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…
@GavinGiovannoni Don’t hate me because I’m beautiful. I believe #Gadolinium for injection is partly toxic Free Gad. I believe it is spun up when the big magnet 🧲 hits it. I believe a small amount lodges in twisted, Gnarly places in vasculature: scars in skin, muscle, bone, brain
I think a better way to Monitor #MultipleSclerosis patients is for Doctors & MS Teams-Clinicians, Nurses, Social Workers, PT, OT to have access to my body diary 📔 My list of troublesome symptoms, stresses, good days, bad days. I monitor my heart rate, and So much more @ouraring
I’m pairing with Neurologist designed @Apollo_Neuro
I’m using Apollo 7-8 times spread out day and Night. Have had noticeable improvements gradually. Also saw HRV ⬇️ with spell of illness. I had a big seizure, UTI and EMS to ER. Don’t remember 12
Using @Luminosity to exercise and assess various aspects of cognitive function. I can tell when I am tired. Trends tell me am I doing better? Worse? Somehow fusing technologies together could give you a daily snapshot. I might be slipping and not report. May think it’s minor. Fin
@Luminosity correction: I use Lumosity 🤦‍♀️ Brain games, not Luminosity 😎
@UnrollHelper #unroll please 🙏🏼😎🎁

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More from @marygerdt

1 Dec
I believe it’s time for #RoeVWade to be revisited.
It was always a shaky ruling,
One case,
Unlimited power to abort until baby crowning.
Boon 4 Planned Parenthood
No guidelines. Lawmakers got off easily
They should have made law based on Multiple Views & considered human rights.
2️⃣ I don’t mean take away a Woman’s right to choose to have an abortion. I mean consider the age of viability when the Fetus becomes an infant, viable separate from its Mother. Planned Parenthood is unnecessary. Hospitals can designate a clinic where the pregnant woman can go.
3️⃣ Oh yes, a Social Worker and Nurse Clinician might assess the Woman and interview Her. Possibly, with the Father. Options can be discussed. Supports, counseling, other family planning. Yes, She might change her mind.
Read 4 tweets
18 Nov
@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.
Read 7 tweets
1 Nov
Need tip line. There’s a Nurse 👩‍⚕️ 👨🏽‍⚕️ 🧑‍⚕️ out there, who knows the exact scenario. Forced 2 break Usual Influenza Virus Protocols-isolation, STOP 🛑 Admissions from Hospital!
Mercy Ship & Javits Center Open
2 sites, if used, would have saved Thousands of Vulnerable Elders.
I would focus on Charge Nurses, Directors of Nursing with Families, who need jobs and would consent to such violations of containment of infection. Dedicated Staff. No mixing of air, meals or walkways. Giving Tip caller immunity would level the playing field. To AC, it’s a ⚽️
I would write a letter to The Licensing Entity and copy each owner of facilities agreeing to engage in unsafe transfers and cohorting infected patients with vulnerable elders in Facilities. The Highest Protected Class.
CC: Legal Aid (at least half NY Medicaid funded).
Read 6 tweets
30 Oct
Peer-2-peer healthcare: are we ready for a revolution?, by @GavinGiovannoni gavingiovannoni.substack.com/p/peer-2-peer-… Excellent Dr. G @GavinGiovannoni 👍🏼
Lately has been hard to get basic medical questions answered, “Press 1 to speak with Phonemail “. My Friends online are here all the time.
@GavinGiovannoni When first diagnosed, I was a long time Nurse. Support group offered but I didn’t want to see people or travel more. I worked on the road. National MS Society too upbeat, too basic. Discovered @shiftms and a Match is made. We’re all different. I need discussion.
Maybe it’s good to expand on your work of pros and cons of various platforms, apps. Maybe assign your Students to follow groups or even lead a group. Hard to ask Doctors. #Gadolinium toxicity my latest crusade. My latest tools: @Apollo_Neuro and @ouraring traveloguefortheuniverse.blogspot.com/search?q=Apollo+
Read 6 tweets
29 Oct
Gadavist (gadobutrol) injection | Radiology US Always On (in) My Mind.
Next tweet will share Highlights of our Battle against #Gadolinium. Meanwhile, take a gander at what the @FDA Accepts as safe. Have You ever been asked How many MRI’S W/Gad you’ve had?
radiologysolutions.bayer.com/products/contr…
⬆️⬆️⬆️ From @Bayer website.
@Wagner_Nephro @sennasthunder @lambertdebb @Gadolinium_MRI @planetd1 et al 🙏🏼👩‍💻
Bayer should Correct “Nephrogenic Systemic Fibrosis”.
It is Systemic Fibrosis.
It is Caused by the Drug Gadolinium.
It is Iatrogenic Systemic Fibrosis.
Not just renal pts.
@US_FDA
1️⃣ I am seriously puzzled by Iatrogenic Systemic Fibrosis isn’t Listed under Adverse Reactions.
2️⃣ What happens to People who’ve had multiple lifetime doses, pregnant, pediatric patients and people with Inflammatory Conditions? I’ve never been asked these questions.
Read 5 tweets
13 Oct
@Voices4Seniors @GovKathyHochul @rontkim and Families, Friends, Advocates,
This is the essential, very sad task of analyzing what went wrong. No denying, it was catastrophic. Next step is Reform and Defining the Chain of Command for decisions, pitfalls. Mistakes were made.
It will be helpful to hear from the People in the Chain of Command. Owners of Facilities involved, Administration, Directors of Nursing, Infection Control Nurse, Attending Physicians along with Families & Representatives. Don’t forget Emergency personnel, Ambulance company reps,
Local Agency on Aging, Health Department at the Local State and Federal Level, Ombudsmen, Legal Aid, CMS. Guardian advocates. Last but Certainly the Most Telling are Stories of Elders themselves. Once Vibrant Aging turns South, the Loss comes just as Your ability is diminished.
Read 6 tweets

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