Offering Information without Endorsing is ok. Anecdotal Affirmation from other patients, support group is not Your responsibility but could help your patients live with the MonSter more peacefully.I’m smoldering away on daily Glatopa since 2007. No relapses since.
Physical-Cognitive Ever so gradual decline. On disability from 35 year nursing career.I started by keeping journals. My daily observations, appointments,summaries, status.Writing things down helps incorporate them into your reality. Nobody Wants to be disabled. Denial comes easy.
People/Things that Help:
Significant other, Fred ❤️ in my case.
Neuro Team I can easily communicate with, an MS Center.
Having a home, disability income, insurance, medications, pill organizer, Routine,mail order,Rest when I need to because no point in fighting Self.#autoimmune
#MedicalCannabis products when available have been very beneficial to me. Prohibition in one state 🇺🇸 and leniency in another leads to paranoia and confusion. No matter how You feel about Cannabis, I’m telling you pain, spasms, depression are helped. Strains are all different.
Technology: Started using @Apollo_Neuro device to balance my nervous systems. Paired with @ouraring to monitor my progress.
I have seen my HRV go up since starting to use @Apollo_Neuro and @ouraring Together I can see the effects interventions have had on my status. I also did PT, learned Myofascial Release taping and doing Epsom salt w charcoal soaks.HRV⬆️Resiliency ⬆️.
Also using @Lumosity brain training. Interesting, fun, not too hard to do. Informative. See trends.
Don’t moan, I believe I have #Gadolinium deposits, they have been coming out of my fingernails & toenails.This, I believe is contributing to an upswing in my health. I’ll say again #Gadolinium is toxic and causing more smouldering @Wagner_Nephro @threadreaderapp#unroll please.
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Love the Brain 🧠 Health goals.
I really think there’s an overemphasis on diet- one size fits all. No, I will never fast. My PCP put me on Ozempic for Type 2 diabetes,have lost almost 40 pounds. It led to My Portion size being reduced.I’m in for Goals and Education w negotiation.
My friend,coworker on Neuro unit in ‘80’s.Noticed how with all this electronic communication, we’re not very good at it. We had 100 years to master the Telephone 📞 . No wonder it took me 10 phone calls to get more lamictal so I won’t have a seizure again.What if I couldn’t call?
Just got the ER bill. Thankful 🙏🏼I have insurance. 12 hours $10,000.
I paid $75. We each are our own case managers,trying to stay on top of things in this fast paced world. My PCP leaving so I have to get a new one. Hard to manage all these ch ch ch changes. Love my Twitter pals.
I think the only real answer is to
1️⃣ stop using #Gadolinium
2️⃣ actually Quantify for Each Patient who has received #Gad
And Record this in their Medical Record.
3️⃣ Document any and all fibrosis, skin deposits, signs of Gad deposits
4️⃣ Did I already say STOP USING GADOLINIUM.?
@Wagner_Nephro@sennasthunder For deposits which have only migrated into less vascular areas or constricted (like scars, fascia) , chelation is not possible. Skin deep deposits helped by Epsom salt/activated charcoal soak,sunlight, lots of time. Eventually they’re working out.
@sennasthunder@Wagner_Nephro@GavinGiovannoni Am grappling with the fact I have had a few episodes of Absence.Husband saw. Seizures no doubt. I have Temporal Lobe epilepsy,had big One 2 weeks ago. Lamictal level low. Increase to therapeutic.Feel much more with it,active.
@Wagner_Nephro@sennasthunder@lambertdebb My observation: Hard strings extruded through scars to create long Strands like Hairs, some like ceramic knives. If I pluck a shard from left thumb tip, I feel a tug in my neck, shoulder. Once the hard pieces come out, completely healed.
I thought with all my tugging and unconscious biting of my fingers and several old scars that they would be Red, Inflamed, Bleeding, Infected. They are not.I thought if I had OCD that my fingers would never heal.They are healing once the chunks are out. Sunlight, salt, charcoal.
Just realized I stop telling my Doctors.
They just give me a roll of the eyes 👀 and maybe a little internal chuckle 🤭 as they Observe Old Nurse Mary looking fine as ever. Never showing pain so bad it causes nausea. Yup, that’s part of our problem, pwMS 🤦♀️ @GavinGiovannoni
Great article. From UK.
Why wait?
My comments below. @EMDSerono helps people in USA afford Clabridine but can someone with #CIS Clinically Isolated Syndrome #MultipleSclerosis get the drug ordered?
Medicaid would not cover and probably Medicare too. Mg
@GavinGiovannoni So Twitter came through with Clabridine ad and safety profile. Even the drug company warns. Back to hit or miss opportunity? Lost days of opportunity to prevent or halt nerve destruction. Keep trying. And please think Gadolinium and retention. You’ve had some.
I Love Your Blog and Never miss an Episode of Real World Reporting on all things #MultipleSclerosis !
I had one issue with one post which was tainted with political bias. Your writing also carries an undertone. The President of the United States Twit account BLOCKED by @jack
You use the liberal code words:
Trump Supporters (75 million strong)
Conservatives (And.?)
Conspiracy Theorists (Define!)
Far Right Extremists (Who?)
I’m a #realDonaldTrump supporter, @DonaldJTrumpJr ‘s Dad
Conservative believes in individual Liberty @threadreaderapp#unroll
I’m a Conspiracy Analyst. When the Progressive Liberals in my old home state Vermont tried to sell my farm for paying taxes 9 months late, nobody cared about this old disabled woman. traveloguefortheuniverse.blogspot.com/search?q=Tax+s…
Far Right Extremists are non existent in my friends circle.
@107Wchv#RobertELee Surrendering saved Thousands of Tired Union And Confederate Troops. He was a Soldier, Military Leader, and He Ended the War between the States. It wasn’t just about slavery. About the “public parks”: Without statues, ownership should revert to McIntire Heirs.
My thoughts over the years, trying to understand why my Bohemia born Great Great Grandfather died at Shiloh as a Union Soldier for the Illinois Regiment. His widow and 4 children had to Prove relationship to get $5 a month widow’s pension. #Reparations ?