HealthCare Journey for Multiple Sclerosis
  • Home
  • About Us
  • Virtual MS Center
    • Q & A for Virtual MS Center
    • Read About Our Virtual MS Center Staff
  • News & Resources
  • Seminar Registration
  • Health & Wellness
  • Blogs
    • Physician Blog >
      • Healthcare Provider Blog
    • Physical Therapy Blog
    • Patient Blog
    • Caregiver Blog
    • Research Blogs >
      • "Ask Dr. Debbie" Research Blog
      • Multiple Perspectives In Multiple Sclerosis Research Blog
  • About MS
    • What is MS?
    • Diagnosis
    • Treatment
    • MS Tips
  • Symptoms
    • Balance and Walking Issues
    • Breathing/Respiratory
    • Bowel Dysfunction
    • Cognitive Dysfunction
    • Crying/Laughing Uncontrollably (PBA)
    • Depression and Anxiety
    • Dizziness/Vertigo
    • Dysphagia
    • Fatigue
    • Foot Drop
    • Hearing or Smell or Taste Changes
    • Heat Sensitivity
    • Leg Weakness
    • Loss of Hand Dexterity and Coordination
    • Memory and Mutliple Sclerosis
    • Migraines
    • Numbness/Tingling/Altered Sensation
    • Nystagmus and Oscillopsia
    • Pain
    • Sexual Dysfunction
    • Sleep Issues
    • Spasticity/Spasms/Cramps
    • Speech/Swallowing
    • Urination/Bowel Problems
    • Vision
  • MS Clinics
  • MS Topics
    • Pregnancy and Infertility
    • Caregivers and Family Members
    • Employment and MS
    • Medical Costs and Insurance
    • Pediatric Multiple Sclerosis
  • Register With Us
  • Terms of Use/Privacy/HIPAA
  • MS HealthCare Journey

Welcome to the Virtual MS Center!

Ask any question you want about Multiple Sclerosis and one of our experts will answer it as soon as possible.
CLICK HERE TO ASK YOUR QUESTION!

How can I get my doctor to understand my MS?

4/20/2015

 
Here is My Question:
Recently I read that many lesions in MS are invisible. Among other things, it said most lesions seen in the MRI of the brain do not correlate well with the problems the patient has. "A good doctor will not try to tell you different". My neuro told me on my last visit "well, I would say from your history and where your lesions are, you won't have any difficulty walking"! Now, I know that should be good news, but I felt "let down", as that has never been my concern or problem. My problems have all been cognitive. I "forget where I'm going when driving down the road", or "my children tell me they already told me that several times, I see things (words and numbers) wrong, my hearing and sense of smell is affected. It has been very difficult and I think I felt "my doctor doesn't even know me!" With all due respect to those with difficulty walking, if I were given a choice (of course we never are), I would actually choose the wheel chair over "having all my 'faculties' about me". 

It is so frightening when you are just 2 blocks from your home and can't remember how to get there! Driving home and "suddenly can't remember where you are going". I could go on, but I won't bore you with more. I'm sure you get the idea. My question is, I am going to be seeing my neuro May 5th. How can I make him understand this? I believe I had a "flare" recently, as the right side of my head plugged (for lack of better term); I am left with much worse ear noises and now I have this strange smell that comes and goes! Some of my cognitive issues are now back or worse. He never addresses my cognitive issues and I feel he doesn't care about that. As long as I can walk, I guess I'm ok. I'm afraid he won't take me seriously. I have printed off your article on smell and hearing and the one on "hidden" lesions. I wanted to know your opinion on this? I sometimes wonder if I have other lesions (I have actually, only had 2 MRIs in the beginning, with and without contrast), plus I had a spinal tap that all said I had MS. But shouldn't I have had another MRI since I have been on treatment? I was diagnosed in 2012. He just looks at my old MRI's. I just don't feel I'm taken seriously because I am mobile. I once thought, that's what MS is. I now know differently. I guess that's why many refer to it as the "invisible" disease. Thank you for listening. I just want my neuro to understand "me".

Answer:
Please refer to a blog I wrote over a year ago called, "Finding a doctor for your MS.” Your question really gets at the heart of the doctor-patient dynamic. The patient wants to know what specifically is causing their problem and what if anything can be done about it. The doctor in turn tries to answer your questions in a way that will, “do no harm” , but provide enough information to assist and reassure, if possible. Sometimes doctors will point to something positive to deflect from your single minded concern about another issue. This is often not a good strategy unless your concern is adequately addressed. This is commonly the case in people with MS primarily concerned about hidden symptoms for which their is little objective evidence. 

There are two good strategies to take with your doctor in this circumstance:
1. Ask him or her, “what is causing my concerns with cognition, if it is not directly related to my MS?”  Remember, research suggests that when one’s perception of cognitive difficulty is worse than what other’s observe, there are often other factors causing your perception of cognitive impairment including depression, anxiety and stress. This would be good news as these problems are very treatable
2. Ask him or her for an independent second opinion as to the cause of your cognitive difficulties. This kind of independent consultant should have no stake in maintaining an ongoing doctor-patient relationship and may be more inclined to give you the straight scoop, so to speak.

Good luck

Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Professor of Clinical Neurosciences
University of California San Diego


Comments are closed.

    RSS Feed

    PLEASE NOTE: This information/opinions on this site should be used as an information source only.  This information does not create any patient-HCP relationship, and should not be used as a substitute for professional diagnosis and treatment.  Please consult your health care provider before making any healthcare decisions or for guidance about a specific medical condition.
    Read About Our Virtual MS Center Authors

    Archives

    March 2023
    February 2023
    January 2023
    December 2022
    October 2022
    September 2022
    August 2022
    June 2022
    May 2022
    April 2022
    March 2022
    February 2022
    December 2021
    November 2021
    October 2021
    September 2021
    August 2021
    July 2021
    June 2021
    May 2021
    April 2021
    March 2021
    February 2021
    January 2021
    December 2020
    November 2020
    October 2020
    September 2020
    August 2020
    July 2020
    June 2020
    May 2020
    April 2020
    March 2020
    February 2020
    January 2020
    December 2019
    November 2019
    October 2019
    September 2019
    August 2019
    July 2019
    June 2019
    May 2019
    April 2019
    March 2019
    February 2019
    January 2019
    December 2018
    November 2018
    October 2018
    September 2018
    August 2018
    July 2018
    June 2018
    May 2018
    April 2018
    March 2018
    February 2018
    January 2018
    December 2017
    November 2017
    October 2017
    September 2017
    August 2017
    July 2017
    June 2017
    May 2017
    April 2017
    March 2017
    February 2017
    January 2017
    December 2016
    November 2016
    October 2016
    September 2016
    August 2016
    July 2016
    June 2016
    May 2016
    April 2016
    March 2016
    February 2016
    January 2016
    December 2015
    November 2015
    October 2015
    September 2015
    August 2015
    July 2015
    June 2015
    May 2015
    April 2015
    March 2015
    February 2015
    January 2015
    December 2014
    November 2014
    October 2014
    September 2014
    August 2014
    July 2014
    June 2014
    May 2014
    April 2014
    March 2014
    February 2014
    January 2014
    December 2013
    November 2013
    October 2013
    September 2013
    July 2013
    June 2013

    Categories

    All
    Accessible Housing And Environmental Modifications
    Anxiety
    Balance
    Bowel Problems
    Caregivers
    Cognitive Function
    Compliance
    David Rintell Ed. D.
    Deborah Backus Blogs
    Depression
    Diagnosis
    Diet
    Dizziness
    Dosing
    Dr. Greenberg's Q&A
    Dr. Kinkel's Q&A
    Dr. Miravalle's Q&A
    Dr. Nielsen's Q&A
    Dr. Osborne's Q&A
    Exercise
    Experimental Treatments
    Eye Surgery
    Fatigue
    Fatique
    Flu Shot
    Foot Drop
    Herbs
    Immunosuppression
    JCV
    Lasik Surgery
    Lesions
    Lori Kostich's Q&A
    Lyme Disease
    Medications
    Migraines
    Mobility
    MRI
    MS Hug
    Other Diseases
    Pain
    PML
    PPMS
    Pregnancy
    Relapse
    Safety
    Sarah Wargo's Q&A
    Sexual Dysfunction
    Side Effects
    Smoking
    Spasticity
    Stem Cell Transplantation
    Steroids
    Stress
    Supplements
    Surgery
    Symptoms
    Treatment
    Urination
    Viruses
    Vision
    Vitamin D
    Vitamins
    Weakness


© 2022 HealthCare Journey, LLC. All Rights Reserved.
HealthCare Journey™ is a trademark of HealthCare Journey, LLC
Picture
  • Home
  • About Us
  • Virtual MS Center
    • Q & A for Virtual MS Center
    • Read About Our Virtual MS Center Staff
  • News & Resources
  • Seminar Registration
  • Health & Wellness
  • Blogs
    • Physician Blog >
      • Healthcare Provider Blog
    • Physical Therapy Blog
    • Patient Blog
    • Caregiver Blog
    • Research Blogs >
      • "Ask Dr. Debbie" Research Blog
      • Multiple Perspectives In Multiple Sclerosis Research Blog
  • About MS
    • What is MS?
    • Diagnosis
    • Treatment
    • MS Tips
  • Symptoms
    • Balance and Walking Issues
    • Breathing/Respiratory
    • Bowel Dysfunction
    • Cognitive Dysfunction
    • Crying/Laughing Uncontrollably (PBA)
    • Depression and Anxiety
    • Dizziness/Vertigo
    • Dysphagia
    • Fatigue
    • Foot Drop
    • Hearing or Smell or Taste Changes
    • Heat Sensitivity
    • Leg Weakness
    • Loss of Hand Dexterity and Coordination
    • Memory and Mutliple Sclerosis
    • Migraines
    • Numbness/Tingling/Altered Sensation
    • Nystagmus and Oscillopsia
    • Pain
    • Sexual Dysfunction
    • Sleep Issues
    • Spasticity/Spasms/Cramps
    • Speech/Swallowing
    • Urination/Bowel Problems
    • Vision
  • MS Clinics
  • MS Topics
    • Pregnancy and Infertility
    • Caregivers and Family Members
    • Employment and MS
    • Medical Costs and Insurance
    • Pediatric Multiple Sclerosis
  • Register With Us
  • Terms of Use/Privacy/HIPAA
  • MS HealthCare Journey