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MS Fatigue; Common but NO DRUGS APPROVED!

This really steams me. I've been struggling with this horrid disease since 1996, finally diagnosed in 2003, and have been repeatedly told that one of the most common symptoms is fatigue. Yet any of the drugs available to help with this very serious symptom is not approved for MS. In fact there are none approved. Even if one helps you, insurance won't pay for it and even if your doctor protests, they still won't pay for the drugs. That means not one is available for MS.

That means more problems, forget about working, trying to keep up with your own life, or keeping a sunny hopeful attitude, when you are exhausted, all seems bleak, and I dare one more perky health professional to tell me to exercise to overcome it!

What troubles me is why haven't we demanded approval of these drugs so insurance will cover them? God knows we are tapped out paying for drugs that might or might not delay more of our eminent disability. Saddled with tests and physical therapy and therapy of all sorts when a lot could just be helped by having the energy for living. Is anyone listening?
Because I don't have the energy or will to repeat myself.

  1. I know exactly what you are talking about since my most bothersome symptom is chronic fatigue.I work full time and I patties it dearly every weekend not to mention during the week as well.I feel if I hear go get out and enjoy the beautiful weather one more time ,I am going to scream! If only it was that simple. It took years for me to be diagnosed as well.I started having symptoms around 2008 and it took until 2015 for a diagnosis of RRMS.Unfortunately,I don't have good days at all anymore so I feel that it has progressed.I have symptoms everyday and they don't remit. I have recently started having numbness and tingling in my right arm that doesn't seem to go away.I used to be bouncing off the wall with energy before my diagnosis. My house was cleaned every weekend. That's in the past now. Tasks that I used to take for granted are no more .for me. Sorry to sound so down but I guess that I am today. People do not understand our fatigue so I have quit trying to explain.I am sorry that you are having such terrible fatigue. MS sucks!!

    1. Yes, it does suck and I'm glad you say you are having a down day cuz yes, we're the only one who can choose a different mindset. No really, I have MS, also Diabetes and bipolar so each morning is a fight for me to find joy. It's hard to look back at things we USED to do and realize that we cannot ever do those things again. I have been trying to find purpose in what I CAN do versus what I can't. My faith in God is my go to when all seems impossible. Actually it needs to be the first thing I do , cry out to God. Only by His grace do I make it thru many days. Fatigue is one symptom we all seem to have, then there's A myriad of other things that may be different than someone else's. That's why it's called a Snowflake disease cuz no two diagnoses are the same.

  2. I started doses of THC and CBD (Medical Marijuana). It has thus far provided me with incredible results.

    I will have to open up a different thread to speak specifics about me, my condition, and results of my new treatment. I just need a bit more time to make sure what had healed doesn't come back. I had my hopes high many times before only to find myself in the same mental and physical state later.

    Spend a little time researching "Potential Uses Of THC & CBC". The NY State approved patient education packet I received at my initial consultation at the dispensary specifically lists many, if not most of my MS side effects. Although Fatigue is not yet specifically mentioned, what can contribute to fatigue in some persons are officially listed.
    Anxiety Issues---Nerve Pains---Nausea---Muscle Relaxation Issues.

    Fatigue may be described differently by each individual with MS.

    I believe we all reach a moment in our lives and realize the answers to all our issues will not come from a physician. You have to go out and discover what works for you.

    If anybody ever wants to exchange email or have questions for me, if i catch the email i will respond. I'm trying to be more social and hope to post more often to this community. Tmarkovina@clinical-it.com

    Tony

    1. May or may not be approved but my doc perscribes Amantadine for my fatigue and my insurance pays for it. But my insurance pays for my copaxone too. But anyway you look at it ms fatigue sucks. Amantadine isnt perfect but it does help.

      1. What is Amantadine? Maybe I need that!! My insurance pats for my Copaxone, but having Medicare, my co-pay is about $500, so thankfully I have co-payment assisance to help with that!

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