MS views and news discussion notes

MS views and news discussion notes

Id love to tell you I came out of yesterday’s round table discussion group enlightened with tons of new information, but I can’t. I unfortunately didn’t learn all that much. This is what I took away that I feel was note worthy.

  1. Dr. Krieger’s Leaky Pool analysis of MS. He created an app for an iPad and it’s only for an iPad. If you search for MS topography, you can download the app for free.                                                I can’t seem to open the app so I’m going to do my best to explain this. Imagine a pool with a shallow end and a deep end. A relapse is when the symptoms go above the surface level and can be seen. Most relapsing remitting occurs in the shallow end of the pool where real MS damage occurs in the deep end.  Below the surface level is the disease lesions that aren’t seen. To see those a doctor gets an MRI. When a person feels fine but the MRI shows a lot of lesions, it’s because the symptoms aren’t seen. On the reverse side, for someone like me, whose MRI has been stable for years but has continued to get worse, it’s because the pool is leaking and the water level is lower, the symptoms that were once below the surface are now above the surface. A doctor goal is to keep as much water in the pool as possible as well as keeping as much activity under the surface of the water quiet. I hope I did that explanation well. Sorry I couldn’t supply the pictures to support the concept but the app is available for free. Hopefully it works for someone else.
  2. People around me should know CPR and the Heimlich maneuver. I blogged about this topic how I started to choke on my own saliva one day, it’s really no joke.

    Multiple sclerosis serious symptoms-respitory issues

    Yesterday a nurse told the story of a similar event but with a piece of meat. She didn’t have the respitory strength to cough it back out and actually choaked. Someone luckily knew the Hemlich and cleared her airway but not before she was unconscious. It’s a scary thought but it’s a real issue.

  3. Diet was a discussed topic. Neither doctor nor nurse practitioner stated that a specific diet was linked to MS but all of them said this; low fat, less processed foods, low sugar, high fiber, complex carbs, vegetables, fruits, fresh foods as much as possible. To me, it just said being Vegan was the right way to be, what I personally am now going to add is no sugar unless I’m the one baking with it to control the intake. No more vegan bought cookies or goodies. If I want them, I can bake them.
  4. High dose Biotin , Alpha Lipoic Acid, CQ10, and Low-dose Naltrexone. The study on biotin in the high dosage is in the 3rd phrase of clinical trials but has shown promise. You can wait the 3 years more for the actual dose drug to come out or you can order it now from Ace pharmacy whose link is directly to the right of this blog ?  .

    High dose biotin going on 5 months patient thoughts

    Alpha Lipoic Acid has also shown some promise and is making news in the MS world. Both doctors agreed that taking these drugs had no downside and would recommend them to their own patients. Cq10 wasn’t touched on but glossed over as another vitamin that doesn’t hurt. Low dose Naltrexone however did have a small trial that actually failed and because of that it wasn’t recommended. The doctors felt it might work for certain patient or it might have been the placebo effect but this isn’t something they recommend.

    Alpha Lipoic Acid and MS a patient’s view


I didn’t learn anything new but I did learn new perspectives. I was happy for the opportunity to participate in the event.


2 thoughts on “MS views and news discussion notes

  1. Thank you so much for the feedback! I have my first Ocrevus infusion on Tuesday. I’m pretty excited to see how I react to it and how it works in my body. I’ll be letting everybody know on Wednesday!

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