Trip to the neurologist

doctorFinding the right neurologist is critical for those of us with multiple sclerosis and other chronic diseases.  I have changed neurologists twice since being diagnosed with multiple sclerosis. Once when I had a change of health insurance. And once when I moved to North Carolina.  I have been very fortunate to find wonderful neurologists.  I know this is not the case with everyone  and perhaps the following tools will help you.

My current neurologist has come to our self-help group and discussed various things. She’s a great resource. Right now I am in between visits. And I’m making a list of things that I need to discuss with her.  I have a tendency forget things when I am face-to-face with the doctor.  I can remember them after I leave, though!  I keep them electronically on my smart phone and iPad. They both have voice recognition capabilities which helps me a lot, as my right hand (dominant hand) is very weak and tires quickly.

I think about my medications and side effects that I might be experiencing. Since I’ve started a new medicine, Ampyra, I will give her an update on how that is working.  I have requested a different anti-fatigue medicine as the one I’m using has the side effects of the livedo reticularis.  It is a quite ugly pattern on my legs and arms that looks like I have leopard skin. I certainly do not like it!

As you know doctors always ask you how your pain is when you go see them.  It’s interesting that in my book, Fearless, I say nothing about the pain I experience. The two main points in my book are all the symptoms that I had leading up to the diagnosis that were never linked together to determine I had multiple sclerosis, and what I fear. The pain that I experience does not fit into either of those categories. The pain that I feel is on both legs between the knees and the toes. It is tingling, pins and needles, and a burning sensation. So far, it has not been unbearable or disabling, but I always make sure my neurologist knows about that.

I recently received from everydayhealth.com email with a great article.  It is Six Things MS Nurses Wish their Patients Would do and Why.  This article talks about how important the nurses are in our doctor offices. This article interviewed three nurses who specializes in MS care and this is what they recommend:

  • Exercise the right way,
  • cultivate compassion for yourself,
  • stick to a routine,
  • educate yourself in the smart way,
  • for better bladder function, stay hydrated
  • and finally, find a purpose and have some fun.

The National Multiple Sclerosis Society (NMSS) indicates three things to look for when you’re looking for a neurologist. They are that your MS neurologist should first of all demonstrate knowledge and experience in MS care, and also have a special interest in treating people with MS.  They also recommend he/she works closely with the society.

There are two articles that are important for people to read.

The first one is Make the Most of Your Doctor Visits. It suggests you write things down, review your health insurance plan, consider transportation issues, don’t be bashful, and ask questions. It also lists patient rights and responsibilities.

The second article is Developing a Healthcare Team. Your team should include a neurologist, neuropsychologist, nurse, occupational therapist, physical therapist, urologist, psychologists and counselors, speech and language pathologist, and your primary care physician.

These articles and my own experience give me the tools that I need when I have an appointment.  There is such a wide variety of symptoms to begin with and they are different for each person.  Anywhere along the central nervous system is open to attack.  So it is very important for us to make sure our neurologist knows everything that is happening with us. We must be our own advocate. I hear story after story about people being misdiagnosed for many many years, like me, which is extremely frustrating at best and extremely fearful at worst.

The Internet is a great source to research doctors along with your insurance carrier. The NMSS also has the ability to help you find a doctor in your area.  Don’t feel bad if you’re not happy with your neurologist and you decide to find another one, or any other members of your team. It is critical that you find someone that you can talk with, who listens, who has compassion, and is looking out for your best. 

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3 thoughts on “Trip to the neurologist

  1. How cool that she comes to your self help group!

    Midway through you made the comment that we must be our own advocates. Amen. I have a lot of respect for the responsibility Medical practitioners have. With that being said, I’ve learned through my own experience that you have to be assertive to sometimes get symptoms/issues looked into. It took persistence and months to get an orthopedist to diagnose a significant spine disorder. It took three years for my Hashimoto’s to be diagnosed.

    This is a fantastic blog you have!

    Liked by 1 person

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