All about your Neurologist and you - September Member Topic of the Month

[tanya38]

I've discussed this before, but maybe some folks will have some tips for me for my upcoming appt. I don't know if it's me, my attitude, or what. Background...I was diagnosed in 2005, started my once a week DMD in Jan. 2006. I've remained on the same DMD for 11 years. I don't think I've ever had a full blown exacerbation since my diagnosis, but I do have mobility problems with my right foot (foot drop). It has progressed, but I'm still able to just use a cane in the house.

I had the same Neuro (MS Specialist) for 10 years, and we had a great patient, doctor rapport, but he retired in 2014. The new Neuro is also an MS Specialist, but his disposition is the complete opposite of my first Neuro. Although my MRI results have remained the same since 2007, the new doc wants me to have an MRI once a year, with contrast, CBC, and that entails going to my PCP for bloodwork, etc. First doc only suggested a possible MRI maybe twice after I was diagnosed. New doc renews my prescriptions for 6 mos. at a time. Original doc wrote the script for 1 year, and only needed to see me once a year, and always said to call him in between if I was having a problem. I had a great rapport with my first doctor, but I'm having real problems communicating with this new doctor. Do I ask him why he only renews my med for 6 mos.??

My appointments thus far have been where he checks reflexes, weight, BP, eye movements, etc. just like my first neurologist, but afterwards you go into his other office, and as he looks at his computer, and asks questions, he types all my answers, still looking at the computer, never making eye contact with me, the patient. Then he asks me if I ever thought about switching my med to Plegridy to which I reply for the 4th time, that I'm not interested.

I realize that he can tell if I'm progressing by an MRI, but could it also be more rewarding to him financially, if he insists that I have an MRI once a year, and an appointment every 6 months?? Or, could it just be that I really liked my first doctor, and I just can't get used to this doctor? Or is this just how most doctors are today? I'm already anxious about my upcoming visit and I already have a bad attitude beforehand. Apologies for griping, but I'm a bit frustrated and thinking maybe I should be looking for a new doc. Thanks all.

Hi Melody60, Ive had similar experiences with my last two neuros. I had a very good neuro but had to leave her due to insurance changes. She dealt with everything concerning my MS. Whether it was fatigue, pain, depression, medications, physical, mental, psychological. She was very proactive when it came to the disease. She taught me to look out for things before they even occurred. And she didn't ignore my questions or concerns.

My last two docs, in my opinion, treated my situation like "well you do have MS for goodness sakes, what do you expect?". They didn't deal with anything other than the DMDs. And one couldn't even get the new order for Tecfidera started for me. Excuse after excuse from his office. And Ive been dealing with a lot of fatigue recently and don't have the energy or patience to deal with continuous calling the office about it. The other doctor was in a large MS center but she also didn't address my other issues. My primary has been dealing with things like pain management (currently Im on Tylenol and Ibuprofen). Sometimes I take Gabapentin and Baclofen, but not daily because they cause leg weakness. He also gave me a prescription for a cane because he was concerned about my walking. He completed my SSDI forms because her RN filled out the papers incorrectly (the doc wasn't even aware my paperwork had been completed by her RN that I had never met).

Another time, she basically accused me of taking the wrong dose/too much of one of my meds. Instead of saying, send me a copy of the bottle label or call and read it to me when you get home, she looked up from computer at me like "you don't know what you're talking about", laughed and said that wasn't possible, that dose was too much. So when I got home I took a screen shot and sent it to her. She didn't seem to acknowledge that I had already lowered the dose myself because of how it made me feel, she seemed stuck on insisting that it was never written at the original dose. When I tried to switch MDs in her office after a year of being ignored, I was told that their policy was not to switch within their office and that I needed to find a MD elsewhere. I understand that the MD cant fix all my issues. But at least, address them and not push me aside because, "You don't look like you have MS".

Right now, I feel just felt out all alone. I feel like Im suffering in silence with my symptoms, but like you, my MRIs haven't changed for about 5 years. Hopefully in Oct, I will be able to return to my previous MD. I know she can't cure me or even correct all my symptoms, but I trust that she will do her very best to help me. And that's all I ask for from a doctor. I hope your visit in Oct goes better for you and you get your issues addressed. I don't think you're griping and I understand your frustration. I don't understand being a MS specialist, and not addressing all issues with the disease. Im just saying!!

[tanya38]

this is not your actual question but i am only getting a 20 minute appt (after the initial one) for my yearly appt which is not adequate and i wonder what others get. i have kaiser.

HI Lisams, Im not sure how long my appts are. I would say about 30 min average. Is that time issued from the MD or through insurance? Ive never been told I only have a certain amount to time. Sometimes I feel rushed but usually Im ready to leave anyways, because nothing is getting accomplished. I feel like the time is enough for what I need to discuss. Its the quality of the time that I have an issue with. My appts are usually every 6 months unless something changes and I need to be seen.

What do you feel would make your visit better? Do you feel like your issues are not being addressed? I have had MDs that made me feel like I was just there for them to get paid.

[dwiktor]

Concern about my current nuerologist

I had the best neurologist ever but he left the clinic of the teaching hospital when it was bought it. I was assigned to one of his protege's but she left and later opened her own center. Years later I am at her center it is warm caring responsive. I have a couple issues. I do have some nuero problems not related to MS and I really can't even discuss them with her. I have adapted. However I am concerned about her prescriptions. I had RLS for many years and was on clonezepam. It was rough getting off but I was at the highest dose. She tried several things then finally "sleepers" as she called them. Said she used them sometimes herself. I used them for 10 days with a sleep regimen (going to bed at the same time etc.) and found I only needed them occasionally. Also during this time I developed some nuero issues unrelated to the MS and went through a series of MRIs--4. This has left me really not willing to get back into a tube again.

So come the mid year visit (on my birthday), it is really hot I do not have AC in my car so I am fairly worn out when I get there. She asks me a question and I just burst into tears of frustration and being tired. I leave with a prescription for the "sleepers" (Ambien), RX for 4 Valium and and RX for escitalopram, which she explains she took and it "takes the edge off" and gave me a story about it. When I cooled off and rested I recovered and realized the medications I had. I have a real sense of uneasiness and I am not sure why. I am 37 years from diagnosis and 39 from onset. I have my regular MD put me on blood pressure meds and tell me that is what she takes but I have consistently seen her since 1983. I am uncomfortable with the term "sleepers" and the multiple prescription I got the last visit. I am uncomfortable with her disclosures, I know meant to comfort me but make me concerned for her. I hate changing doctors but a recent experience where I had difficulty walking but was not MS related leaving me to figure it out on my own was troubling. Also she does not accept any insurance except Medicare/medicaid.

When do you know it is time to change and how to you find a new doctor if you decide that.


**Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[melody60]

Hi Melody60, Ive had similar experiences with my last two neuros. I had a very good neuro but had to leave her due to insurance changes. She dealt with everything concerning my MS. Whether it was fatigue, pain, depression, medications, physical, mental, psychological. She was very proactive when it came to the disease. She taught me to look out for things before they even occurred. And she didn't ignore my questions or concerns.

My last two docs, in my opinion, treated my situation like "well you do have MS for goodness sakes, what do you expect?". They didn't deal with anything other than the DMDs. And one couldn't even get the new order for Tecfidera started for me. Excuse after excuse from his office. And Ive been dealing with a lot of fatigue recently and don't have the energy or patience to deal with continuous calling the office about it. The other doctor was in a large MS center but she also didn't address my other issues. My primary has been dealing with things like pain management (currently Im on Tylenol and Ibuprofen). Sometimes I take Gabapentin and Baclofen, but not daily because they cause leg weakness. He also gave me a prescription for a cane because he was concerned about my walking. He completed my SSDI forms because her RN filled out the papers incorrectly (the doc wasn't even aware my paperwork had been completed by her RN that I had never met).

Another time, she basically accused me of taking the wrong dose/too much of one of my meds. Instead of saying, send me a copy of the bottle label or call and read it to me when you get home, she looked up from computer at me like "you don't know what you're talking about", laughed and said that wasn't possible, that dose was too much. So when I got home I took a screen shot and sent it to her. She didn't seem to acknowledge that I had already lowered the dose myself because of how it made me feel, she seemed stuck on insisting that it was never written at the original dose. When I tried to switch MDs in her office after a year of being ignored, I was told that their policy was not to switch within their office and that I needed to find a MD elsewhere. I understand that the MD cant fix all my issues. But at least, address them and not push me aside because, "You don't look like you have MS".

Right now, I feel just felt out all alone. I feel like Im suffering in silence with my symptoms, but like you, my MRIs haven't changed for about 5 years. Hopefully in Oct, I will be able to return to my previous MD. I know she can't cure me or even correct all my symptoms, but I trust that she will do her very best to help me. And that's all I ask for from a doctor. I hope your visit in Oct goes better for you and you get your issues addressed. I don't think you're griping and I understand your frustration. I don't understand being a MS specialist, and not addressing all issues with the disease. Im just saying!!

Thanks Tanya. I hope you can return to your previous MD in October.

[itasara]

Melody, is your new neruologist younger than your first one? Welcome to the new world of medicine, not the same one we all new.. Yes you could ask him why he won't prescribe your medication for one year. Computers are the new secretaries. My neurologist spends the first part of our visit typing away. He can't look at me and he says I talk too fast for his typing skills! Now my gyn has a "scribe" that stays in the office, usually a student accepted to med school, who takes notes and probably puts it in the computer or maybe she is typing on the computer during the visit.. I didn't pay much attention. I see my neuro in general once a year. I haven't had any major issues, but he says call
if I have any. I just saw my pcp today for yearly exam. I have a better rapport with him than my neurologist and he asked me several questions about my MS. I once asked my neurologist about a bladder issue I was having and he referred me to ask my GYN about it. So I don't say too much to my neurologist in general.

[itasara]

How many MRIs does one really need?

My MS Specialist does a neurological exam, asks a few questions and gives whatever time I need to ask her my questions. She did one MRI when I began seeing her, because she had some questions about my dx and wanted to confirm it. Now, she does MRI's once every five years.
My first neurologist did 7 MRI's within the first two years, but it was prior to dx, and lots of flares and weird symptoms. He didn't do any subsequent MRI's during the remainder of the five years that I went to him.

I was dx'd 11 years ago. That was when I had my last MRI. Who knows maybe I'll hve another one this year? The question to ask is if you are doing well and don't have problems with your medication and don't have any or not severe relapses, then what will chance if you have an MRI? Will you change your medication for no reason? I had this chat today with my pcp who agrees with me that way to much money is spent on MRIs for MS patients. I had a brief chat with a neurologist on one of those phone call "webinars" and she says the umbrella neurology org. recomends an MRI at least every year. I don't agree with it, my PCP doesn't agree with that and apparently my neurologist isn't on board with that either. My doc today said what will change if you have an MRI? Will it show if you will be walking in the future? Will is show if you will improve or get worse in the future? No it usually doesn't. You can have a lot of "lit up" or active lesions on the MRI and yet you feel just fine, and vice verse. So I say, follow your heart, listen to your doctor's point of view, than make a decision based on all the information. Sounds like your neurologist is pretty practical as well!