@Andy I just watched this video which was PHENOMENAL and thank you for posting it. I took notes and am posting a summary of the video (combined with my own commentary
) in the hope that it will be helpful for others. I plan to watch the two videos on PR (not sure if one of them is this one yet?) and will post something over there, too. I am always amazed at the quality of videos from "Dysautonomia International" and this speaker, Dr. Brent Goodman, from Mayo Clinic, was so impressive and on target, that it is baffling to me why Mayo in general is so sucky and does not take any of these conditions seriously? There is such a dichotomy between the medical knowledge, testing, and treatment of this doctor vs. Mayo which throws everyone under the "Central Sensitization/Psychiatric" bus.
In summary, he spoke about the connections between Autoimmune POTS, Dysautonomia, and Mast Cell Activation Syndrome (MCAS) and he could have been describing my life history over the last 4+ years. He said that 73% of cases of POTS started out with a virus or pathogen (and in his example it was a stomach bug but in my case it was mono and then a second respiratory infection). He said the first cases of known POTS were with soldiers in 1871 but the actual term & diagnosis was not developed until 1993! WTF took them so long? And even since 1993, most doctors still do not know about POTS from my experience.
He talked about "Acute Autoimmune Autonomic Neuropathy" and how with this autoimmune pathogenesis the treatment is IVIG. No wonder why IVIG has been so incredibly helpful for me. He said that POTS often causes "autonomic system remodeling" which can become chronic, persistent and refractory (which was my case prior to IVIG & Rituximab) and he described the shortness of breath that I experienced when walking without wheelchair (for 3+ years prior to my treatment). Today it is 5:00 pm and I have not yet needed to use the wheelchair inside of my apt. Today I had a woman come to my apt to cut & color my hair (which I've been doing since 2015) and she had never seen me walk without the wheelchair, and like everyone else, she was in awe. I was walking at a fast pace from room to room while carrying things, and was not short of breath, and she was amazed. I am also no longer allergic to any products or smells (from the MCAS piece of my illness).
The video said how some people can heal from POTS with just life-style changes and meds like Midodrine but this was not the case for me. I continue to use all kinds of life style changes, and still take Midodrine, but prior to IVIG and Ritux, they were not enough to walk without wheelchair, or to stand for more than 30-60 seconds without gasping for air. And now I can do four loads of laundry, stand and wash dishes for 30 min, etc. I am wondering how far I can really walk now, and if I can climb stairs or drive now, but have not had the opportunity to try yet and am still trying to be careful and not push too far, even though it is incredibly tempting.
In the video, the doctor said how Neuros do
not understand these conditions and said that the Neuros need to "Put on their big boy and big girl pants" which made me laugh b/c if I was still waiting for one of the three Neuros that I saw to help me, I think I would probably be dead vs. posting here today. He talked about how the anti-muscarinic auto-antibodies are high in a percentage of POTS patients (I did not catch the number) and they are high for me, along with the beta-adrenergic auto-antibodies, which I don't think he mentioned unless I missed it. These auto-antibodies (along with others) are what led my main doctor to diagnose me with "Autoimmune POTS" (vs. a different sub-type of POTS) and this video completely concurs with this.
Lastly, he spoke about Mast Cell Activation Syndrome (MCAS) and how mast cells are everywhere, yet they can also be "regional" to a specific system in the body. So one person with MCAS could have predominantly GI issues, but another could have skin issues, or breathing issues, etc. I already knew this from my MCAS specialist but am not sure how common this info is (and many doctors have never heard of MCAS or do not believe it is real). He said that 1/3 of POTS patients will develop MCAS and this is exactly what happened to me. I developed POTS in Jan 2013 and I developed MCAS in March 2015.
He said that MCAS has important implications for the immune system because mast cell degranulation can trigger autonomic dysfunction/instability AND the converse, that autonomic dysfunction can trigger MCAS is also true. He said he starts his MCAS patients on: Cromolyn, Allegra & Zantac and I was started on these meds in 2015 but they did absolutely zero to stop the progression of my anaphylaxis & allergic reactions. The winning combo for me was Ketotefin, Zyrtec, Pepcid, some supplements like Quercetin, and Atarax (vs. Benadryl) as my rescue med. But even with that combo, and being able to tolerate many normal foods again, the reactions continued and did not go into remission until I began IVIG. I thought it was a fluke but the MCAS remission has continued for 16 months. Now what happens when I eventually stop IVIG, I do not know? The IVIG alone put my MCAS into remission, a full year before I did Rituximab, so Ritux played no role in that process. But it was not until after Ritux that I regained normal muscle strength and the ability to stand for as long as I want (longest is now two hours) and the ability to walk short distances without wheelchair.
In the video, he said that "aggressive pharmacotherapy" is necessary for MCAS, which I one million percent agree with, and saved my life. He also said that MCAS (unless it is Mastocytosis which is a primary disease) is secondary and is not the primary cause vs. an end-product. My MCAS specialist said exactly the same thing and this reinforced what I had been told which was cool.
This video made me think that there is a viral/pathogen triggered illness, that truly looks like ME/CFS in the early stages, but then shifts into auto-immunity, POTS, and MCAS. He described my illness but did not give it a name. I was explaining to the woman who cut my hair today (b/c she was asking questions re: my recovery and I did not mind) that I do not feel fatigue or lack of energy vs. that my muscles had been extremely weak and I literally could not control my HR, BP, or ability to breathe when I stood up without wheelchair and now I can! And in addition, the allergic reactions are gone.
The POTS is not actually gone, and I do not want to misrepresent this. The POTS related symptoms have been the most intractable but they are vastly better and the only explanation is that the POTS was Autoimmune and now with less auto-antibodies from IVIG and Ritux, my overall dysautonomia is better. I have additional auto-antibodies not mentioned in the video that we believe contributed to my muscle/breathing weakness but in the video, he described the overall auto-immune profile which I completely fit. Except I have autoantibodies attacking my thyroid, calcium channels, GAD65, etc, vs. he was talking about Celiac, Sjogrens, Lupus, RA, and auto-antibodies that I do not have.
Lastly, in the video, the doctor mentioned IVIG and Plasmapheresis (PP) as the main treatments but in my experience, no doctor in the US was willing to prescribe PP for me so I never had the opportunity to try it. If it worked, it would have given quick relief which would have been diagnostic, but the results are also very fleeting. Versus Rituximab (for someone in my case) is much longer lasting and if you are a responder, in the absolute ideal dream scenario, the new B-cells can grow back healthy, and auto-antibody free, and lead to a lasting remission (but Rituximab was not mentioned in this video and I am adding that as a side note). I am going to Google this doctor and am really looking forward to watching the other videos on PR. Thank you so much
@Andy for posting this, it was so cool to watch!
