Thursday, July 24, 2014

Tuesday, May 05, 2009 Karen, Community Member, asks

Q: Seeing my Neurologist

I have been seeing my neurologist for four years.  He is well known in the community for his involvment with the MS society.  He is friendly and professional.  I am probably intimidated by him.  However, he has heard what I have said about my symptoms and most of the time he says they are "pseudo" and therefore probably temporary.  He has perscribed prednisone from time to time.  I can't just go in to see him, he is only at my clinic once a month.  I like him, but I don't feel like he and I have a close doctor, patient relationship.  I am really concerned about my worsening memory problems, but he said that there is really nothing he can perscribe for cognitive problems.  Is that true?

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Answers (3)
awordlover, Community Member
6/ 9/09 3:54pm

Regarding your memory problems, he should be referring you out for a cognitive workup which is a battery of tests that measures short term, long term and intermittent memory. Usually this physician is a specialist in dementia so don't let that scare you away.  I have seen some MSer's being offered Abilify, a dementia drug that has had some success. 

 

But know that with MS, memory problems is only one of a very long list of symptoms. You would do well to practice word association, put post it notes in places to help you remember, and engage family member who live with you to keep you on task and to cue you when you seem to be going blank.

 

Good Luck

Anne

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joguinn, Community Member
5/ 6/09 1:43pm

I could repeat the incredible journey to diagnosis that I went. And, I could detail my ongoing struggles with neurologists. Since I have already written about it on my blog you can read it there if you choose.

I have come to expect neurologists to discount and disregard my symptoms. Here is an example of how I deal with this. My current neurologist doesn't believe that pain is associated with MS-he suggests ibuprofen. After that visit, I went home and found an article on the internet (in this case from the MS society) that clearly detailed the medical evidence for the symptom. Then, I faxed the doctor a copy with a note referencing our visit and the discussion. On my next visit I brought the article and made sure we discussed it. He still has doubts, so I also went to see a pain doctor who is commited the treating MS pain. I also keep a journal of my symptoms, questions, and research.

Now, when I go to the neuro with a specific problem in mind to discuss I:

--write down my specific questions

--I bring supporting documentation

--I find other doctors or therapists in specialties related to the specific problem

--I set a personal boundary that doctors do not define my illness, my experience with my body, or my treatment options

--I bring a second person to keep notes from the discussion

--depending on visit frequency, I request copies of my patient records from all providers and keep them on file. (Under federal HIPA guidelines you have the right to do this). Also, if something is written in my chart that is defamatory, judgemental, or just plain wrong I request in writing that it be changed, taken out, or that additional information is added (other docs notes that present a different picture, test results, etc.)

 

After years of allowing doctors to define the reality of my illness I have come to realize that I am the only one who know my body. I am in charge of my health and the doctors should be working for me. Be educated about the disease, do research, ask questions, and demand the healthcare you deserve.

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awordlover, Community Member
6/ 9/09 3:50pm

Hi Karen:

 

I see from your profile that you live in Sandy Lake, Pennsylvania.  You have a couple of very good teaching hospitals near you and some that are a bit of a hike.  If I were you, I would contact the closest teaching hospital to your home base, and then research who is their best neurologist. Often it is the head of neurology department, and they are often so busy and not taking on new patients. So then I'd go down a peg and get the second best. 

 

The National MS Society has a list on their website for treatment locations in PA and Pittsburgh and Danville seem to be the closest to you. 

 

Here's the link:

 

http://www.nationalmssociety.org/living-with-multiple-sclerosis/getting-the-care-you-need/treatment-locations/pennsylvania/index.aspx

 

I know you have been seeing your present neuro for 4 yrs but if you are only seeing him/her once a year and you are on one of the disease modifying drugs, I would like to see you monitored more closely - say every six months at least.  Also, it is always nice to have a doc with whom you have a good rapport and it doesn't sound like that is what is going on.  You need a doctor who will return your phone calls, offer advice or order medication for flares/symptoms and who "hears" you.

 

There is nothing wrong with changing doctors - it is your health.  I myself have had MS for 34 years now and have gone through at least that many doctors - some I didn't get along with, some didn't have my best interests at heart, some wanted to put me in a wheelchair and give up on me, some offered treatments I disagreed with and some just plain ol' died and went to doctor heaven.  Just be sure to carry your history with you, your MRI's w/reports and any testing you have had since diagnosis.

 

Remember, you need to be comfortable with your health care provider.

 

Take care and let us know how you are doing.

Anne

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By Karen, Community Member— Last Modified: 12/25/10, First Published: 05/05/09