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!

Should I Be On Medication For My Multiple Sclerosis?

3/22/2015

 
Question:
MS has been a part of my life for 28 years. I have tried numerous medications - Copaxone, Gilenya, Tecfidera, Tysabri, Immuran, and, most recently, Plegridy. And had adverse reactions to each. Some more severe than others. I have RR MS, am still mobile and active but have noticed a little more progression of late with some symptoms. Is there a common denominator with MS drugs that may be the root of these reactions. I feel as if I am playing Russian Roulette not taking some medication, but feel the same way with each new nedication. Help! Thank you.

Answer:
I hope that by the time you finish reading my response to your question, you will realize that "Russian Roulette" is a very bad analogy for your predicament. 

While I do not know all the details of your case, I do know the natural history of MS and can provide a framework for your consideration.

If you are a typical MS patient with relapsing MS for 28 years, you should be a woman somewhere between the age of 50 and 65. I will also assume that you have few other physical or mental problems for the purposes of my comments ,since additional health concerns can significantly affect your functional status.

The median time from onset of MS (your first symptoms) to the development of secondary progressive MS is approximately 20 years in most modern natural history studies (Lyon France 1976-1997: British Columbia 1980-2003; and Lorraine France 1996-2003). This means that you are doing way better than the average MS patient if you have relapsing MS after 28 years. In the London Ontario natural history study, 80 % of patients with a relapsing onset were classified as progressive disease within 20 years of onset. Again this would indicate that you are doing very well indeed. 

Since the point at which a person develops progressive disease is often unclear, we often look to these natural history studies to tell us when people with MS tend to reach certain disability milestones. A common milestone for this purpose is the point at which a person requires at least a cane to walk and never improves again to walking without at least a cane. Now many people use canes for safety and reassurance, but for the purposes of this definition we are literally talking about people who can not walk the length of a football field without a cane.  All of these natural history studies indicate that the median time to requiring a cane for walking ranges from 23 to 30 years after onset of MS symptoms. By this definition you are also doing very well.

Now why is this information important to you in your decision about treatments? First, you already know you are doing considerably better that the average patient. You state you are still mobile and active. This indicates that your Expanded Disability Scale Score is probably no greater than 3.0. If this is the case you are doing better than at least 80 % of other people with MS and may never develop significant disability. If this is the case, you may never require disease modifying therapy.

Why then are your symptoms worsening? Without knowing the details, I can not answer this question, but it is quite possible (based on the information provided and discussed above) that your increase in symptoms is NOT related to disease progression. The increase in symptoms could be related to other conditions (mental and physical), medications, deconditioning or simply the combination of normal aging on top of a brain already affected by MS. 

I suspect it is time to take a more holistic view of your overall condition and take a complementary approach to management that may or may not involve a disease modifying therapy. Discuss this with your MS specialist and feel free to share more of the details of your condition.

Revere Kinkel MD
Director of the UCSD Multiple Sclerosis Program

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

    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