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    • #19805
      Ed Tobias
      Keymaster

      Nah, not tempted. As I heard a researcher say the other day, “mice lie and monkeys exaggerate.” On the other hand, one of my favorite songs is “Peel me a Grape.”  https://youtu.be/n7Uc3q346VU

    • #19791
      Ed Tobias
      Keymaster

      Hi –

       

      You might take a look here: https://www.nationalmssociety.org/Resources-Support/Find-Doctors-Resources

      Look for an MS specialist, rather than just a general neurologist.

      Good luck,

      Ed

       

    • #19530
      Ed Tobias
      Keymaster

      Adding to what Jenn has written, the MS International Federation has issued guidelines regarding treatment with the various disease-modifying medications in the current situation. Continuing treatment really depends on the way in which the medication effects the immune system. Here’s part of what the Federation’s website says:

      People with MS who are currently taking alemtuzumab, cladribine, ocrelizumab, rituximab, fingolimod, dimethyl fumarate, teriflunomide or siponimod and are living in a community with a COVID-19 outbreak should isolate as much as possible to reduce their risk of infection.

      Ocrelizumab is the generic name for Ocrevus. Here’s a link to the full web page: https://www.msif.org/news/2020/02/10/the-coronavirus-and-ms-what-you-need-to-know/

      Hope this helps,

      Ed

    • #19439
      Ed Tobias
      Keymaster

      Your understanding is pretty close to mine, Dennis. Thanks for sharing.

      Ed

    • #19437
      Ed Tobias
      Keymaster

      Hi Wanda,

      I think you’ve read a column that was posted today by Wanda Towler. I read that column and had the same reaction.

      My neuro has always told me that MS makes my immune system overactive. She uses the word “supercharged.” I disagree with the idea that it’s the opposite and I’ve found nothing written that would support it.

      Wanda is a columnist, not a news writer, and we columnists are writing about our own experiences. This, obviously, has been hers.

      There’s a way to make a comment directly following all of our columns. Have you commented directly to her to ask about this?

      Ed

    • #19354
      Ed Tobias
      Keymaster

      Lorraine,

      In the far right column of any page, under where it says “Hi (your name),” click “profile.”

      On your “profile” page click the “messages” tab. That will take you to the message form.

      Let me know if you run into any problems.

      Ed

       

    • #19351
      Ed Tobias
      Keymaster

      Hi Ellen,

      I’m not a medical professional so I’m not in a position to tell you whether or not your Vitamin D intake should be a concern. I can tell you, however, that I’m also 71 and, with the blessing of my neuro and my PCP, I’ve been taking Vitamin D3 at around 2,000 IU a day for a long time. I’ve been taking calcium for the same length of time. Seems to work for me.

      Ed

    • #19310
      Ed Tobias
      Keymaster

      John,

      I wouldn’t lower your dose unless it’s super high.

      The dose given to the mice with simulated MS, was 75,000 units. That’s far higher than the dose that any person with MS that I know is taking. When the mice were given 1,500 units, which is similar to the 2,000 units that I’ve been taking each day for years, it proved to be beneficial. I’m about to run out of my Vitamin D and I’m getting ready to buy more.

      Everyone needs to read past the headlines.

      Ed

    • #19309
      Ed Tobias
      Keymaster

      Hi Tom,

      The points you raise are excellent. I’m on Lemtrada and am protecting myself just as I would against standard influenza…hand washing, avoiding sick people, etc. Here in the U.S., through the first 7 weeks of flu season, 29 MILLION people have been treated for the flu, 280,000 have been hospitalized and there have been 16,000 flu-related deaths. Hard to believe, but those numbers come directly from the US Centers for Disease Control.

      I’ve reached out to the Consortium of MS Centers to ask if they’ve provided me with any info, yet. Below is the most comprehensive and logical advice that I’ve read about the COVID-19 coronavirus. It was shared with me by a Facebook friend.

      Also, here’s a link to a post on the BARTS MS blog which directly addresses your question about DMTs. https://multiple-sclerosis-research.org/2020/03/covid-19-and-dmts/

      Ed

      This from a pathologist in San Diego:

      Subject: What I am doing for the upcoming COVID-19 (coronavirus) pandemic

      Dear Colleagues, as some of you may recall, when I was a professor of pathology at the University of California San Diego, I was one of the first molecular virologists in the world to work on coronaviruses (the 1970s). I was the first to demonstrate the number of genes the virus contained. Since then, I have kept up with the coronavirus field and its multiple clinical transfers into the human population (e.g., SARS, MERS), from different animal sources. The current projections for its expansion in the US are only probable, due to continued insufficient worldwide data, but it is most likely to be widespread in the US by mid to late March and April.

      Here is what I have done and the precautions that I take and will take. These are the same precautions I currently use during our influenza seasons, except for the mask and gloves.:
      1) NO HANDSHAKING! Use a fist bump, slight bow, elbow bump, etc.
      2) Use ONLY your knuckle to touch light switches. elevator buttons, etc.. Lift the gasoline dispenser with a paper towel or use a disposable glove.
      3) Open doors with your closed fist or hip – do not grasp the handle with your hand, unless there is no other way to open the door. Especially important on bathroom and post office/commercial doors.
      4) Use disinfectant wipes at the stores when they are available, including wiping the handle and child seat in grocery carts.
      5) Wash your hands with soap for 10-20 seconds and/or use a greater than 60% alcohol-based hand sanitizer whenever you return home from ANY activity that involves locations where other people have been.
      6) Keep a bottle of sanitizer available at each of your home’s entrances. AND in your car for use after getting gas or touching other contaminated objects when you can’t immediately wash your hands.
      7) If possible, cough or sneeze into a disposable tissue and discard. Use your elbow only if you have to. The clothing on your elbow will contain infectious virus that can be passed on for up to a week or more!

      What I have stocked in preparation for the pandemic spread to the US:

      1) Latex or nitrile latex disposable gloves for use when going shopping, using the gasoline pump, and all other outside activity when you come in contact with contaminated areas.

      Note: This virus is spread in large droplets by coughing and sneezing. This means that the air will not infect you! BUT all the surfaces where these droplets land are infectious for about a week on average – everything that is associated with infected people will be contaminated and potentially infectious. The virus is on surfaces and you will not be infected unless your unprotected face is directly coughed or sneezed upon. This virus only has cell receptors for lung cells (it only infects your lungs) The only way for the virus to infect you is through your nose or mouth via your hands or an infected cough or sneeze onto or into your nose or mouth.

      2) Stock up now with disposable surgical masks and use them to prevent you from touching your nose and/or mouth (We touch our nose/mouth 90X/day without knowing it!). This is the only way this virus can infect you – it is lung-specific. The mask will not prevent the virus in a direct sneeze from getting into your nose or mouth – it is only to keep you from touching your nose or mouth.

      3) Stock up now with hand sanitizers and latex/nitrile gloves (get the appropriate sizes for your family). The hand sanitizers must be alcohol-based and greater than 60% alcohol to be effective.

      4) Stock up now with zinc lozenges. These lozenges have been proven to be effective in blocking coronavi

      rus (and most other viruses) from multiplying in your throat and nasopharynx. Use as directed several times each day when you begin to feel ANY “cold-like” symptoms beginning. It is best to lie down and let the lozenge dissolve in the back of your throat and nasopharynx. Cold-Eeze lozenges is one brand available, but there are other brands available.

      Good luck to all of us!

      James Robb, MD FCAP

    • #19302
      Ed Tobias
      Keymaster

      Just to be clear….Kevin is referring to the survey only being available for U.S. users, not to Copaxone. Copaxone is most definitely approved for use outside of the U.S. :-).

    • #19279
      Ed Tobias
      Keymaster

      I’m with you on this, John. In my column for this Friday (Feb. 28) I’ll be writing about how I think that Invisible Disease Day is more appropriate for MS than Rare Disease Day.

    • #19201
      Ed Tobias
      Keymaster

      Lana,

      I’m 71 years old and have lived with MS since 1980. I’m coming up on being two years past my second round of Lemtrada and it’s worked well for me….no disease progression and a few symptoms have improved a little. The side effects have been minimal.

      I write occasionally write about my Lemtrada journey in my column, The MS Wire. Here’s my most recent piece. I hope it interests you.

      Ed

      My Lemtrada Journey: Observations at 18 Months After Round 2

    • #19161
      Ed Tobias
      Keymaster

      LuAnn,

      Fatigue is a very common symptom of MS. There are medications, such as Provigil, that can be prescribed to help. Lightheadedness can also be a symptom. Have you talked to your neurologist about these problems?

      Ed

    • #19160
      Ed Tobias
      Keymaster

      LuAnn,

      How much did you use and how long did you try the CBD before you gave up?

      Ed

    • #19155
      Ed Tobias
      Keymaster

      RJ

      That’s a nice thought. I think I’d just simply run. I do that in my dreams, sometimes. It would really feel good to do it again for the first time in many, many years

      Ed

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