last night, and have to be to the doctor by 10 am Pacific. I need to shower and try to pull my thoughts together. This is my first follow-up since diagnosis and starting Avonex 3 months ago.
I can't think of what I really want to ask; three main things I want to discuss. I want to get my Provigil approved, but that shouldn't be the top of my list.
I want to discuss nerve pain, where it originates, and how best to treat it.
I'm wondering if my recent increased heartrate and palpitations with exertion could be related to Avonex, increased Tegretol dosage, taking Provigil frequently, MS, or none of the above.
I would like to know what led him to diagnose me; location of lesions, any neuro exam irregularities, history, what? I want to know if my diagnosis is set; if he retired, would I still be on Avonex.
I'm sure there are lots of other things, but i can't seem to sort things out this morning. I'm going to shower now; if anyone is around and has any thoughts, please share!
Hugs,
Kathy
Everyone knows I'm not happy that Quix is feeling worse, right? I'm just happy that she gets to see my neuro, who's a really compassionate guy.
Way cool, Quix! I'm so happy for you! Woo hoo, if my foot didn't hurt I'd do a happy dance for you!
Kat
Kat
Kathy - I called Dr. C 's office to tell him that I am having more symptoms and they are going to have me see him next Monday morning! Oh, Yay! Oh, Joy!
Q
Q
Quix, I'm sending your $5; that's half of the co-pay at the time of your advice, lol! Won't help much towards your MS meds. Keep the advice coming; my co-pay is now $25 in network; you're probably out of network, so it's $35. Keep a running tab; I'll buy lunch! :o)
I was thinking about when I had the OCT; end of 2008. I remember an incident of Picasso face at the end of May 2009, when my vision was more blurry, my dizziness worse, and I had an attack of TN. That could have been the perfect storm, I guess. My PCP did note that one pupil appeared larger.
Pastor Dan, I'll pass that on about the vacation spots by you. My fundoscopic exams were always normal, too, my VEP was normal. OCT is something like Optical Computerized Tomography, gives a very special picture of the optic nerve that can show the slightest thinning or fraying, whatever optic nerves do when they've been offended.
You could try getting your chart notes from your ophthalmologist, see if it makes anything clearer (ha ha), jogs your memory. My original ophtha had almost unreadable handwritten notes, but the neuro-opthalmologist had wonderfully clear notes. I get all my records.
I'm off to see my PCP this morning, cover what my neuro didn't and update her on the changes since I saw her last.
Take care,
Kathy
I was thinking about when I had the OCT; end of 2008. I remember an incident of Picasso face at the end of May 2009, when my vision was more blurry, my dizziness worse, and I had an attack of TN. That could have been the perfect storm, I guess. My PCP did note that one pupil appeared larger.
Pastor Dan, I'll pass that on about the vacation spots by you. My fundoscopic exams were always normal, too, my VEP was normal. OCT is something like Optical Computerized Tomography, gives a very special picture of the optic nerve that can show the slightest thinning or fraying, whatever optic nerves do when they've been offended.
You could try getting your chart notes from your ophthalmologist, see if it makes anything clearer (ha ha), jogs your memory. My original ophtha had almost unreadable handwritten notes, but the neuro-opthalmologist had wonderfully clear notes. I get all my records.
I'm off to see my PCP this morning, cover what my neuro didn't and update her on the changes since I saw her last.
Take care,
Kathy
Pallor in the optic disk indicates atrophy? I thought it indicated inflammation. I do remember from somewhere that 2/3(?) of all ON can't be seen via fundoscopy. Like other stuff back there, I'm guessing those cases don't always show on MRIs, either. What about VEPs? I've not seen definitive information on that from anyone who sounded credible. Will everyone who's ever had ON score a positive VEP?
No, of course I don't want ON, but I want to know why my eyes are screwed up. Yes, I said that out loud. I have no pallor, I'm told, and a normal VEP (by a lab I consider iffy). The last ophthalmologist did say that one eye "looks very good" but when he spoke of the other one, he paused a second and said that it "doesn't look particularly bad, either." Wish I could remember which was which.
I also wish i knew why the prism is being added to my left lens rather than the right, but Dr. K. is so fast that I might well have missed something he said when we got to that issue. My right eye gives me more trouble, I think.
Sigh.
Kathy, let your neuro know that there are some beautiful vacation spots in central Ohio. I'm so glad you're getting answers. I just wish I was doing the same.
Shalom to all.
No, of course I don't want ON, but I want to know why my eyes are screwed up. Yes, I said that out loud. I have no pallor, I'm told, and a normal VEP (by a lab I consider iffy). The last ophthalmologist did say that one eye "looks very good" but when he spoke of the other one, he paused a second and said that it "doesn't look particularly bad, either." Wish I could remember which was which.
I also wish i knew why the prism is being added to my left lens rather than the right, but Dr. K. is so fast that I might well have missed something he said when we got to that issue. My right eye gives me more trouble, I think.
Sigh.
Kathy, let your neuro know that there are some beautiful vacation spots in central Ohio. I'm so glad you're getting answers. I just wish I was doing the same.
Shalom to all.
Could I at least get half the co-pay, so that I could afford my MS meds???
Maybe the changes have occurred in the meantime since the OCT and after seeing the neuro-ophtho.
Q
Maybe the changes have occurred in the meantime since the OCT and after seeing the neuro-ophtho.
Q
I found this by googling; Quix remembered Marcus Gunn correctly, and it sounds like I may have had a mild bout of ON at some point:
This is a phenomenon called afferent pupillary defect (APD), also referred to as Marcus Gunn Pupil. It occurs when the nerve pathways from the eyes to the brain fail to transmit messages properly. In people with multiple sclerosis (MS), it usually happens because the person has had optic neuritis, even if the episode was so mild that they were not aware that it occurred.
APD is identified by examining the eyes with a bright light. During a neurological exam, this is called the swinging flashlight test, when the doctor shines the flashlight in one eye and then the other.
In normal circumstances, when a light is shone in one eye, both pupils constrict (get smaller) at the same time. However, when a light is shone in the affected eye of a patient with an APD, the pupil of the affected eye dilates (gets larger) rather than constricts. This abnormal response signifies the brain is not receiving the message properly, due to demyelination of the optic nerve.
This is a phenomenon called afferent pupillary defect (APD), also referred to as Marcus Gunn Pupil. It occurs when the nerve pathways from the eyes to the brain fail to transmit messages properly. In people with multiple sclerosis (MS), it usually happens because the person has had optic neuritis, even if the episode was so mild that they were not aware that it occurred.
APD is identified by examining the eyes with a bright light. During a neurological exam, this is called the swinging flashlight test, when the doctor shines the flashlight in one eye and then the other.
In normal circumstances, when a light is shone in one eye, both pupils constrict (get smaller) at the same time. However, when a light is shone in the affected eye of a patient with an APD, the pupil of the affected eye dilates (gets larger) rather than constricts. This abnormal response signifies the brain is not receiving the message properly, due to demyelination of the optic nerve.
Quix, I will bow to your wisdom from now on!!!! Actually, you could become my doc, and just prescribe the darn things for me so I don't have to pay a $25 co-pay plus the Rx co-pay, ha ha!
Quix, so does the info about my left pupil and optic nerve point to my having had ON at some point? I wonder why it wasn't caught by the great neuro-ophtha at OHSU, and the OCT? Interesting.
Michelle, thanks for the thoughts, prayers and hugs.
terry, I found this neurologist THANKS TO QUIX!!!!!! (little more respect for her, hee hee!) I will live as well as I am able.
Hugs,
Kathy
Quix, so does the info about my left pupil and optic nerve point to my having had ON at some point? I wonder why it wasn't caught by the great neuro-ophtha at OHSU, and the OCT? Interesting.
Michelle, thanks for the thoughts, prayers and hugs.
terry, I found this neurologist THANKS TO QUIX!!!!!! (little more respect for her, hee hee!) I will live as well as I am able.
Hugs,
Kathy
Kathy I actually envy you your neurologist but I am thankful you found him :p)
live well,
terry
live well,
terry
So sorry you had such a tough day. I am also sorry things seem to be progressing for you. You are in my thoughts and prayers...
Hugs,
Michelle
Hugs,
Michelle
Afferent pupillary defect - When the light is shown in that eye, it's constriction response is sluggish or absent. I think this is a Marcus-Gunn pupil.
Nerves can be Efferent - The nerves carry signals "to" the part of the body that needs to be making the "effort". The best example of this is motor nerves, which are efferent.
Nerves can be Afferent - They carry info from the body "to the brain" as in sensory nerves. ( I have no tip to remember afferent. I just think of Efferent = effort and, therefore, Afferent is the opposite.)
Mild Optic Nerve Pallor - (to a neurologist the ON is the optic nerve) Paleness indicates atrophy. It is pale from losing nerve fibers.
Quix
Nerves can be Efferent - The nerves carry signals "to" the part of the body that needs to be making the "effort". The best example of this is motor nerves, which are efferent.
Nerves can be Afferent - They carry info from the body "to the brain" as in sensory nerves. ( I have no tip to remember afferent. I just think of Efferent = effort and, therefore, Afferent is the opposite.)
Mild Optic Nerve Pallor - (to a neurologist the ON is the optic nerve) Paleness indicates atrophy. It is pale from losing nerve fibers.
Quix
Kathy - next time I tell you to get on antibiotics NOW, will you listen? (Sheeesh! Can't get no repsect!)
To all - ALL INFECTIONS MUST BE TREATED - NO EXCEPTIONS. MS IS ONE CONDITION TO BE MORE LIBERAL WITH ANTIBIOTICS - NOT LESS!
Quix, MD - Out!
To all - ALL INFECTIONS MUST BE TREATED - NO EXCEPTIONS. MS IS ONE CONDITION TO BE MORE LIBERAL WITH ANTIBIOTICS - NOT LESS!
Quix, MD - Out!
Forgot to mention that I did talk to Nurse K on my way out, gave her the latest communication from my insurance company, and she agreed to see what she could do to try once again to get approval for my Provigil.
Well, I'm back! I've eaten lunch and a little chocolate, and am treating myself to a visit with my online friends! I just wanted to get home; it took a long time waiting in the lab for my blood draw, while needing to give my urine sample asap!
First, let me say I love my neurologist; the guy diagnosed me, believes in me, cares about me and my future as well as many, many other people. He is awesome.
That being said, he kind of told me off, in a pretty caring way. I got in trouble for not getting on antibiotics right away when I had that infection in my toe, and wouldn't listen to any explanations or excuses. I also got in trouble for stopping taking Tegretol without contacting them first, and for having forgotten to tell his assistant that I had stopped when he did my intake.
He didn't think my palpitations and increased heart rate with exertion were from medications; he suggested anxiety.(grrr) My only other gripe is that he cuts me off before I can tell the whole story; like I stopped taking the tegretol after a few weeks of the palpitations, then four days of really bad headaches (so bad I couldn't get my head comfortable on a pillow), and a weird rash thing under my eye. I see my PCP tomorrow, so I can cover stuff I couldn't with my neuro.
I was asked to please call my gastroenterologist and insist or encourage her to do my follow-up colonoscopy in a year instead of three (my gastro told me Friday that she would do 3 instead of the 1 she originally said), and gave me colon cancer stats.
He told me to make use of the care that is out there for me, that's what they're all there for, working to keep me healthy. Then it was off to the exam room.
I did slip in the fact that I had searched for 20 months for him, the doctor that believed that I had neurological issues. He smiled.
So, I have significant loss of sensation in a stocking distribution. The rest of my exam was pretty much the same as last visit, which I guess means I still have a mild afferent pupillary defect in my left eye, with mild ON pallor. I didn't ask what that meant.
I didn't have a chance to ask much; we went out to schedule my 4 month follow-up.
I asked if I had a firm diagnosis, and he said yes, I wouldn't be on Avonex if I didn't. Good enough for me; I don't need to know the location of my lesions.
I asked about the nerve pain in my leg from my waist to my foot, and he said it was directily caused by my MS. I said, "then I don't have peripheral neuropathy?" (only I forgot the word peripheral and he had to fill it in), and he said, no, I have no sign of any peripheral neuropathy at all.
I asked when he would want to do another MRI, and he replied not until I'd been on Avonex a while longer.
All in all, I got the most important questions answered, and learned more that I hadn't thought to ask about. I do like him, and trust that we'll build a good relationship, and I can call with questions or concerns, instead of waiting for my appointment and getting in trouble for waiting or trying to take care of myself!
It kind of floored me, though. Me, who has had 3 months of diagnosis, 20 months of being so sure that I battled my way through 3 other neuros, several specialists and bundles of tests, looking for the answer that I was so sure of.
It floored me that my leg pain is from my MS. For years before all this, I've been searching for answers about it, and was told so many different things; it's from overweight, from my hypermobile SI joint; I've had SI joint injections, nerve blocks, lost 100 pounds, nothing worked.
Its from a disc protrusion. That the protrusion is too slight to cause the symptoms I describe. Suggestions that I'm exaggerating the pain.
I went through the painful discography that showed all the annular tears throughout my lumbar spine; could cause pain. Can't kind the kind of pain I describe.
Today, boom, its from my MS. My sensation in that foot is decreased. This is really real. I can't let an infection in that toe get only my home remedies for attention; I could get cellulitis, a blood infection (Dr. C. scared me good!). This is progressing.
THIS IS PROGRESSING!!!
I want to e-mail my previous neuro, not to tell her off, just to make her stop and think. Simply "Kathy was diagnosed with RRMS on October 19, 2009, and started treatment with Avonex on November 2, 2009". I doubt it would do any good, so I most likely won't do it. My treatment was already delayed for years.
Ahhhh. It felt good to let that all out.
Thanks for listening, and being here.
Hugs to all,
Kathy
First, let me say I love my neurologist; the guy diagnosed me, believes in me, cares about me and my future as well as many, many other people. He is awesome.
That being said, he kind of told me off, in a pretty caring way. I got in trouble for not getting on antibiotics right away when I had that infection in my toe, and wouldn't listen to any explanations or excuses. I also got in trouble for stopping taking Tegretol without contacting them first, and for having forgotten to tell his assistant that I had stopped when he did my intake.
He didn't think my palpitations and increased heart rate with exertion were from medications; he suggested anxiety.(grrr) My only other gripe is that he cuts me off before I can tell the whole story; like I stopped taking the tegretol after a few weeks of the palpitations, then four days of really bad headaches (so bad I couldn't get my head comfortable on a pillow), and a weird rash thing under my eye. I see my PCP tomorrow, so I can cover stuff I couldn't with my neuro.
I was asked to please call my gastroenterologist and insist or encourage her to do my follow-up colonoscopy in a year instead of three (my gastro told me Friday that she would do 3 instead of the 1 she originally said), and gave me colon cancer stats.
He told me to make use of the care that is out there for me, that's what they're all there for, working to keep me healthy. Then it was off to the exam room.
I did slip in the fact that I had searched for 20 months for him, the doctor that believed that I had neurological issues. He smiled.
So, I have significant loss of sensation in a stocking distribution. The rest of my exam was pretty much the same as last visit, which I guess means I still have a mild afferent pupillary defect in my left eye, with mild ON pallor. I didn't ask what that meant.
I didn't have a chance to ask much; we went out to schedule my 4 month follow-up.
I asked if I had a firm diagnosis, and he said yes, I wouldn't be on Avonex if I didn't. Good enough for me; I don't need to know the location of my lesions.
I asked about the nerve pain in my leg from my waist to my foot, and he said it was directily caused by my MS. I said, "then I don't have peripheral neuropathy?" (only I forgot the word peripheral and he had to fill it in), and he said, no, I have no sign of any peripheral neuropathy at all.
I asked when he would want to do another MRI, and he replied not until I'd been on Avonex a while longer.
All in all, I got the most important questions answered, and learned more that I hadn't thought to ask about. I do like him, and trust that we'll build a good relationship, and I can call with questions or concerns, instead of waiting for my appointment and getting in trouble for waiting or trying to take care of myself!
It kind of floored me, though. Me, who has had 3 months of diagnosis, 20 months of being so sure that I battled my way through 3 other neuros, several specialists and bundles of tests, looking for the answer that I was so sure of.
It floored me that my leg pain is from my MS. For years before all this, I've been searching for answers about it, and was told so many different things; it's from overweight, from my hypermobile SI joint; I've had SI joint injections, nerve blocks, lost 100 pounds, nothing worked.
Its from a disc protrusion. That the protrusion is too slight to cause the symptoms I describe. Suggestions that I'm exaggerating the pain.
I went through the painful discography that showed all the annular tears throughout my lumbar spine; could cause pain. Can't kind the kind of pain I describe.
Today, boom, its from my MS. My sensation in that foot is decreased. This is really real. I can't let an infection in that toe get only my home remedies for attention; I could get cellulitis, a blood infection (Dr. C. scared me good!). This is progressing.
THIS IS PROGRESSING!!!
I want to e-mail my previous neuro, not to tell her off, just to make her stop and think. Simply "Kathy was diagnosed with RRMS on October 19, 2009, and started treatment with Avonex on November 2, 2009". I doubt it would do any good, so I most likely won't do it. My treatment was already delayed for years.
Ahhhh. It felt good to let that all out.
Thanks for listening, and being here.
Hugs to all,
Kathy
Sorry I didn't get up in time to see this, lol. Side effect of working nights. I hope things went okay, and you had a great lunch. Of course we will all be looking to see how your appt. went.
Hugs
Maggie
Hugs
Maggie
Kathy,
I'm coming to this late - you have probably already left for the doctor's so I'll wait to see you on the other side. I hope you come away with the feeling of being in good hands.
be well,
Lu
I'm coming to this late - you have probably already left for the doctor's so I'll wait to see you on the other side. I hope you come away with the feeling of being in good hands.
be well,
Lu
To Kath: Dr. will ask you what is going on, so may be best to leave the "why did you dx me" one off your list. ha/ha...Hey, just giving it to your straight-sister, you'd do the same for me - right!
Definitely talk about what you need w/the provigil, that is important. And on exam, describe the nerve pain and go w/the suggestion you get. You can always follow that up with "why does that happen." I want you to smile right now! The, tell the Dr. how the injections been going, and then some of the things bothering you right now.
To Fluffy: If Mama is still fretting - rat her out and tell us quickly!
All is going to be ok. See you on the flip side!
-shell
Definitely talk about what you need w/the provigil, that is important. And on exam, describe the nerve pain and go w/the suggestion you get. You can always follow that up with "why does that happen." I want you to smile right now! The, tell the Dr. how the injections been going, and then some of the things bothering you right now.
To Fluffy: If Mama is still fretting - rat her out and tell us quickly!
All is going to be ok. See you on the flip side!
-shell
Well, Kathy, even if you don't find anyone with whom to share lunch, you know you have a gaggle of friends here with whom to share thoughts & impressions when it's all over, and who can help with celebration or solace, as needed. You will be in my prayers.
Thank you for your calming comments! I'm sitting here jotting down a question list, with room to write in answers, with reminder words and ??s, like "EMG??".
I had a list of four questions at my last appointment, and he seemed pleased by the good ones
Things have been overwhelming me lately and I'm not as prepared as I planned to be. I haven't been keeping up my Timeline, so I'll take my little datebook to remind myself of when my symptoms were acting up. Don't want to overload him with info, but want him to have as much as he needs.
I'm hoping he'll do a thorough neuro exam, so there won't be lots of time for questions. I'll have to focus on nerve pain and drug side effects, the most bothersome, first, and then my future, second. Future as in how set my diagnosis is.
I'd like to know when I'll have a follow-up MRI; my last was 4/30/09 on a 3T machine, but the spinal film quality wasn't the best.
His nurse has been following up on the Provigil prior authorization denial, appeal denial, etc, but someone dropped the ball and I haven't been able to follow up because I don't have all the information. I can ask if Nurse K has time to see me, or leave her a note asking her to give me a call.
I'll see if any friends are available for lunch today; if not, I'll treat myself to something special.
Am taking deep breaths....
Kathy
I had a list of four questions at my last appointment, and he seemed pleased by the good ones
Things have been overwhelming me lately and I'm not as prepared as I planned to be. I haven't been keeping up my Timeline, so I'll take my little datebook to remind myself of when my symptoms were acting up. Don't want to overload him with info, but want him to have as much as he needs.
I'm hoping he'll do a thorough neuro exam, so there won't be lots of time for questions. I'll have to focus on nerve pain and drug side effects, the most bothersome, first, and then my future, second. Future as in how set my diagnosis is.
I'd like to know when I'll have a follow-up MRI; my last was 4/30/09 on a 3T machine, but the spinal film quality wasn't the best.
His nurse has been following up on the Provigil prior authorization denial, appeal denial, etc, but someone dropped the ball and I haven't been able to follow up because I don't have all the information. I can ask if Nurse K has time to see me, or leave her a note asking her to give me a call.
I'll see if any friends are available for lunch today; if not, I'll treat myself to something special.
Am taking deep breaths....
Kathy
Hey Kathy. Take a deep breath and R-E-L-A-X.
It sounds like in writing this you got your thoughts together pretty well. I'd copy and paste your own post into a word program or email to yourself, print, and take it along with you to the doc. Blame cog fog if you have to :)
You might want to take a few minutes to group and evaluate your symptoms since your last visit. I would assume the doctor wants to know about improvements or progressions.
Don't be afraid to pull your question list out during the appointment. You may want to number the items by priority so you focus on the issues most urgent to YOU first. A doctor will assume the thing you mention first is top priority. Sometimes they don't hear anything that follows. And you just never know at what point it will be implied or stated that you've reached your question limit for the day. Hope you don't run into that though.
Not every question may need to be asked or answered today. You'll be learning and living MS from here on out. There will always be a next visit for left-over questions. Even so, it's great that you're taking steps to get the most productive visit possible.
Thanks for this heads-up that long awaited appointments creep up on us all of a sudden. I'd better start preparing in earnest for my February 9th MS neuro meet up.
One more suggestion. Call a friend and pick out a favorite place to have a relaxing lunch after your appointment. I'll be thinking of you. Hope to hear a good report later today.
Mary
It sounds like in writing this you got your thoughts together pretty well. I'd copy and paste your own post into a word program or email to yourself, print, and take it along with you to the doc. Blame cog fog if you have to :)
You might want to take a few minutes to group and evaluate your symptoms since your last visit. I would assume the doctor wants to know about improvements or progressions.
Don't be afraid to pull your question list out during the appointment. You may want to number the items by priority so you focus on the issues most urgent to YOU first. A doctor will assume the thing you mention first is top priority. Sometimes they don't hear anything that follows. And you just never know at what point it will be implied or stated that you've reached your question limit for the day. Hope you don't run into that though.
Not every question may need to be asked or answered today. You'll be learning and living MS from here on out. There will always be a next visit for left-over questions. Even so, it's great that you're taking steps to get the most productive visit possible.
Thanks for this heads-up that long awaited appointments creep up on us all of a sudden. I'd better start preparing in earnest for my February 9th MS neuro meet up.
One more suggestion. Call a friend and pick out a favorite place to have a relaxing lunch after your appointment. I'll be thinking of you. Hope to hear a good report later today.
Mary
Kathy,
Take a deep breath. It sounds like you have lots that you want to ask so write the questions that you have posted here down and ask them.
We never remember to ask everything but if you get the answers to these questions today, you will feel much better after your visit.
You can always call the office in a few days and say that you forgot to ask a certain thing and request that someone call you with the answer.
Good luck and remember - just breath
Hugs,
Erin :)
Take a deep breath. It sounds like you have lots that you want to ask so write the questions that you have posted here down and ask them.
We never remember to ask everything but if you get the answers to these questions today, you will feel much better after your visit.
You can always call the office in a few days and say that you forgot to ask a certain thing and request that someone call you with the answer.
Good luck and remember - just breath
Hugs,
Erin :)
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