[symposium-forum cat=”1″]

17 comments

  1. Patti says:

    I would’ve loved good information about cannabis especially nfo inr information about types of cannabis, what each variety of the plant is good Darius symptoms and also combinations such as how much CBD compared to THC and also about doses. I love the idea that you are doing this and I would be happy to be part of a survey or whatever could be helpful. Thanks so much, Patti

  2. Grace Barrios says:

    Hi, I am a 66 year ald Mexican ladY. I have had SLE ever since I was 3 years old: doctors never suspected it. My immunity loss has been a huge problem all throughout my life.

    I have been ordered by my doctor rheumatologist that I should get a stem cells transplant into my spinal bone marrow, as soon as I was able to get rid of germs, parasites and candida albicans.

    When I was 12, my thyroid gland was destroyed due to Hashimoto´s disease. I had to surive depression as a 12 year older, which only puzzled my endocrinologist, he did not give me thyroid medication to see if my gland was able to recover eventually. He had no clue of Hashimoto´s disease.

    Thanks to searching through medical sites I have discovered the name of my executioner -Hashimoto´s disease- which turned a happy 12 year old beautiful girl into a fat and depressed teenager. It destroyed my adolescence. Only bright side is that I developed my own talent into a fantastic catharsis and wrote poetry and painted. Trying to turn ugly and dark into divine purity.

    I have also learned that Hashimoto´s disease makes it possible to acquire other autoimmune disease overlapped onto my already difficult SLE. Yet, I have 4 symptoms of MS, as decreased gray matter as has appeared in my multiple brain MRIs taken since I started my first of 3 meningiomas, in 2008.

    On my last 2017 brain MRI, white dots deep into white matter appear (this is new).
    And also, I have had numb feet, legs and arms and hands, since 2004, non-stop.

    My heap and most of my spine are oddly painful, I have muscle spasms and cramps. Sometimes I can walk, like a duck; sometimes, as a very painful clown (my hip killing me). I sleep in the living room, and going upstairs to take my shower is very dangerous and exhausting!

    Also, in this same 2017 brain MRI, it shows that my pituitary gland -already a partial empty sella syndrome since 2008, appearing displaced and flattened. Now, in July 2017, it appears compressed in a 70% due to excess cerebrospinal fluid. I have all kinds of hormonal problems; just like a mutant…!

    Me, I spent my husbands and my own old age savings, trying to find out what was wrong with me. Spent a lot in analysis and medications, in the desperate effort of trying to get rid of parasites and germs, and candida albicans. These latter I acquired at that the hospital in Spain, where my first brain surgery was performed. My British husband and I met, worked and lived in Spainfrom 2001 through 2010. After that I was more ill and was never able to work or to see the light.

    In the first surgery -craniectomy- I was sent out with 3 huge hospital resistant germs and candida albicans, hospital resistant too.

    The more I cure my parasites, I get a little better. I have a little more strenghth. Yet, they always come back…!

    I would love to participate in an MS clinical trial, as I assume I am a perfect sample of autoimmune diseases. Mainly, I have never had any drugs prescribed to help SLE, such a cortisone, antimalarial drugs, or medical cannabis oil.

    I am offering myself to help for research. Thank you for the opportunity…!

  3. Joanne Gauthier-Wiebe says:

    As a cannabis user for almost 8 years now, I can say that I started seeing the real benefits of cannabis once I started using it daily. I can say that over the years my health has significantly improved, something that doesn’t usually happen with SPMS patients. My cane is now collecting dust in the corner. Cannabis helps with so many of the symptoms, it would be hard for me to say which one. I do believe it is keeping me walking and it should be considered like a vitamin, part of a daily health routine.

  4. Senator says:

    I believe that more info needs to get out about Ocrevus, as I still see a need for people to be asking their Docs about if it is viable for them. Also people on Ocrevus are thirsty for knowledge of how it is working for others.

  5. Brian Kipf says:

    58 yr male, diagnosed with PPMS 2 years ago. Started O last June with immediate improvement in fatigue and slight movement in left foot. I have had my first full infusion in December. I have stamina almost to point of pre-MS and an improvement from blurred vision. I haven’t gained use of my left side but I feel I am holding my own against the progression and looking forward to my next infusion in June.

  6. Planner says:

    Ocrevus was more costly and less effective than any disease modifying therapy I have used in over 12 years. I now experience greater levels of fatigue, imbalance and weakness than I did prior to Ocrevus therapy. It’s not a treatment that worked for me but, thankfully, it has worked for others.

  7. savy says:

    I started on Ocrevus about a year ago and have had a lot of success. This drug helped me tremendously. My vision is better, my fatigue is almost non existent and my nerve pain is almost completely gone. Im feeling so much better. I love this drug. I no longer think of my MS everyday. This is truly a miracle drug for me!
    Downside- I feel myself slipping about 5 months into it. So now I get my Ocrevus infusion at 5 months. I hope it works this well for everyone as it does me. So far, everyone i know personally have had good results

    Finally a drug that works for me. This drug was a game changer for me.

  8. Jim says:

    Just had first MRIs after six months of O and 1st full dose. Symptoms seem worse – balance, fatigue, etc. To my surprise my MRIs show no disease progression. Thoughts?

  9. Jessica says:

    Help! 34 year old, 2 yrs diagnosed with RRMS. Previously on Tysabri and although MRI was stable, symptoms accumulated. Started Ocrevus 3 weeks ago. Felt amazing after part 1 of Round 1 but after part 2, I currently feel HORRIBLE! 6 days post, migraines are worse, spasticity is worse, nerve is worse and joints are incredibly achy. I’v never been in so much pain with having symptoms all at once. I’ve been prescribed Tramadol to help with the pain and am just waiting for this pain to subside. I have 2 little ones and not much family help, working full time so it’s been a daily battle to find relief for the pain to be bearable enough to have a productive enough day. CBD oil and gabepentine have been no match for this pain either.

    • Jael says:

      Jessica, I started Ocrevus on a April 23 of 2018. I have also experience migraine headaches since starting the medication. I was initially given Topamax for the migraines. Although Topamax did to lessen the severity of the migraines over time, the side effects of the Topamax were numbness and tingling.

      It’s now October and I am still dealing with the migraines. I am scheduled to take my first full dose of Ocrevus in less than a week and I am very hesitant to take it.

  10. Chelle says:

    I have been on Ocrevus a little over a year, my third dose will be in March 2018, but I am reluctant about getting any more infusions. I feel like I have gotten worse by each infusion. I am fatigue, more spasms, very weak in both legs, and the numbness has spread to my foot. I have to use a cane now. I did not have to use a cane before starting on Ocrevus.

    I am glad to hear that it works for some people.

  11. Jessica says:

    I just had my first dose of O today. It was the half dose, next half dose is in 2 weeks. I was really scared. But I had absolutely NO reaction at all. They asked me if I was itchy or anything. Nothing. But I’ve been revved up, feeling great and almost manic since I left. Very weird. I couldn’t stay home so I went out and got things to cook for dinner, called a bunch of people, and I’m not sure I’ll sleep. But I love it. I haven’t had this much energy in years. And I have no pain. My cognitive functioning is so much better. Like before MS or Sjögrens Syndrome which I also have. And depression is better too. Bizarre but wonderful.

  12. Liz says:

    My sister is 49 yrs old. She was on Tecfidera before Ocrevus and liked it, she switched as her family suggested it. She has become increasingly weaker after 3 doses. She has not had a new MRI since she started. She had said this to her neurologist who has asked her to give it a chance. But she feels a lot worst. She has been wheelchair bound for years now, but now she’s way weaker, less use of her limbs, her spine is weaker, sometimes she cant even sit due to her weak back. She hates it but has been told by everyone to continue and see. How much longer? Til shes dead or a vegetable? Is it possible that some people have thos effect to this medication?

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