Aa
Neurologist Appointment
I saw my Neurologist for the first time in a year. Well I saw a Neurology Resident. First off he told me I do not have anything wrong with my eyes because I do not see two of anything. I explained I have had double vision since the age of two and when you have brain damage that young the brain adjusts by switching from eye to eye. He did not buy it. This is good because a normal doctor would question my driving because my eyes are worse. I was worried the MS Specialist would question my driving and send me for the driving evaluation I cancelled on my own.. It reminded me of the military eye exam, you have two eyes therefore you have 20/20 vision.
He then tested my walking in the exam room walking two feet back and forth to him. He did more neurological tests and left. I was hoping to get on Ampyra I walked down the block before the appointment so I was tired.
He asked me if I had ever been on Topamax for headaches. I said I had and it did not work and it made me lose bladder control. He said that is not possible. I said well every day I was on it I wet myself and when I went off it I no longer wet myself. He said that is not a side effect. I said that is what happened to me.
An hour later the MS Specialist came in. We had a ten minute rushed appointment. I never got to ask any questions such as what about Ampyra. He ended with you have some statement like you only have a little MS.
My husband who was in the waiting room said that is weird. I see your progression. The horrible spasms, your slower, wider walk, dragging your foot, and dropping things.
I knew on Wednesday when I had to park down the street from the Federal building and was late for a meeting with a U.S. Senator. Normally I would walk fast or jog and I just could not. It was not even hot yet. That is how I notice my MS. I used to be able to use my right side to pull my left.
This once a year visit was 10 minutes and $200 out of pocket plus my insurance.
Lately my Medical experience have been down right stupid.
Alex
He then tested my walking in the exam room walking two feet back and forth to him. He did more neurological tests and left. I was hoping to get on Ampyra I walked down the block before the appointment so I was tired.
He asked me if I had ever been on Topamax for headaches. I said I had and it did not work and it made me lose bladder control. He said that is not possible. I said well every day I was on it I wet myself and when I went off it I no longer wet myself. He said that is not a side effect. I said that is what happened to me.
An hour later the MS Specialist came in. We had a ten minute rushed appointment. I never got to ask any questions such as what about Ampyra. He ended with you have some statement like you only have a little MS.
My husband who was in the waiting room said that is weird. I see your progression. The horrible spasms, your slower, wider walk, dragging your foot, and dropping things.
I knew on Wednesday when I had to park down the street from the Federal building and was late for a meeting with a U.S. Senator. Normally I would walk fast or jog and I just could not. It was not even hot yet. That is how I notice my MS. I used to be able to use my right side to pull my left.
This once a year visit was 10 minutes and $200 out of pocket plus my insurance.
Lately my Medical experience have been down right stupid.
Alex
Sarah I brought up the spasms. He said they are myclonus? and yes they can be painful. he said going from 300mg a day of Trileptol to 400 should work. If this does not work he has referred me to the pain clinic which I can't afford. I may postpone my appointment simply because I think it is a waste of time going to MS Specialists. I basically only need to save my spot with him in case I get really disabled. Trying to get on with any Doctor in this area if you are not a patient takes at least 8 months.
Laura Greensboro is too far and I would need a Doctor who practices at Duke if I were hospitalized.
mb I like my Senator. Polly and I keep it friendly in general because you never know who might help you.
Alex
Laura Greensboro is too far and I would need a Doctor who practices at Duke if I were hospitalized.
mb I like my Senator. Polly and I keep it friendly in general because you never know who might help you.
Alex
I am sorry that you had a disappointing appointment...That out of pocket cost is fricking ridiculous...The meeting you had with the senator?...Hope you went off on him Alex...
I hope your next visit is better...
mb
I hope your next visit is better...
mb
Hi Again, Maybe look in Greensboro? Also call the MS Society I think there are programs that they can recommend help for cost of doctors.
***** that you are not in Charlotte I can give you that name of the Doc I saw. He is known as the BEST MS Doc in NC, maybe in the south, Cant remember. I really liked him but I moved to CT and he took the time to write a letter to my new MS doc up here to explain what he saw when he examined me and thought about my MS. ounds like that is what you need another doc to tell your doc that there is no such thing as "little MS" Maybe in the beginning stages but you dont sound like you are in the beginning stages MS!!!
HAve you gotten an MRI yet? IF No your General Practice Doc can order one for you, that will help alot if you have that. I would wait till you feel your worse though so It will really show your Lensions and prove to your MS doc that you have more than just a little MS!!!!!
Hang in there!!
***** that you are not in Charlotte I can give you that name of the Doc I saw. He is known as the BEST MS Doc in NC, maybe in the south, Cant remember. I really liked him but I moved to CT and he took the time to write a letter to my new MS doc up here to explain what he saw when he examined me and thought about my MS. ounds like that is what you need another doc to tell your doc that there is no such thing as "little MS" Maybe in the beginning stages but you dont sound like you are in the beginning stages MS!!!
HAve you gotten an MRI yet? IF No your General Practice Doc can order one for you, that will help alot if you have that. I would wait till you feel your worse though so It will really show your Lensions and prove to your MS doc that you have more than just a little MS!!!!!
Hang in there!!
Did you ever get a chance to bring up the diaphram spasms with this guy? That is a significant issue for you and if he didn't answer your questions in the office, I'd call the office and say that you need to talk to him. They can't fill for phone calls and since you didn't get your money's worth from the physical appointment, you deserve phone time with him. Oh, and don't forget about getting that ampyra script. Call the NP and have them initiate it. You don't have to ask the doctor. He just has to sign off on it. :)
July and August are "new resident" months at university hospitals and these specialists love to let their residents do the intial interviews so they can get experience. However, this situation causes a LOT of issues for us as patients who go to academic specialists. It is a great injustice for us to deal with these "gree" doctors as Ess calls them. They usually cause more problems with the face time we get later with the neuro than do any good.
If you can postpone your next year's appointment until after the intern rush is over, you will fare better with just dealing with the neuro. I wonder if we can decline being seen by the resident when we go in. Maybe we can say we want the doctor in there with the neuro when he/she is doing the interview. I don't know how to fix this except just not going in the summer months unless I am having a problem.
I hope as this heat starts going down that at least this won't contribute to your symptoms. Take care my friend.
Julie
July and August are "new resident" months at university hospitals and these specialists love to let their residents do the intial interviews so they can get experience. However, this situation causes a LOT of issues for us as patients who go to academic specialists. It is a great injustice for us to deal with these "gree" doctors as Ess calls them. They usually cause more problems with the face time we get later with the neuro than do any good.
If you can postpone your next year's appointment until after the intern rush is over, you will fare better with just dealing with the neuro. I wonder if we can decline being seen by the resident when we go in. Maybe we can say we want the doctor in there with the neuro when he/she is doing the interview. I don't know how to fix this except just not going in the summer months unless I am having a problem.
I hope as this heat starts going down that at least this won't contribute to your symptoms. Take care my friend.
Julie
Thanks for letting me vent. I feel better.
We have 4 MS Specialist and I go to the one I consider the best. He is so busy it is not funny. He has over a thousand diagnosed MS patients, plus thousands of other patients. All of the MS Specialists in our area are rushed. We have one at Duke, One at UNC and she hates patients, and two at Raleigh Neurology close to retirement. We are in the center of NC and they cover from here to the coast.
Yes every Specialist I see is $200 or more out of pocket. Having Grady in the veterinary hospital for three days for a snake bite was less than my MS Specialist out of pocket. Oh and the different Veterinarians all poked their heads in to see how my MS was when I picked him up.
I am coming back as a dog they get better medical care and there Doctors are usually nice to them.
Alex
We have 4 MS Specialist and I go to the one I consider the best. He is so busy it is not funny. He has over a thousand diagnosed MS patients, plus thousands of other patients. All of the MS Specialists in our area are rushed. We have one at Duke, One at UNC and she hates patients, and two at Raleigh Neurology close to retirement. We are in the center of NC and they cover from here to the coast.
Yes every Specialist I see is $200 or more out of pocket. Having Grady in the veterinary hospital for three days for a snake bite was less than my MS Specialist out of pocket. Oh and the different Veterinarians all poked their heads in to see how my MS was when I picked him up.
I am coming back as a dog they get better medical care and there Doctors are usually nice to them.
Alex
Dog gonnit, Alex! I hate it that your appointment was so rotten. Spasms for me are often set off by stressful situations. If it was me, my entire body would be in a spasm after this very disappointing bogus visit.
You do NOT need to be on the bottom of his guys list. You need to be at the top. If you go and see someone again (which I hope you're able to afford), I would tear up and get emotional or let your doctor know in another way exactly how horrible these diaphram spasms are. If he doesn't respond to that, he's heartless and you need to find someone that cares. You do not need to be going through this without treatment of some sort.
Deb
You do NOT need to be on the bottom of his guys list. You need to be at the top. If you go and see someone again (which I hope you're able to afford), I would tear up and get emotional or let your doctor know in another way exactly how horrible these diaphram spasms are. If he doesn't respond to that, he's heartless and you need to find someone that cares. You do not need to be going through this without treatment of some sort.
Deb
Big hugs, hon. I'm sorry your appointment didn't go as you wanted. It ***** that it is the one appointment you get for the year; you forked out good money for it and basically got no satisfaction from it.
I completely, utterly and totally disagree that you should be at the bottom of any list because you don't look like you are suffering as bad as the next person. BS. I wish there were somewhere else you could go that would treat you like the special person you are.
And, pardon me, but "a little MS"???? Is that like being "a little pregnant"? Either "ya gots it or ya don't". There isn't "a little MS". *******.
I hope your spasms have calmed and your throat feels better. You need a break.
Many hugs!
I completely, utterly and totally disagree that you should be at the bottom of any list because you don't look like you are suffering as bad as the next person. BS. I wish there were somewhere else you could go that would treat you like the special person you are.
And, pardon me, but "a little MS"???? Is that like being "a little pregnant"? Either "ya gots it or ya don't". There isn't "a little MS". *******.
I hope your spasms have calmed and your throat feels better. You need a break.
Many hugs!
HI Alex, When I got Diagnosed I went to the MS Society Website, I was in NC also but in Charlotte (guessing that is where you are since you said you went to Duke.) On the MS SOCIETY website you can call them and they will give you a list of all the Neuro doctors in your state. From this list I crossed out all the docs that were NOT MS SPECIALIST. I did not want to see just a Neuro who was familur with MS I wanted a Specialist. I had already saw one doc that was useless. I actually moved to CT and found a MS Clinic which all they do is handle MS and they have all the different doctors you need when you have MS. It was the best decision I made. I looked to see if NC had one and I found a UNC Neurology division for MS. Here is the web site, give them a call and see what they are like. We have enough problems to deal with and going to a useless doctor should not be one of them. That was my top priorty when I got Diagnosed because I knew nothing about MS and I wanted to make sure i saw a Doc that was a specialist in it. My MS doctor actually has MS so to me that was great because he KNEW what I was talking about when I explained what was going on with me, Good Luck!!!
http://www.med.unc.edu/neurology/divisions/multiple-sclerosis
http://www.med.unc.edu/neurology/divisions/multiple-sclerosis
Alex, you do need to find another doc to treat you but I understand you are limited. I like ess' suggesion that you see tje NP. It stinks you have to pay $200 - what kind of office copay is that? If you went to dermatologist would it still cost $200?
Forget understanding that you are a low priority - you belond at the top of the list just like the rest of us.
Sorry about the spasms. I hope they don't last.
Lu
Forget understanding that you are a low priority - you belond at the top of the list just like the rest of us.
Sorry about the spasms. I hope they don't last.
Lu
This guy is the only MS Neurologist at Duke. I have been to most of the other MS Specialists in the area. There are only four and over 5,000 diagnosed MS patients and probably more undiagnosed. I saw this guys PA in February. He also is $200 out of pocket. He is good but he wanted me to see this guy due to the diaphragm spasms. All the Doctors feel the same way, I am last on the priority list until I can't walk or can't see. I guess I can understand. It is just hard.
Oh and I had a diaphragm spasm tonight while we were at a concert. Also my throat is tight and painful even to the touch. Something new. May not be MS, who knows?
Alex
Oh and I had a diaphragm spasm tonight while we were at a concert. Also my throat is tight and painful even to the touch. Something new. May not be MS, who knows?
Alex
Do you think it was a wasted trip to the neurologist? Did they do anything to help you?
I'm sorry it didn't go well. I always seem to feel like I'm being rushed, too. It shouldn't be that way. And I know what you're saying about the neuro residents/neuros - sometimes it does seem like we've done a lot more research on things then they have. Plus, we know what's happening with us - we know the symptoms we're experiencing.
So...any plans now or just going to make another appt to see them in another year from now?
-Kelly
I'm sorry it didn't go well. I always seem to feel like I'm being rushed, too. It shouldn't be that way. And I know what you're saying about the neuro residents/neuros - sometimes it does seem like we've done a lot more research on things then they have. Plus, we know what's happening with us - we know the symptoms we're experiencing.
So...any plans now or just going to make another appt to see them in another year from now?
-Kelly
Urinary Incontinence is a listed side effect of Topamax, so I would begin to question the resident. http://www.topamax.com/sites/default/files/topamax_uspi_0711.pdf#zoom=100
Bob
Bob
Girl, you need a new doc! I would not ever give them another red cent! You are NOT a number, you are a person! You are not to be dismissed! Who do they think that they are. I once called and had a long conversation with a medical office manager, and the manager of the physician offices of a hospital. The next time that I saw one of their doctors, it was a new experience!
Alex, I am sorry you has this experience. As for Topamax my friend took it and also wet her pants while on it. Her Dr and pharmacy told her that's not an uncommon side affect. So I think that Dr needs to study up on his drugs a little more. And improve his bedside manner.
Beema
Beema
Another thing---does this neuro have a PA or an NP? If so, try making an appt. with just that person in the future. Could be cheaper, could be easier to see, and they can prescribe any MS drugs themselves.
My NP at Hopkins is the greatest. She is as knowledgeable as a neuro, very experienced, and personable to boot.
Just a thought.
ess
My NP at Hopkins is the greatest. She is as knowledgeable as a neuro, very experienced, and personable to boot.
Just a thought.
ess
Oh, and by the way, Topamax has a big side effects profile. I was on it earlier this year, and not only did it do nothing for the pain, it caused horrible GI symptoms.
That was prescribed by pain management. My kind PCP told me Topamax is no good, and got me off.
ess
That was prescribed by pain management. My kind PCP told me Topamax is no good, and got me off.
ess
Alex, you know far more about MS than that green resident, so I would consider putting up with him the price of admission for the neuro.
That's the guy who really sux. I really don't care how rushed he is, he's a jerk.
I know you can't do much about your medical situation, but you can feel justified anger, and that's empowering. Much better than lamenting things. Meanwhile, you've probably made friends with some of his office staff. Email them and see if you can get a script for Ampyra that way.
ess
That's the guy who really sux. I really don't care how rushed he is, he's a jerk.
I know you can't do much about your medical situation, but you can feel justified anger, and that's empowering. Much better than lamenting things. Meanwhile, you've probably made friends with some of his office staff. Email them and see if you can get a script for Ampyra that way.
ess
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