Sunday, April 6, 2014

Getting The Most Out Of My Neurologist Visits

Data, data, data  With Multiple Sclerosis, the data I can track to see how I’m doing pretty much boils down to how I feel, what symptoms I experience, and what my MRI scans show. This requires ongoing tracking on my part to monitor my health and get the most out of my doctor visits.

The Neurologist Exam When I go to my neurologist and don’t have a new MRI scan done, the visit mostly consists of me telling the doctor how I’m doing.  Then he'll give what I laughingly think of as an expensive, doctor conducted sobriety test. He'll watch my eyes as they track his finger moving around, he'll watch me touch my finger to his finger and to my nose, back and forth. He'll check my walking gait, speed and balance skills by watching me walk in the hallway.  Forward away from him 20 feet quickly, turn around and walk toward him. Walk on my heels, on my toes, and along a line on the floor heel to toe.

For the exam he'll also poke and scratch me with a small stick to see what I can feel and whether it's a sharp or dull sensation. He'll check my reflexes, flexibility and strength in each limb.We’ll discuss any symptoms I’m having, and he can let me know which medications are on the market that may help alleviate symptoms.

MRI Scans I've learned from my neurologist that MRIs show lesions, and the MRI scans taken with a contrast will show active lesions as a brighter white. Over the course of years of scans, the neurologist will have a lot of scans that he can toggle between to compare lesions from years past and your most recent scan. He'll show you the technician's report and describe his own conclusions from looking at the information. Ask lots of questions if something doesn't make sense. Repeat what you think you understand from what he's said so that he can agree or correct you if you misunderstood.

Some people choose not to get the contrast, and it's a matter of personal preference.  It's important to know though that without the contrast you will not be able to tell if lesions are old or active.

My neurologist says that he's more interested in brain scans than the spine because they help indicate disease progression where symptoms aren't as readily felt or visible. I like to get scans of my spinal cord to show any activity. This information helps me compare how I’m feeling today and any symptoms since my last scan with proof of disease progression.   In the past I've had pretty normal looking brain scans and a spinal cord riddled with lesions.  I understand my doctor's perspective, but given fatigue is my biggest challenge and it’s such a vague symptom, the MRI scans give me feedback that helps me decide what symptoms were likely the result of having an exacerbation (aka flare up as a result of new damage) or just the consequences of old lesions.

MRI scans have been my best source of feedback to start trusting myself again with how I think I'm doing. They've also helped me relax more when I experience new symptoms since I've learned a sense of what is health issues as usual or something that needs immediate attention.

Prepare a list of my symptoms and questions to ask my neurologist.  I keep a health journal that came with my disease modifying drug.  It’s primarily provided in order to track my injection rotations and consistency.  I use it to track my sleep, exercise, weight, and any unusual symptoms.  I also enter alcohol consumption and certain foods that I think can contribute to me not feeling great.

It’s easy to get flustered or forget something I’d like to discuss at the doctor’s visit since time is limited and some discussion may derail my train of thought.  I make sure I have any questions I want to ask written down so I can make the most of my appointment.

I check my notes from my last visit and see what symptoms were discussed and what recommendations were made.  In my appointment I take lots of notes.  I've had a couple of providers in the past that seemed surprised or uneasy with my note taking, but once they got to know me they've all complimented me on my approach to my health.

Consult my support team and invite someone along. I let my inner circle know that I’m going to my semi-annual neurologist appointment so that they can be on standby in case I need to talk following the visit.  At times I will also seek their input prior to the appointment to see if they've noticed any symptoms or have any insight into how I’m doing. Their observations are always helpful and sometimes surprising!

I like to bring someone with me to my appointment so that I have someone to talk to afterwards that may have heard things differently or can reinforce what I heard.  Even taking notes, it’s a lot of information to absorb and it’s helpful to have someone else that heard the same conversation.  Especially if my friend concluded something different than I did, I can pursue it.

Having friends and family accompany me to my appointment is also a tremendous opportunity for bolstering my support system.  My hope is that it will help demystify my disease and how I’m doing.

After taking a good friend with me to an appointment she gave me feedback that she was surprised that I was so timid in the exam room.  She knows me as a person who takes care of myself and strongly advocates for my needs.  With some self-reflection I knew she was correct and my timid nature was in response to not wanting to be labeled a problem or difficult patient. This feedback helped me put my fears in perspective and encourage myself to think of self advocacy as just that, not being difficult or troublesome.

Reward yourself after the appointment.  Plan for and allow time after the appointment to nurture and reward yourself for being responsible and proactive about your health. I remember as a kid getting ice cream after going to the dentist and behaving well.  I think we never grow out of needing positive reinforcement. Self care takes a lot of effort and may not always be enough of its own reward.

My preparation list below is specific for a neurologist visit, but is good for annual checkups and other doctor visits too.

  1. Write down a detailed list of any questions you have for the neurologist. Bring a journal to write down notes during the appointment. Repeat back to the doctor what you understand was said to confirm or correct your impressions.
  2. Bring a list of all medications and supplements you take consistently and once in a while. Make sure to bring insurance card and pharmacy contact information.
  3. Dress comfortably, and wear shoes you wear frequently.  When the neurologist checks your gait, you want to make sure he’s seeing you in your regular shoes.  He may also look at your shoes to see if wear is uneven.
  4. Be prepared to say what symptoms you're experiencing, how long they last and whether they've increased or decreased.  Describe any concerns you have. Think about any possible explanations other than MS for these symptoms.
  5. Know and be able to describe how you're doing with stress, exercise, and diet. Have there been any changes in your life?  
  6. Bring a friend or family member who can help absorb information, be supportive and get an accurate understanding of how you're doing. Make sure you let this person know what you expect from them and how they can help.
  7. Bring your personal calendar to help schedule the next neurologist appointment in six months.
  8. Plan to do something after the appointment that is fun and personally nurturing. 

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