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  • ams328
    Hi -

    I've had some changes in my symptoms and my MRIs have showed some new lesions.  When I discussed with my neurologist, she said it seemed like my MS was "progressing."  We're working on figuring out a new treatment plan, but I was wondering if anyone else has been told this.

    Here's the quick overview: In the spring, as I started training for a race, I noticed that I was experiencing what I assumed was foot drop.  I had always had some spasticity in that leg, and I knew those were connected.  I got a MRI of the thorasic spine, physical therapy, and some custom orthotics to help reduce the problem.  It was great and my symptoms mostly went away.

    In the fall, I started having new symptoms in my other leg.  Weakness, tingling, etc.  My new symptoms didn't fit the standard definition of a relapse as they didn't last for a full 24 hours (just intermitantly for weeks now), and they developed while I had a slight cold.  The cold went away, but the symptoms didn't.  This prompted a new MRI of the thorasic spine, and the discussion about my symptoms progressing - as there was no new lesions between the spring and the fall MRIs.

    Does anyone know what the difference between progression and a relapse?  What does it mean to have progression without a relapse?  At what point should I start having conversations about PPMS vs. RRMS?  

    I'm not terribly worried yet, but these are things on my mind that I can't find any answers to on the internet.  Thanks!
  • maria1
    You may want to call the Natl MS Society to speak with an ms navigator about the fine detail between relapse and progression. 

    Treatment options ought be the first discussion. Training for a race is a good reason to aggrivate nerves. Without new leisons or ms activity on the brain makes it probably a symptom brought on by not giving the nerves time to rest(my own words based upon my experience not facts  to back it up). Alpha lipoic acid 600 mg daily helps control the free radicals and that will help you feel better.

    There are supplements that help us all, are you taking any, how long have you had ms, how much stress in your life, how are you managing the stress, are you keeping your mind calm and relaxing your muscles sometimes, overstressed muscles make for more activity of symptoms.

     
  • ams328
    Hi Maria -

    I'm taking tumeric and an organ complex as supplements, along with a multi-vitamin and 5,000IU of vitamin D daily.  I was diagnosed about three and a half years ago.

    I'd like to think that I'm managing my stress well, and making time for yoga and other exercises that are good for both physical and mental health (swimming in particular).  I could probably do a  better job.

    What other supplements do you take?
  • maria1
    B12 twice a week
    D3 10,000 daily or enough to get 50,000 weekly
    ALPHA LIPOIC ACID 600 mg daily -- this has made a change in everything, energy, alertness though not much for short term memory but I have moved to spms and am old so that may not be ms related, giggle. The doc said C 500 daily as well as E 400 daily. C gives me indegestion.

    I also take tumeric and find it beneficial.

    Alcohol and tobacco have negative effects on ms wellness.

    Swimming is wonderful, I dream about swimming, that is grand by my standard, hooray for swimming. 

    Finding every excuse to laugh and be happy should be a life goal, yeah, the sky is falling, but I have an umbrella. Balancing the pluses and minuses helps maintain wellness and keeps the nerves relaxed. 

     
  • MS_Navigators
    Hello ams328,

    As Maria said - you are welcome to call us and we would be happy to help. Our number is 1.800.344.4867. 

    This link on our website does a good job at explaining the four disease courses and the different types of disease activity that can occur over time. It is important to remember that everyone's disease course can look a little different, but the link above provides more detailed information about the terminology you are asking about. 

    I hope it is helpful.

    Best,
    Stephanie, MS Navigator