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  • jenlric
    Hey Everyone

       So this is my first post on any website forum about MS but I figured it might be the best place for suggestions or answers. I visited my neurologist recently and he said as my MRI concerns him that I should consider taking medication for my MS to stop future attacks. Now I'm more of a person who doesn't want to take meds if they aren't needed. Is it worth it?  Or will the side effects be worse than attacks. And the cost, he said I'll qualify for a drug plan but I still don't know how much I'll have to fork out. Does anyone have success with alternative treatments that they can share? 
  • klg-123
    This is a good forum to be on! The MS Society has a lot of great info to help you to make your decision. For me, my next step after being diagnosed by a neurologist was to make an appointment with an MS Specialist. I wanted an expert to give me a second opinion to make sure it really was MS - and it was. I started treatment immediately. My doctors and all of the literature I have read all say that medication is the only way to slow the disease and hopefully prevent relapses. I chose to believe them - partly because I was scared not to and partly because I did a lot of research that seemed to back all the doctors told me. I  have been on Tecfidera for 4 years and I have not had a relapse since I have been on medication, no new lesions, no active lesions, and my bloodwork has remained normal. So for me, medication has been the right choice. Yes, there were side effects and they were not pleasant at first. But, by the end of the second month, the side effects stopped as my body adjusted to the medication. As for the cost, I have very good insurance and I only pay $25/month co-pay. I know Biogen has a program to help patients and if they qualify, some get it free.
    I know this is a scary diagnosis. I know the medication literature is scary. I know the randomness and inability to predict how this disease will affect you is scary. I spent the first 8 months being scared and anxious and not able to think about anything else. I have not tried any alternative treatments, so I cannot speak to that question. I cannot advise you to take medication or to not take medication - that is completely up to you and I will never tell anyone what they should do with regards to that. My only advice is to get a second opinion - preferably with an MS Specialist if possible - and do some research on reliable websites (the MS Society can help with that). The book "MS for Dummies" was a huge help to me as well. Once you have some information, it may make your decision easier. Best of luck to you and feel free to ask any questions.
     
  • jenlric
    Thank you for the advice 
  • jasonprestovfd
    Jenlric,
    the medications are like MS, what I mean is they affect everyone differently. Someone may recommend what they are taking because they have no side effects, but the side effects may affect you.
    Nobody can answer this for you, you need to decide what you think will work for you. 
    Ok heres what I can tell you about what I've tried and what has or hasn't worked for me. 
    I started having symptoms in 2010 and after a year I got my diagnosis of MS in 2011. I started taking Avanox and had no side effects until year number 4. It took me a while to make the connection that it was my medication. My neurologist actually figured it out at my regular 6 month appointment. I did not realize it was side effects because I never had any issues with the medication before. Because of the side effects and weakness starting on me entire left side, I changed medications.
    I've been taking tysabri every 4 weeks ever since. I have had zero side effects. Thru the years of both medications I have had NO new lesions. But my MS has progressed some. The left side weakness is slowly getting worse no matter what I do. Recently I tried Ampyra (aka the MS walking pill). It did make a difference with my leg and I even stopped dragging my foot. But it came with side effects.  I could deal with the heart burn, constipation, and diarrhea. The side effect that made me stop taking it was the extreme lower back pain. You can read my story to see what I've gone through with my back. 
    sometimes you just need to try something to see it it works for you. 
    I truly believe if it wasn't for the medications I could have never continued to serve as a firefighter for my community. But unfortunately MS is a long and hard road. I stepped down from my fire command position at the end of last year due to the progression of my MS. But at least I was able to continue to do something for years even though I have MS. 
    My advice is try one that you think will fit into your life. If you have side effects that are bad. Then try one of the other options. 
    as far as the financial side of it, I have found that the ones I've used have had assistant programs that make it affordable. 
    good luck and hopefully you find something that works for you. 
    Keep us posted 
  • golgotha
    Sorry, long answer. First, let me make sure I've got the question right:

    So you're asking whether you should go on a DMT or not, right? The DMTs are essentially immuno-suppressants to stomp down our immune system -- a seemingly dumb idea from a common-sense perspective. (I lean towards a natural, no-medicine mindset.)

    Okay, you asked, but please allow me to use me as your example.

    I had what I now know was MS symptoms in my late-teens or early 20s. My first major attack was in 86-87 and I was diagnosed then when I was 26 or 27. It was a butt-kicking first attack, hitting multiple systems and a wide swath of symptoms/issues.

    Luckily, I had decent health care and after the diagnosis was made it was recommended I do experimental chemotherapy. No way, I said.

    I dropped out of the conventional medical scene. At that time there essentially were no treatments or DMTs, so I wasn't missing much.

    I tried various natural alternative treatments, learned I loved honeybees from Bee Venom Therapy, all sorts of diets (and IMO diet is important, but it's no cure-all), etc.

    Now having lived with MS for 30+ years, I like to think I've learned a bit. It is thought (just a theory) that the disease is always progressing/advancing -- getting worse even though you cannot detect it yourself. If that theory is correct, it strongly supports the DMT idea of doing something to slow the disease progression down.

    The science of MS strongly screams that you should get on a DMT. My sad guess (hope I'm wrong) is that your MS will worsen to a point where you'll want to get on a DMT and might regret not getting on one earlier. For an idea of such regret watch some of this woman's videos and also her description of her mother's death (her mother also had MS back in the day when there were no treatments).

    Again, sorry for the length and also if I came off too strident, but this is an important topic.

    Regarding alternative treatments, I would say unless you want to become a beekeeper (it's a cool hobby!) don't bother with Bee Venom Therapy.

    Medical marijuana does help with some symptoms (and different weed strains impact different symptoms) but it's no cure-all. And I'd recommend not smoking weed (use oils, edibles, topicals, etc.) since smoking speeds up the progression of MS by a large amount.

    But diet is a key. There are a number of MS-specific diets, and I'd recommend putting some thought/effort/focus into that area. About the only other "alternative" treatment I've found is the 4 for 4 idea (that doctor has a bunch of videos online; highly recommended).

    Another "alternative" therapy I'd recommend is to avoid stress and learn how to rethink and react differently to stress -- that's one that's underrated IMO.

    But if you do find an alternative that works, please don't forget to let me know!
  • maria1
    jenlric, You  already have some very sound advice and my big mouth wants to add it's two cents. I noticed changes when I was 16 and began to go blind when I was 23, that was in the early 1970s before any dmds and no one told me it was ms but gave me steroid pills.

    More than twenty years later(with mishaps inbetween that I attributed to other things) I became totally incapicated, blind, couldnt walk, couldnt think was in so much pain all the time, I was so miserable I would try anything - lucky? for me the I got into the betaseron lottery and was among the first to receive the drug. Then, between the disease being super active and the drug being introduced into my system I was still so sick for years, and I had no insurance, at the time the drug was $800.00 a month , so my partner  retired early and we moved from the east coast to a farm in Missouri, we for sure knew I was dying. There was nothing there cept cows, no close neighbors, no noise, no family, no friends, nothing but sky, hay and cows, nothing to stress about.

    Here it is twenty two years later and I am on no drug for ms because there is none that can do anything for me, the disease is progressing.

    What I find significant is my thought modification which has given me a road to peace, yeah I do still on occasion get upset, but mosly I spend my days looking for ways to make me laugh. And I focus on keeping my muscles supple, or soft, to make sure they are not going into spasm, muscle relaxing techniques have gotten me to notice when I make my muscles rigid to aggrivate the nerves.  How I handle every crisis is important to maintain my well being as the disease moves on. Being calm all the time is relevant to not annoy the nerves.

    Anything that delays waking the monster ms is what you have to learn for you. Ayurvedic principles work in balancing the body chemistry. Vitamin D3, Alpha Lipoic Acid, and probiotics have worked for me as well as not eating junk, not smoking, not drinking, not having kids.

    We will never know if the dmd worked for me except I am still ambulatory, still relatively thinking, have some use of my hands and arms, can no longer drive nor handle cash, do mess up my checking and charge accounts, break things, and ruin machinery regularily. Most of us with ms have other ailments, me included, because our immune systems are messed up. No matter what you choose for treating ms, focus on a quiet mind and soft muscles - all the time - to help delay the worst ms has to offer. maria
  • jenlric
    Thanks for the input 🙂
  • Rich1007
    Hi Jenlric,

    Suggest you watch this MS doctor's videos:
    https://www.youtube.com/watch?v=TxmDMUVaK-4&list=PL3a4GpjWLtChDEwFqBBgvnMnQIPqGTb2D&index=12&t=0s

     
  • maria1
    Do you feel, think, believe, hope, or wonder if a dmd will slow the progression of the disease? Every exaserbation poses the potential for damaging organs, some of the damage is reversable some is not, preventing an exaserbation is the goal we all strive for, so whatever you think,, feel, believe, hope or wonder will help achieve that goal is worth investigating.
  • lillivonshtupp
    Hello, So I don’t know where u live but u might want to get tested for Lyme disease. I did & am very confident that’s causing my MS. I treated Lyme and was stable for 7 years. The symptom pictures are identical and neurologists are just recently figuring this out. 
    If you test negative you still might have Lyme, they haven’t perfected things yet. However, I avoid taking meds as much as I can. Diet & yoga can only do...a lot really, they are really great! But I had a bad relapse last month & am getting in Galinia soon. B/c not taking medicine can cause more trouble too. Unfortunately every single MS case is different & no one has the answers. At least the meds are not all injections anymore, that really sucked. I hope the best for you!
    Namaste