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  • rblackman
    Hello all! So I was diagnosed on April 30, 2018 and was put on medication in Mid-June. Since then I have started my now 3rd medication due to being allergic to the first two. I now fell I may be allergic to this one but may not know yet until next week when I do my first full injection. So here it is; I just want to know is there anyone here that has not been on medication for a long time and functions fine without it, and if so what do you do to keep symptoms bay. 
  • Summer1
    What medications are you allergic to?
  • rblackman
    I am allergic to Copaxone; started to break out in hives
    Tecfidera; ended up getting a really bad rash after only 3 days of being on the low does

    I am now taking avonex and did the 3rd injection which was 3/4 of the full dose and noticed a hive last night; but wont jump saying that i am allergic until i do the first full dose next week.
  • Summer1
    Did you suddenly become allergic to copaxone? Or since the beginning did you get the allergic reaction? I used copaxone for about 2 years and was doing great! Then generic copaxone for about 8 months and last 2 injections I've had flushing and redness all over my face and body. I'm terrified to think that I some how became allergic to it because it's been working for me. I have no relapses at all!!!! I hope its just a side effect that will not happen again. Good Luck on your new medication, I hope it works for you! 
  • rblackman
    It was very odd, i had started it in June and was completely fine until about 6 months later i started to break out in hives. My doctor instructed me to take half the doseage to see if it was better, however the hives still appeared and he instructed me to come off completely. I never had any flushing with the copaxone. Just the injection site reactions. 
  • drcxo
    Hello!
    When I was newly diagnosed a little over 4 years ago, I was prescribed Avonex which I took for about a month and stopped because I could not stand the flu-like symptoms I was getting when I took it which was once a week. Since then I have not taken any other medication for it and instead took the holistic approach. I have recently started using cannabis for it which I noticed helps with my walking, stress, anxiety, depression and overall helps me relax and stay focused.  I have tried/currently am doing (not consistently) acupuncture, cryotherapy, massage therapy, chiropractic therapy, physcal therapy, electrotherapy, diet, exercise etc. I hope this helps!! I wish you the best of luck in finding some relief!
  • mkaymkaymkay
    April 26th here, so I share your just diagnosed experienced at the end of April. Ruined spring and summer for me. However, i too started treatment in june, Tysabri. With all the side effects and risks I was terrified so I reached out to people who take it on instagram. I DMd them, almost all replied. I havent had any symptoms since my second or third infusion, it’s a once a month iv. You might like to discuss it with your neurologist. 

    When it comes to no treatments or natural life style changes, I have been advised in person by a professor who was diagnosed with MS and over 20 lesions but completely reversed it (my neuro says its impossible but I still believe that proff and remain hopeful). She said she avoided medications and just took supplements and took control of her own life. Now, my life has been a roller coaster of emotions and problems since my diagnosis but I do intend to give it my best shot after I graduate. I wish you to find the right treatment for you, cause I found a peace of mind with Tysabri when it worked for me. Hope it always works for me cause I’m very lazy and get bored with exercise easily🀦🏼‍♀️

    I was suggested:

    Overcoming MS (book)
    Walhs - mitochondria (youtube video) 
    China study diet (it’s a reading)
    Carlson vitamin d drop/ 4000 or higher doses
    B complex pills (i take the kirkland brand)
    B12 shot
    flaxseed oil 2 tablespoons a day
    15 mins sunlight daily
    meditation
    yoga
    exercise 3x a week
    avocado, fish, healthy & clean eating if you can

     

  • golgotha
    I have been advised in person by a professor who was diagnosed with MS and over 20 lesions but completely reversed it (my neuro says its impossible but I still believe that proff and remain hopeful).


    A nice story, but purely anecdotal. Who is this marvel? Has he written about his success; any way to contact him? TIA.

    To your reading list I'd definitely add the "Grain Brain" book. IMO a strong recommendation for anyone with MS. (Links: the author's site, Amazon to check what others say about it.)
  • mkaymkaymkay
    @golgotha

    i was taking her class at the time of my diagnosis, when she was covering the topic of neurological diseases & demyelination and told us her experience. At the time i thought to myself “damn, i hope they find a cure for demyelination.” Ironically while I said that it was happening in my own system, three weeks later i was admitted to the ER and was diagnosed with MS in a day. No, she hasnt written books. She has served in the army so she has a great deal of self control, strictness (one of the most difficult professors i’ve ever had) and she loves research and studies so I don’t doubt her experiences at all. She found a neurologist she likes that supported her wishes against agressive treatments and together worked on and tracked her progress. She still has MRIs and routine check ups done. She told me to relax, don’t stress, educate yourself about everything that’s available to you and about the disease, join support groups, try to live a healthy lifestyle and to go to multiple neurologists to find the one that I like. Just sitting with her and talking about everything made me collect myself, and that was the day after I was discharged from the hospital. So i was in that just diagnosed, shocked, angry, grief & denial stage at the time. I owe my positive attitude about this disease to her because I was inspired and determined.
  • golgotha
    I just want to know is there anyone here that has not been on medication for a long time and functions fine without it, and if so what do you do to keep symptoms bay.


    I was diagnosed in the late 80s, the stone age of MS, so to speak. Some neurologists thought MS was viral and suggested strong anti-virals, others thought auto-immune; very few drugs available and it was recommended I try experimental chemotherapy -- not what I wanted to hear.

    About at that time I checked out of the conventional medicine scene and thought, "Physician, heal thy self." So I spent about 15 years with no treatment, having no major attacks (not like my first one!), some minor ones and varying symptoms. During that time I tried all sorts of alternative treatments and ideas, but in hindsight I'd chalk my "success" up to luck, low stress, and a healthy diet of sorts.

    A later attack and the fact that I found no cure in the alternative world pushed me back into the conventional medical arena. In my "time away" there are more drugs available, but IMO a shocking lack of actual progress in finding out what causes the disease and/or how the brain actually works.

    My advice to you would be to realize you do have this disease, and it isn't going away -- it's going to get worse. Therefore, IMO, you should learn about it. Since I have a computer science background and like and listen to numbers, the course of the disease is better if you do a DMD/DMT. And as the videos in that link will advise, try to get on the best (not the cheapest, which is what many insurance companies will try to do) medicine you can get. FWIW.
  • waltzing_matilda

    No one can tell you what is going to happen in the future.  This disease doesn't effect everyone the same way.  Some people have a benign disease course.  Most don't.  No one knows why.  They don't know how the disease works and they don't know how to stop it.  What you do is up to you.  You certainly have the right to refuse to try a sucession of DMDs.  The drugs are a crapshoot anyway.  What works for someone else may not work for you.  There is no way to know whether or not a drug is working.  We can see the effects on the body, but there is no way to determine whether a drug is working for a specific individual.  Efficacy of these drugs is measured by evaluating relapses in a population.  You're not a statistic.  Youre a person.

    The probability of having an exaccerbation is higher if you don't take a DMD. Some people who are not on the drugs do fine.  They're just lucky. It's a gamble.  Are you willing to gamble?

    My suggestion to you would be to do everything in your power to be as healthy as possible.  Exercise.  Don't eat garbage.  Do what you can to limit your stress.  That one is REALLY important.  Talk to your neurologist and get second opinions when needed.  There are a lot of drugs out there.  Maybe you can tolerate one of them.


     

  • Chrissyny
    I’m not a ,doctor, but this is your body telling you that what’s going in your body is foreign substance πŸ˜‚and rejecting it.
    consider speaking to a naturalist- possibly they can help you with some things that your body is in need (vitamins/minerals/water)and also if there are other things possibly that you may be allergic to or sensitive to (yeast producing foods,sugar and other stuff-dairy)  no cure for MS but possibly to prevent flareups or inflammation things of the nature. Don’t get caught up with all these fad diets (there is no DIET) and things you see on Facebook, same thing that your doctor tells you they don’t know half the stuff about nutrition, doctors only give you science and whatever the drug sales rep of their meds that they represent.  I think of people with MS, to follow a diet, is not too smart. You might be cutting out things that you actually need especially like for energy and stuff. 
    I’ve learned a tremendous amount from my acupuncturist and my chiropractor who does food sensitivities and check for lack of vitamins/minerals.  Knowledge is key.
     don’t bombard yourself though, take it in a little bit at a time. ❀️✌🏼😊❀️✌🏼😊❀️✌🏼😊
     you can do this ❀️✌🏼😊one little thing at a time OK. Good luck ❀️✌🏼😊