Discover and read the best of Twitter Threads about #multiplesclerosis

Most recents (24)

Thought of You Yesterday at my MS Neurologist yearly appt. I wrote my self assessment down so I would make sure to cover my bases, not waste Her time or irritate Her. I am very experienced w/Neuro Docs. #Gadolinium came up. I asked Her to read my blog…
She’s a major Doubter. It’s Not Her Fault, hooked on Gad, Routinely used, yearly with #MultipleSclerosis Everybody does it!
Easy, Check the Box ☑️ No consent, No information to Patients. @US_FDA won’t look into their own approval of a microlyzed toxic nonbiological heavy metal 🤦‍♀️
@Wagner_Nephro Hope Your study can be broadened and get attention of MS Centers Doctors. Expand it. What if those yearly Gadolinium injections do more Harm to already damaged nerves? I want to be in your study and need @UVA Medical Center to join🙏🏼 How did Tweedle prove safety?
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Just finished my morning repair cycle. Thanks to @Apollo_Neuro therapy & @ouraring to monitor & coach Me 🙏🏼😎 You can get your own ⌚️ and feel the Healing vibrations 😎 My Oura ring readout was encouraging. Sometimes tells me to rest. #MultipleSclerosis
My blog posts on @Apollo_Neuro…
Check their website and order yours! 😎
Pair with @ouraring and monitor your health 😎
Read 3 tweets
@GlennYoungkin Dear Gov. Youngkin, I heard You want more restrictions on Cannabis. Also Hemp based Products… I am 64, have extraordinary pain & misery from #MultipleSclerosis Arthritis. Have a Medical Cannabis Card and Zero access now. Rethink please 🙏🏼
I had a Medical Cannabis Card in Vermont, where I lived for 40 years. I had a convenient Cannabis Products store. Before we moved, I checked out Virginia. Was relieved I could get a card. Disappointed at lack of access for a Responsible Adult Retired Disabled Nurse. It hurts.
I turned to I tried a few different products and found one that is particularly helpful in softening my pain and other symptoms of MS. I was relieved they were covered under Farm Bill because THC less than 0.3%. Works better for my symptoms than Cannabis.
Read 10 tweets
@AaronBosterMD I understand your problem. I’m a totally adherent super responder to Copaxone-now generic daily Glatopa. I even had Young Whippersnapper Docs insult Dr. Hillel Panitch, my beloved First MS Doc who did CombiRx trial.…
While we’re talking about progression-inevitable and we want to delay as long and as much as possible… how about taking #Gadolinium off the formulary?…+
About your passionate video. I would start wi/your ending-admit some people prefer shots. It’s ok, one choice we can still make. Copaxone/Glatopa-my religious daily shot. Amino acids feed my mitochondria. They sting a little-leave skin divets, bee stings-I figure meds are fresh.
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Sometimes Positive. Feeling Unique:Disabled Nurse with 35 years in all areas of Healthcare. Neuro my favorite way before diagnosis. My Doctor a respected coworker. I endeavored to make life better for #pwMS, Care Team, Researchers, Loved ones, started blog
Sometimes Bad, er, “negative”. Yin & Yang. Can’t have one w/o the other. The World goes around. Friends & Family die of diseases I hope I don’t get. #MultipleSclerosis is a “dreaded” diagnosis. Revealing responses vary from Speechless German is better: Sprachlos-Absence of Speech
Bad: no cure, too many treatments to choose from. What were You offered today?
Did You see that commercial for the once a day pill 💊 that has You going to a picnic after the 10k 🏃‍♀️?
No, Mom 🤦‍♀️
Good: In early 1980’s I worked Neuro and all we had was High Dose steroids x5 days
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I hear You, Martin. When I worked ICU, I was most nervous for Carotid procedure patients. You only have 2 and boy, they are Essential! My heart dropped if they came back with a bleed or embolic stroke. Often permanent. Doctor having a bad day. Life ruined. It’s Seriously 😦 Scary
@GavinGiovannoni @Brandon_Beaber @Wagner_Nephro can We start a Body Drive? After our bodies die, can we donate them for #MultipleSclerosis research? Martin-You want #CCSVI Noticed, @sennasthunder @lambertdebb & Gad Warriors want our day in court. #Gadolinium may complicate ccsvi?
Like this study: I wonder if they looked for Gadolinium at autopsy. Trying to hack our immune system has been effective to some extent. Some people progress quickly to total dependency. I believe it’s a Constellation of events. Each individual has a story.
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I’m always listening
As long as my Google search of #MultipleSclerosisCauses yields “Possible” Causes, question every word, every Doctor.
Next tweet is more thoughts about your ideas Martin 😎🖖🏼
Of course if You Follow Me, You know I am fighting #MultipleSclerosis
War in #Ukraine
Partisan Hate Speech/Censorship allowed by @paraga @Twitter with #Section230 Protection Racket by Lawmakers 🇺🇸
Pondering 🤔 our complex vascular system.
#pharma is a drug
Martin, started using @Apollo_Neuro and @ouraring September 2020.
My HRV never as low as Pre-Apollo. Gets me thinking about my years as an ICU Nurse. Blood Flow, Perfusion, that Pause during heartbeats that sends blood to the heart, takes toxins away.
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🛣️ Ventura Highway 🛣️

"The spike protein is a PRION-LIKE PROTEIN...
The immune cells carry that prion-like protein into the SPLEEN...then in the spleen, the prion-like protein, which again, you can say is spike protein, causes the immune cells to start producing alpha-synuclein>
which is a prion-like protein linked to Parkinson's Disease. The immune cells in the spleen are making lots and lots of spike protein, it’s really toxic. They need to get rid of it. They stuff it into these exosomes...
These little nanoparticles…human manufactured nanoparticles>
What the ones will contain with the vaxxine is spike protein…. along with some miRNAs that are regulatory molecules, along with alpha synuclein...all of that’s packaged up in those exosomes and shipped out of those immune cells in the spleen.
Where it goes is, it travels along>
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Unfortunately for some reason, Our Worldwide group of suffering people is not having any influence on Doctors who Develop, Sell, Prescribe & Love those Images all glowing like my first. I saw Christmas trees lights all over my Brain. I almost passed out seeing #MultipleSclerosis
I’m not sure when it was I started suspecting I Might have Gadolinium Retention. I still have no diagnosis, my medical Doctors Skeptical, labeled “Skin Picker”. My kidneys work so “Nephrogenic” Gad retention isn’t it. Realized with Me, it should be coded Iatrogenic Gad Retention.
Once I suspected #Gadolinium Retention I met other like minded people here on Twitter like @Wagner_Nephro @sennasthunder @lambertdebb @Gadolinium_MRI @SandiTitus1 @planetd1 and more. I looked at FDA warning ⚠️ in Disbelief. They Know we Retain in Brain, Bone, & other Vital Organs
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Daily Bookmarks to GAVNet 02/01/2022…
Omicron's wave is at least 386% taller than delta's—and it's crushing hospitals | Ars Technica…
#OmicronVariant, #transmissibility, #HealthCareSystemCapacity
How can battery-powered aircraft get off the ground?…
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Daily Bookmarks to GAVNet 01/18/2022…
Euler’s 243-Year-Old ‘Impossible’ Puzzle Gets a Quantum Solution | Quanta Magazine…

#EncodedInformation, #QuantumMechanics, #EulerPuzzleSolution, #Mathematics
Transmission T-026: Eric Maskin on mechanism design for the market | Santa Fe Institute…

#MechanismDesign, #ExtraordinaryCircumstances, #ComplexityScience
Read 20 tweets
Second Edit.
1. The Proper Order is @GlennYoungkin @WinsomeSears @JasonMiyaresVA
2. Shocking Democrats line out. You lost. Wait, is @PBS Partisan? Virginia Voted For the 3 Winners.
3. “Seeking control” You Mind Readers?
Compromise ✅ Cajole 🚫
Power in Committees? Threat?
Looks good 👍🏽
1. I moved from Vermont to Virginia in 2019. I have terrible pain from #MultipleSclerosis. I got a Medical Cannabis card thinking I could buy from a dispensary. No Cannabis available. Now legalized with lots of Rules, no access ⛔️ to Any for Patients like Me. It Hurts. Dems??
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Education is a big part. Empathy doesn’t hurt. I think #pwMS are wise to share among themselves: symptoms, pitfalls, what helps/harms, treatment, diagnosis, assessment. Non #MultipleSclerosis People who Love You cannot understand what You go Through. Try to give them good info 💚
I would point them to website/twitter for @shiftms @mssociety @GavinGiovannoni @Brandon_Beaber @AaronBosterMD @drbarrysinger No reason to reinvent the wheel, so much information here. Fear is based partly in Not knowing What to Expect. Lay out a solid plan with detours possible.
Bumps in the Road shouldn’t be a sign of Failure, but a Detour. Don’t ever beat Yourself up. Don’t waste breath on loved one who can’t hear you. They can go into denial/depression too. It’s important for them to Know-it’s Normal. Sucks but that’s the MonSter I’m referring to 🐉
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There’s way too much silence about the extreme negligence of sending patients infected with untreatable high lethality newly emerged respiratory virus to Nursing Homes. @JaniceDean spoke for many victims unable to speak out. I remember You two never backed down to Imus 😎
I knew at the beginning, watching it all from my recliner chair, wishing I could be in the middle of this. Wish I had been a nurse in a hospital dumping patients out (GOMER=Get out of my Emergency Room). I would have refused. I would have sent to Mercy Ship or Javits Center.
If I was Director of Nursing at a Nursing Home where Hospitals were going to dump infected or suspected #covid patients . I would have Closed the Door to New Admissions. I would have allowed limited, controlled,patient visits. Staff came and went. It was cruel.
Read 6 tweets
Some thoughts about living with invisible illness and academia... 🧵

#AcademicTwitter @AcademicChatter #AcademicChatter #phdchat #phdlife #MultipleSclerosis
I've lived with autoimmune disease for two decades. I have always felt it was something I needed to hide in my career - a sign of weakness, something that might make people not want to work with me or give me opportunities. (I blame The West Wing, but that is another story). 2/🧵
This year I started my #AcademiaMadeEasier newsletter, with ideas to make academic work a bit easier with small steps to promote productivity & protect work-life balance. From the start, I was very open about the fact that I live with chronic disease. 3/🧵…
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Excellent article #SmolderingMS
I Accept it as a Diagnosis #MultipleSclerosis
Also Dr. G wants to redefine MS as a Biologic Disease,
Currently a Radiologic Disease-MRI changes guide treatment/verifying relapse. I favor Biologic. Emphasis on Total Body Health.
@GavinGiovannoni For Me, the Patient, Monitoring my Day to Day Function, Symptoms, Impairments, Cognition, Sleep, Mental State, Activity, Trends, Social. If something out of whack, MS Team could be notified. Maybe a phone call, medication tweak, come in for eval, real time.
@GavinGiovannoni in my quest to eliminate #Gadolinium from @US_FDA approved drugs, I have done reading about MRI. I never realized active MS lesions only show up relatively briefly. Yearly MRI’s are a crap shoot. Oh look, there must be a new one…
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@washingtonpost only got part of this right.
Healthcare has become Much more complicated. More moving parts. More obscure diseases, meds, treatments, individual preferences of Treatment Choices.
Patients move around a lot & Change Primary Care Docs a lot.
Lack of continuity.
Patients Don’t Tell Everything & Often Lie, Minimize or Maximize Symptoms, Often don’t know the right words, express pain as anger. Read something on the Internet or the neighbor said, try this.
They don’t hear everything.
Doc: You have Cancer
Patient hears Blah, Blah, Blah 😑
Personally on a Journey being Retired Disabled Nurse of 35 years with #MultipleSclerosis I feel I have #Gadolinium Deposits in my body, left behind after 11 MRI’s in 9 years. @Wagner_Nephro listens and believes it is Possible. Listening is Highly underrated as a Physician Skill.
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You know it’s hard enough growing up in the USA 🇺🇸.
I know, I know, We Have a Lot of Resources.
Sorely lacking when it comes to Self Esteem.
@Facebook banned the 45th POTUS, #realDonaldTrump.
Anybody can be Banned, Banished, Extinctified, Cancelled.
Afraid of Freely Speaking. 1️⃣
2️⃣ Meanwhile, #realDonaldTrump ‘s Wife, Former #FLOTUS is on Social Sadistic Media like @Twitter sees the Runaway Insults, Sensitive photos of Her, Rude, Obnoxious,
BULLYING is the word. Teenagers learn what they see. “Let’s gang up on Susie or Kyle or Donnie “ Get ‘em cancelled.
3️⃣ @Facebook and @Twitter have become the Moral Standard for their Participants. I started using as an adult in my 50’s when this Era of “Social Media” started. I liked that I could “talk” to People around the world 🌎, indeed Off the Planet, too @Space_Station ❤️🚀🛰
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1/9 משתף מחקר נוסף שלנו: MRI מח לפני הריון יכול לנבא התקפים קליניים של טרשת נפוצה לאחר לידה.
2/9 טרשת נפוצה היא המחלה הדה-מיאלינטיבית הדלקתית הנפוצה ביותר במערכת העצבים המרכזית. למעשה זו המחלה הנוירולוגית המגבילה הנפוצה ביותר שפוגעת בצעירים, ובעיקר בצעירות (גיל20-40).
3/9 חולות בטרשת נפוצה חוות פחות התקפים במהלך הריון, וידוע שהסיכון להתקף (relapse risk) עולה בתקופה המוקדמת שלאחר הלידה, וניתן לחיזוי על פי פעילות המחלה בזמן שלפני ההריון או במהלכו.
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I am so perplexed @US_FDA
I’ve had 11 MRI’s with #Gadolinium in 9 Years for #MultipleSclerosis monitoring & CombiRx study.
I feel I have Systemic Fibrosis related to Gad accumulation.
@Wagner_Nephro is trying to raise awareness of Iatrogenic Induced Gad Illnesses.
The Warning on the Label I only recently found, says #Gadolinium IS Retained. Not Maybe, might be, could be.
What Is the Maximum Dose? Frequency? Why did the MRI tech tell me it all comes out in my Urine and Hydration doesn’t help??
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1️⃣Thinking 🤔 since I saw @AaronBosterMD ‘s Excellent video on reading MRI’s done to monitor #MultipleSclerosis activity. Flashback, Saw my 5th Cervical Spinal Cord Lesion light up like a Xmas Tree 🌲 bulb. 💡
I almost passed out. At 49, Would I become quadriplegic? #MSLesion
2️⃣ Dr. Boster said active lesions glow for brief time, 4-6 weeks.Glow because there’s Leak of contrast, You know, MRI Contrast is a microlyzed form of #Gadolinium. From the article in 1️⃣ 🔽🔽🔽🔽
#Neurotoxicity #RepeatedMRI @GavinGiovannoni ? @Brandon_Beaber ? @drbarrysinger ?
3️⃣ From the Article, #Gadolinium referred to as a “Chemical “. I feel a more accurate label is “Microlyzed Toxic Heavy Metal for Intravenous Use.” Oh, Mined by slaves in China and New Market opening up in #Afghanishtan #RareEarthMetals What will they do with Gad if Obsolete? 🤔
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@kevincinar @Wagner_Nephro Dotarem is #Gadolinium tricked up to make Gad slide on out through your renal tubules… wait, afterthought in the @US_FDA site… it doesn’t all come out…Brain, bone, “Other Organs” gee, seems like a lot?? Heavy Toxic Metals?
@kevincinar @Wagner_Nephro @US_FDA My dipping into the not so mysterious business of MRI Contrast.…+ Wonder what I got 11 times in 2007-2016? Never Warned it might be retained in my brain, bones and “other organs” (skin, kidneys, no doubt liver, spinal cord, fibrosis skin. Scarred places.
@kevincinar @Wagner_Nephro @US_FDA Beware if the Word “Appears” Appears in So Called #Science Papers.
It means what comes after “Appears” is completely meaningless. Let me explain like my monkey 🐒#MultipleSclerosis is said to “Appear” to come from EBV infection 🦠,Genetics 🧬 . DMT’s “Appear” to act to help you.
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The @US_FDA says you might retain a little, maybe forever.
They never get to the part that says #Gadolinium goes into veins of MRI patients without informed consent& Administering Tech & Ordering Doctor & Hospital Formulary don’t know why you’d need consent, it all comes out, No?
The #eecummings poem in my Head
#AlButNotQuiteMost Gad comes out in urine of MRI patients into the wastewater treatment plant and it flows unharmed into our waterways. Mined in China 🇨🇳 Using Slaves to mine Rare Earth Metals. Can I get Any of my Doctors Curious 🤨??
They don’t know,They don’t know.
They don’t think I could be accurately reporting my Symptoms which, conveniently for @Bayer overlap nicely with #MultipleSclerosis ,Obesity, HTN, DM, Seizures, Pain of an otherworldly nature. Nails grew straight through digit tips. Neurotic?
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