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How do I Handle this Ignorant Doctor?
I haven't posted much lately and when I have it is generally about everyday stuff and not complaining, but this time I need to vent and hope you guys don't mind. My vent is regarding an appointment I had last Friday with an ophthamologist for a 3-month f/u after startng on Gilenya. Gilenya can cause macular edema 3-4 months into taking the drug, so that's the reason for the f/u.
This was my second visit with this lady ophth the first being my pre-Gilenya screening. I just happened to be her first patient to come in for the screening for this drug.
She comes into the exam room and asks how I'm doing on the drug. I told her the only issue I was having was hair loss. She said she didn't see any sign I was having hair loss. Whatever, I ignored it. Then she asked about vision changes. I told her that my vision was blurrier than normal. I've had vision issues my whole life so when I say there is a change I know what I'm talking about. She did a 2 minute exam and said that my eyes were fine no edema. I again told her that my vision was blurrier than normal and she just brushed it off. She said "it's not the drug causing it. It may be your age". I didn't want to let it go, but she didn't want to discuss it any further so I didn't push her. She did say that if I complained any more about the vision being blurry that she'll get me taken of the drug. The message I got from the way she said it was "don't complain or else..."
She then started telling me that she now has 20 MS patients coming in for exams since they are going on Gilenya too. She looks at me and says "they are all so young, you can't even tell they have MS. I don't have any patients your age. How long ago were you diagnosed? 3 years ago? At your age you were diagnosed?" There again she mentions the age thing. Geez...Here I am an older woman having been diagnosed in my 40s, using a cane, seemed hard for her to believe as she seemed so perplexted like this is a young person's disease only.
I don't know if I'm being oversensetive or what, but I came away from that appointment feeling that I didn't get my concerns about my vision taken seriously. IN fact, I felt she just brushed them off as old age. Then the age thing came around again when she questioned my diagnosis at a later age than the other patients who were coming in. What the heck is this? If you get older are your health issues just ignored or are seen as less important than if seen in a younger patient. Why did she even bring this up in the first place?
But here's the clincher...She told me quite smugly that Novartis contacted her asking about her 20 MS patients and how we are doing on the drug. She said she didn't know how they found out about her. That's an interesting question. How DID they find her and contact her out of the blue? Can they do that? Maybe I don't want my information being given out to them. Wonder if there is a HIPPA issue there.
Let me know what you guys think. Am I over-reacting or this is just an ignorant doctor who is not worth my time or money? I have been more sensative than normal lately. Thanks for the support. Now I am going to go get some cheese for my "whine". :)
Julie
This was my second visit with this lady ophth the first being my pre-Gilenya screening. I just happened to be her first patient to come in for the screening for this drug.
She comes into the exam room and asks how I'm doing on the drug. I told her the only issue I was having was hair loss. She said she didn't see any sign I was having hair loss. Whatever, I ignored it. Then she asked about vision changes. I told her that my vision was blurrier than normal. I've had vision issues my whole life so when I say there is a change I know what I'm talking about. She did a 2 minute exam and said that my eyes were fine no edema. I again told her that my vision was blurrier than normal and she just brushed it off. She said "it's not the drug causing it. It may be your age". I didn't want to let it go, but she didn't want to discuss it any further so I didn't push her. She did say that if I complained any more about the vision being blurry that she'll get me taken of the drug. The message I got from the way she said it was "don't complain or else..."
She then started telling me that she now has 20 MS patients coming in for exams since they are going on Gilenya too. She looks at me and says "they are all so young, you can't even tell they have MS. I don't have any patients your age. How long ago were you diagnosed? 3 years ago? At your age you were diagnosed?" There again she mentions the age thing. Geez...Here I am an older woman having been diagnosed in my 40s, using a cane, seemed hard for her to believe as she seemed so perplexted like this is a young person's disease only.
I don't know if I'm being oversensetive or what, but I came away from that appointment feeling that I didn't get my concerns about my vision taken seriously. IN fact, I felt she just brushed them off as old age. Then the age thing came around again when she questioned my diagnosis at a later age than the other patients who were coming in. What the heck is this? If you get older are your health issues just ignored or are seen as less important than if seen in a younger patient. Why did she even bring this up in the first place?
But here's the clincher...She told me quite smugly that Novartis contacted her asking about her 20 MS patients and how we are doing on the drug. She said she didn't know how they found out about her. That's an interesting question. How DID they find her and contact her out of the blue? Can they do that? Maybe I don't want my information being given out to them. Wonder if there is a HIPPA issue there.
Let me know what you guys think. Am I over-reacting or this is just an ignorant doctor who is not worth my time or money? I have been more sensative than normal lately. Thanks for the support. Now I am going to go get some cheese for my "whine". :)
Julie
Mulling..............but still upset..............going to my corner to contemplate a solution for my friend.......
Julie,
I am sorry things are so hard right now for you. You know I am on your side.
Alex
Alex, that is a very interesting perspective. I think we have talked about this a few time on how hard it is to start a group. Ren told me the same thing as she wanted to start a group in her area and saw all the barriers.
I think you are right about the younger MSers who are not yet feeling the full brunt of MS may have a hard time seeing those who are more visibly affected by MS. I can understand that for sure. We tend to not want to see what may possibly happen to us down the road. It is truly scary.
Thanks for sharing your thoughts and experiences.
Juile
I think you are right about the younger MSers who are not yet feeling the full brunt of MS may have a hard time seeing those who are more visibly affected by MS. I can understand that for sure. We tend to not want to see what may possibly happen to us down the road. It is truly scary.
Thanks for sharing your thoughts and experiences.
Juile
The NMSS has a no discrimination clause. These titles of groups say what the group focus is. Julie or anyone can go to a young people's group. Some chapter's are more organized than others. The chapter does not start or run the groups they are a resource and there for guidance for the groups.
The groups are set up by individual volunteers who decide to form a group. This is not an easy task. Anyone can form a group. There are many requirements and responsibilities. It is hard to get a group started and keep it going over time. Just finding a location is tricky. Two of our local groups lost their locations recently and it was not easy to find a new location which was free, public, and handicapped accessible.
It takes commitment of time, training, physically getting to meetings. Perhaps the younger group leaders have more stamina for such a task.
Anyone can start a new group by contacting the local chapter and finding out the guidelines.
Groups can be changing all the time in size and dynamic. It is much like the forum but with different guidelines. A group leader may open a meeting and not be sure if anyone will show up.
People tend to like to be with people who are similar. Even on the forum we tend to form groups. The main thing is to just go to a meeting and stick with it awhile. Once people get to know each other the differences fade away. I have a hard time getting accepted because my MS is not apparent. People even get jealous of me and sometimes hostile. Once they get to know me this goes away. I on the other hand was afraid of the really disabled members in the beginning because I thought "Is this my future?". Heck I have nothing in common with pregnant women or young mothers having never been one. I have become an active member of two different groups which are different.
Oh the people on the phones may not even be in your area they could be from national reading the information.
Alex
The groups are set up by individual volunteers who decide to form a group. This is not an easy task. Anyone can form a group. There are many requirements and responsibilities. It is hard to get a group started and keep it going over time. Just finding a location is tricky. Two of our local groups lost their locations recently and it was not easy to find a new location which was free, public, and handicapped accessible.
It takes commitment of time, training, physically getting to meetings. Perhaps the younger group leaders have more stamina for such a task.
Anyone can start a new group by contacting the local chapter and finding out the guidelines.
Groups can be changing all the time in size and dynamic. It is much like the forum but with different guidelines. A group leader may open a meeting and not be sure if anyone will show up.
People tend to like to be with people who are similar. Even on the forum we tend to form groups. The main thing is to just go to a meeting and stick with it awhile. Once people get to know each other the differences fade away. I have a hard time getting accepted because my MS is not apparent. People even get jealous of me and sometimes hostile. Once they get to know me this goes away. I on the other hand was afraid of the really disabled members in the beginning because I thought "Is this my future?". Heck I have nothing in common with pregnant women or young mothers having never been one. I have become an active member of two different groups which are different.
Oh the people on the phones may not even be in your area they could be from national reading the information.
Alex
Oh, come on, I DARE you to write the NATIONAL Chapter about this............if not, I will cut/paste and do it for you......
This is ridiculous and so primitive thinking on their part..........take names, kick butt, hold your head up.............
This is ridiculous and so primitive thinking on their part..........take names, kick butt, hold your head up.............
You guys are truly the best. The feedback is just wonderful and something we can all learn from - young and older. Please know that my comments are not meant to create a barrier between those of us with MS who are older versus the younger MSers. Quite the opposite. I hope we can build a bridge between our respective life stages. We may be at different stages in our lives, but one thing we all have in common is this MSerable disease and what do they say about strength in numbers. :) With that said, I've added a few more comments below.
Just an update on the ingorant doctor: I called that doctors office today and told the receptionist that I wanted to canel an appointment in September- yep 3 months away. She asked if I wanted to reschedule and I simply said "no thank you" and left it at that. We know doctor's don't care if we cancel our appointments or even when we never show up again. It's just one less patient and chart they have to deal with. Now that lady only has 19 MS patients taking gilenya instead of 20. I'm taking my healthcare elsewhere and find another doctor soon. Thankfully I live in a place where I have choices.
One thing came to mind when I was reading your comments about the age limitations for the local groups. This information was given to me by the local NMSS National Capital Region Office and not the group leaders. I asked the NMSS office on seperate calls talking to different people if I'd get kicked out if I showed up at one of their meetings and the lady said no, but that the group members preference is that they keep the age limitation in effect. It was highly suggested that I not try to bust their party. That was so heartbreaking to hear. I saw this at one of the very few NMSS sponsored activities a year ago when everyone showed up and the younger MSers sat on one side of the room and the older wheelchair/walker/cane MSers sat on the other side. It was the weirdest thing I ever experienced. Oh, and the subject was "MS in Pregnancy through Menapause". They talked a lot about pregnancy and when it came to menapause, well, that discussion took about 5 minutes where they said they don't know much because there doesn't appear to be any research interest. The only thing those of us who came for that part of the discussion got was a free brunch. :)
So, here are a couple of good discussions that can be posted, i.e., MS and Menapause and Age Discrimination for MSers both inside and outside the MS community. Hmmm...Anyone gave for such discussions?
Thanks again for your ideas, empathy and overall feedback. It is good to have a place like this to discuss subjects that we may not feel comfortable doing elsewhere.
Have a good Friday evening everyone.
-Julie
Just an update on the ingorant doctor: I called that doctors office today and told the receptionist that I wanted to canel an appointment in September- yep 3 months away. She asked if I wanted to reschedule and I simply said "no thank you" and left it at that. We know doctor's don't care if we cancel our appointments or even when we never show up again. It's just one less patient and chart they have to deal with. Now that lady only has 19 MS patients taking gilenya instead of 20. I'm taking my healthcare elsewhere and find another doctor soon. Thankfully I live in a place where I have choices.
One thing came to mind when I was reading your comments about the age limitations for the local groups. This information was given to me by the local NMSS National Capital Region Office and not the group leaders. I asked the NMSS office on seperate calls talking to different people if I'd get kicked out if I showed up at one of their meetings and the lady said no, but that the group members preference is that they keep the age limitation in effect. It was highly suggested that I not try to bust their party. That was so heartbreaking to hear. I saw this at one of the very few NMSS sponsored activities a year ago when everyone showed up and the younger MSers sat on one side of the room and the older wheelchair/walker/cane MSers sat on the other side. It was the weirdest thing I ever experienced. Oh, and the subject was "MS in Pregnancy through Menapause". They talked a lot about pregnancy and when it came to menapause, well, that discussion took about 5 minutes where they said they don't know much because there doesn't appear to be any research interest. The only thing those of us who came for that part of the discussion got was a free brunch. :)
So, here are a couple of good discussions that can be posted, i.e., MS and Menapause and Age Discrimination for MSers both inside and outside the MS community. Hmmm...Anyone gave for such discussions?
Thanks again for your ideas, empathy and overall feedback. It is good to have a place like this to discuss subjects that we may not feel comfortable doing elsewhere.
Have a good Friday evening everyone.
-Julie
Hi , poor you. I can so empathize with you about the age thing. I am no almost 53, dx. at 51 and we have been doing the same thing. YOUR AGE MAM !!! You don't look like you have MS, though I too walk with a cane, and just don't go out on a bad day. I still put on make up, and try to look nice, and we are supposed dto walk around looking like we are really really sick, in order to get any attention at all.
I am so sorry that she was so rude to you, it is hard enough talking about this, without people belittling us about our age. I am going through the same things too, cause they put me on hormones, and it is no official if the heat I am feeling is MS or "HOT FLASHES", though I did not know that "HOT FLASHES can last for days....LOL
So, chin up, and try to move on. Do you have another eye Dr. you could go to ? It is such a good thing that we don't have to see these people every day huh???
Hoping you are feeling better today..... join the "OLD FOLKS" club, we would LOVE to have ya....
*HUGS*
CANDY
I am so sorry that she was so rude to you, it is hard enough talking about this, without people belittling us about our age. I am going through the same things too, cause they put me on hormones, and it is no official if the heat I am feeling is MS or "HOT FLASHES", though I did not know that "HOT FLASHES can last for days....LOL
So, chin up, and try to move on. Do you have another eye Dr. you could go to ? It is such a good thing that we don't have to see these people every day huh???
Hoping you are feeling better today..... join the "OLD FOLKS" club, we would LOVE to have ya....
*HUGS*
CANDY
Since when is 40 old??????? I also have no available MS support groups in my area, unfortunately, but not because there is age discrimination. I wonder if the local NMSS office knows of this "cut-off" that seems grossly unfair.
I am like Karen ...I am ancient. Who is supposed to be there for us "old folks"?
Ren
I am like Karen ...I am ancient. Who is supposed to be there for us "old folks"?
Ren
WHAT?!?! There is an MS support group that excludes older folks with MS? That is one of the most ridiculous things I have ever heard.
If 40 is "older", I am ancient.
What makes any support group great is a variety of people of all ages, race, etc who can support and relate to each other, brought together by one commonality.
Yes, Sarah. This is very strange.
If 40 is "older", I am ancient.
What makes any support group great is a variety of people of all ages, race, etc who can support and relate to each other, brought together by one commonality.
Yes, Sarah. This is very strange.
Gee Sarahsmom46, that certainly smacks of age discrimination. Wonder if your MS chapter has ever had it bluntly put to them THAT way...........
I've been to DC metro area and am SURE there are MS people over 40 out here!!!
I think it is also a general thought; I've had friends say "oh you can't possibly have MS, you are too old".........tell my body that! LOL
I've been to DC metro area and am SURE there are MS people over 40 out here!!!
I think it is also a general thought; I've had friends say "oh you can't possibly have MS, you are too old".........tell my body that! LOL
Speaking on age and MS...We don't have many groups in the DC metro area for MSers except for younger people with MS. There is a cut off age according to the local NMSS of 40. Since there are no groups as of yet for us "older" folks, I don't have any group I can fit into. Maybe I can start a group, but doesn't it seem strange that older MSers are not recommended in attending the yournger MS support groups? I guess there is a division within our own community. I sure hope those of you in active MS communities are experiencing this.
Older? Is that the "pat" answer for anyone that doesn't fit in the cute little square peg hole?
I actually walked out on a neuro for telling me I was too old to have MS (my husband's cousin was FIRST DX in her 70's.............with eye problems.......so go figure...........'
Do they figure we are not worth taking the time to treat (throw the baby out with the bath water?); the new neuro that I am waiting to see, that was the FIRST thing I told him when I wrote him........"I am elderly" and he still wants to see me..........
Is it possible the pharmacy provides the drug companies with the names of the doc's because I get literature from the drug companies after I fill new prescriptions, just wondered?
Good luck! Maybe you should suggest you are going to tape the conversations if she isn't going to address your concerns!
I actually walked out on a neuro for telling me I was too old to have MS (my husband's cousin was FIRST DX in her 70's.............with eye problems.......so go figure...........'
Do they figure we are not worth taking the time to treat (throw the baby out with the bath water?); the new neuro that I am waiting to see, that was the FIRST thing I told him when I wrote him........"I am elderly" and he still wants to see me..........
Is it possible the pharmacy provides the drug companies with the names of the doc's because I get literature from the drug companies after I fill new prescriptions, just wondered?
Good luck! Maybe you should suggest you are going to tape the conversations if she isn't going to address your concerns!
i agree with the others- im older too- lol but not deaD!! HA!! I DONT KNOW- YOU OR NO ONE SHOULD HAVE TO PUT UP WITH THAT!! LOL sorry i hit the caps!
hugs
hugs
Hi Sarahsmom46, Sorry about your appointment. Med School curriculum needs to be revised ASAP because there are TOO many doctors out there like the one you are describing, and even much worse! I've also had the "age" thing be an issue at appointments, but the opposite ("you're too young!"). I've also had the "don't complain or else" scare tactic used on me on more than one occasion, and at first it really got to me, but I got used to it.
How can she tell you that she doesn't see any sign of hair loss? Unless she took a picture of your hair before you took the medication, or she has exceptional memory and remembers exactly how your hair was before, then she has no basis for comparison. And how can she just brush off blurriness? That is a big symptom.
Just ignore her non-help and find a new doctor who will listen to you and help you. Good luck.
How can she tell you that she doesn't see any sign of hair loss? Unless she took a picture of your hair before you took the medication, or she has exceptional memory and remembers exactly how your hair was before, then she has no basis for comparison. And how can she just brush off blurriness? That is a big symptom.
Just ignore her non-help and find a new doctor who will listen to you and help you. Good luck.
I agree with all the indignant responses here, and I have one more:
Older? OLDER???
You're still in your 40s, right? Does that woman not know that many MSers are diagnosed in their 50s and 60s? A few even later? And to make you feel you are doddering is outrageous!
What an ignorant, smug dunce.
ess (who is REALLY old)
Older? OLDER???
You're still in your 40s, right? Does that woman not know that many MSers are diagnosed in their 50s and 60s? A few even later? And to make you feel you are doddering is outrageous!
What an ignorant, smug dunce.
ess (who is REALLY old)
You all gave such great feedback, thanks so much.
Michelle - Thanks for telling me that the OCT needs to be done each visit. She did it the 1st visit and said she'd do it next time (3 months from now).
Dennis - Yep, I'm going to do my very best to run as fast as I can from this doc. Do you think we can roast her at the Friday Nite Weenie Roast? I know we reserve that for neuro'sb, but since she thinks she knows everything, she should qualify. :)
Karen - Oh I hoped and prayed that my comment about older people not getting the best care wasn't true. Well, I'm getting into that age group so will start soon finding out if it is true.
Kat - thanks for the reassurance about how the drug company found this lady. I had a sneaky suspicion that she went out to find them saying she's getting all these patients now and maybe they can work out a financial deal where she supplies them information. She seems to be on the look out for extra money. Hee, hee...
I have decided to get another ophthamologist. When things like this happen, we might want to lash out towards the doctor when they are this ignorant, but I know that won't accomplish anything so that's why I turned to you guys. You all pretty much said to get someone else and that is the advice I would have given anyone else who asked this. I needed to hear that.
I was thinking about your responses yesterday and one more thing came to mind that really solidified my need to give her the boot. At my first visit, she was trying to sell me on this or that type of procedure. She said she has a room in her office dedicated to eye surgery, probably not the big deal stuff but never the less - surgery. I almost felt like I was at a car dealership getting my car checked out and having the salesperson trying to get me to buy a new car. What a trip this lady was and I didn't even realize it.
Thanks again you guys. You are all the best.
Michelle - Thanks for telling me that the OCT needs to be done each visit. She did it the 1st visit and said she'd do it next time (3 months from now).
Dennis - Yep, I'm going to do my very best to run as fast as I can from this doc. Do you think we can roast her at the Friday Nite Weenie Roast? I know we reserve that for neuro'sb, but since she thinks she knows everything, she should qualify. :)
Karen - Oh I hoped and prayed that my comment about older people not getting the best care wasn't true. Well, I'm getting into that age group so will start soon finding out if it is true.
Kat - thanks for the reassurance about how the drug company found this lady. I had a sneaky suspicion that she went out to find them saying she's getting all these patients now and maybe they can work out a financial deal where she supplies them information. She seems to be on the look out for extra money. Hee, hee...
I have decided to get another ophthamologist. When things like this happen, we might want to lash out towards the doctor when they are this ignorant, but I know that won't accomplish anything so that's why I turned to you guys. You all pretty much said to get someone else and that is the advice I would have given anyone else who asked this. I needed to hear that.
I was thinking about your responses yesterday and one more thing came to mind that really solidified my need to give her the boot. At my first visit, she was trying to sell me on this or that type of procedure. She said she has a room in her office dedicated to eye surgery, probably not the big deal stuff but never the less - surgery. I almost felt like I was at a car dealership getting my car checked out and having the salesperson trying to get me to buy a new car. What a trip this lady was and I didn't even realize it.
Thanks again you guys. You are all the best.
I would call your MS neuro and let them know about this Ophthalmologist. I "assume" you were referred to her through your neuro?
The main reason you are supposed to see her, (as far as Gilenya, and what the "rules" are), is to have an OCT at EVERY visit. That was my understanding per my nuero when Gilenya was being offered to me. The MS centers protocol for Gilenya, was ALL patients on Gilenya must see the same ophthalmologist for the exam/OCT. She is a neuro-ophthal. and she was "appointed" from the Cleveland Clinic to be the only doc the Mellon Center refers to as far as their Gilenya patients. OCT is the only way to detect small changes in the Macula, from the swelling.
So, Julie, I wouldn't go back,. and I would call your neuro and let them know how the exam went . and see who else you can go to.
I am POSITIVE an OCT is supposed to be done at every eye exam. Novartis knows about the Neuro-Opth. at the Cleveland Clinic, because she is the only one you see if you are a pt. there.
That is why I assumed you were referred to her through your nuero. Anyway, just my 2 cents. She certainly doesn't seem like the kind of doc I would want to go back to.
Sorry you had a bad experience with this doc. She sounds stupido...(I am not sure that is really a word, but I like it! :))
Hugs to you Julie,
Michelle
The main reason you are supposed to see her, (as far as Gilenya, and what the "rules" are), is to have an OCT at EVERY visit. That was my understanding per my nuero when Gilenya was being offered to me. The MS centers protocol for Gilenya, was ALL patients on Gilenya must see the same ophthalmologist for the exam/OCT. She is a neuro-ophthal. and she was "appointed" from the Cleveland Clinic to be the only doc the Mellon Center refers to as far as their Gilenya patients. OCT is the only way to detect small changes in the Macula, from the swelling.
So, Julie, I wouldn't go back,. and I would call your neuro and let them know how the exam went . and see who else you can go to.
I am POSITIVE an OCT is supposed to be done at every eye exam. Novartis knows about the Neuro-Opth. at the Cleveland Clinic, because she is the only one you see if you are a pt. there.
That is why I assumed you were referred to her through your nuero. Anyway, just my 2 cents. She certainly doesn't seem like the kind of doc I would want to go back to.
Sorry you had a bad experience with this doc. She sounds stupido...(I am not sure that is really a word, but I like it! :))
Hugs to you Julie,
Michelle
Julie, there's not much I can add of substance to what was already written here. With your vision history you definitely need to run somewhere else and leave this woman in the dust. We have enough challenges facing us to have even more thrown at us by the very people who are supposed to help us.
hugs, Lu
hugs, Lu
I agree with Karen, "Run don't walk for the nearest exit with this doctor."
Dennis
Dennis
Bottom line is that you did not your concerns addressed. Gilenya or not!
My take is that she is DISMISSIVE of anything you have to say.
When you sign up for Gilenya do they ask you who your opthamologist will be? Gilenya has an interest in patient compliance and that they be evaluated as recommended:
"If patients report visual disturbances at any time while taking GILENYA, additional ophthalmologic evaluation should be undertaken."
I did a google search to find how they diagnose macular edema. It does not sound like she did much more than peek in your eyes?:
"Macular edema is not often diagnosed in a routine eye exam. An ophthamologist should be able to diagnose macular edema by putting a dye called fluorescein in through the veins of the arm to study the blood vessels. A fluoroscein angiogram provides insight into the circulatory system of the eye through the use of a camera that can photograph the eye."
"It is not possible to diagnose macular oedema without the help of a slit lamp. A clue might be the loss of the foveal reflex compared to the fellow eye. In wet AMD, there may also be an associated bleed, seen as a well-demarcated deep red patch over the macular area. Even if the view is limited, the history and an abnormal Amsler grid will raise suspicions and should prompt referral."
"Macular oedema is usually diagnosed on slit-lamp examination. These days, it is often confirmed with optical coherence tomography (OCT), which is a sort of visual biopsy obtained in a similar fashion to an ultrasound scan but using light waves. It is a painless diagnostic imaging modality that is performed in the outpatient setting, with the patient looking into the OCT machine for a few moments. OCT is useful both to confirm diagnosis (newer software is now able to distinguish between different patterns of cystoid macular oedema (CMO) associated with different underlying pathology)6 and to monitor....."
You are not over reacting. This is serious business and she should not be intimidating you with any threat. No shape, way, or form. WTF?
And, yes. The older folks are not always treated well. I've seen it time and time again. It is infuriating.
What to do about it? Get a referral from your neurologist or PCP to an opthamologist who is not a dingbat.
My take is that she is DISMISSIVE of anything you have to say.
When you sign up for Gilenya do they ask you who your opthamologist will be? Gilenya has an interest in patient compliance and that they be evaluated as recommended:
"If patients report visual disturbances at any time while taking GILENYA, additional ophthalmologic evaluation should be undertaken."
I did a google search to find how they diagnose macular edema. It does not sound like she did much more than peek in your eyes?:
"Macular edema is not often diagnosed in a routine eye exam. An ophthamologist should be able to diagnose macular edema by putting a dye called fluorescein in through the veins of the arm to study the blood vessels. A fluoroscein angiogram provides insight into the circulatory system of the eye through the use of a camera that can photograph the eye."
"It is not possible to diagnose macular oedema without the help of a slit lamp. A clue might be the loss of the foveal reflex compared to the fellow eye. In wet AMD, there may also be an associated bleed, seen as a well-demarcated deep red patch over the macular area. Even if the view is limited, the history and an abnormal Amsler grid will raise suspicions and should prompt referral."
"Macular oedema is usually diagnosed on slit-lamp examination. These days, it is often confirmed with optical coherence tomography (OCT), which is a sort of visual biopsy obtained in a similar fashion to an ultrasound scan but using light waves. It is a painless diagnostic imaging modality that is performed in the outpatient setting, with the patient looking into the OCT machine for a few moments. OCT is useful both to confirm diagnosis (newer software is now able to distinguish between different patterns of cystoid macular oedema (CMO) associated with different underlying pathology)6 and to monitor....."
You are not over reacting. This is serious business and she should not be intimidating you with any threat. No shape, way, or form. WTF?
And, yes. The older folks are not always treated well. I've seen it time and time again. It is infuriating.
What to do about it? Get a referral from your neurologist or PCP to an opthamologist who is not a dingbat.
I just am speechless on how this doctor treated you very rude and disrespectful. I wonder how many MS patients she saw before gilenya cam out and now she thinks she knows everything about ms which clearly she needs some education. I would consider going to another eye doctor you need to be thoroughly examined and your complaints addressed since there could be dire consequences if something is wrong and not caught in time. As far as the drug company finding out about the 20 ms patients in my opinion I believe that they access the major insurance companies data bases and look at the icd codes that are used by doctors to bill insurance companies and I am sure they have one for followup on gilenya . Patients names are not given out so I believe there is no hippa isssues involved .
skip the whine and cheese for me I prefer chocolate
Kat
skip the whine and cheese for me I prefer chocolate
Kat
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