Discover and read the best of Twitter Threads about #MultipleSclerosis

Most recents (21)

Body Storm Gadolinium,Code Black Pyramid(CBP) Tanja Hustedt-Zempel via @YouTube thank you @sennasthunder and my fellow #gadolinium warriors. Gadolinium is an incidental cast off in mining the stuff creating computer chips, electronics. Doctors prescribe it
Patients get it. Routinely
Too Routinely
So Routinely that it’s downstream from hospital restrooms 🤯
So Routinely that I had to speak to 7 different levels of personnel in radiology to Refuse it. I’ve had 9 doses in 7 years as part of #CombiRx study.Easy,Just check off the box.
Thought I’d squeeze this crisis into your oh so busy day @realDonaldTrump I promise that China didn’t just send a virus and lie about it spreading and WHO lied to tank the economy and make Orange Man gone. Now Can We Stop calling “It” a #DOSSIER ? 🤦‍♀️
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A #practical topic for today. #Pregnancy changes things - but more so for our #neurology patients - or not? #pearls from the #EAN2020 #MedEd #MedTwitter #MedStudentTwitter #neurologyresident @EANeurology @WNGtweets
Let’s first address #multiplesclerosis. Patients get better in third trimester and 30% relapse #postpartum. Immune responses shifts to anti-inflammatory in 3rd trimester to accommodate fetus - #etcomehome - but rebounds after birth. #MedEd #doubledoc #AcademicTwitter
Continue #firstlineinjectables #glatiramer and #interferon - these don’t cause #teratogenicity. In flares, consider IVIG and PLEX. How about #steroids? Usually fine except in 1st trimester when they can cause birth defects #MedEd #MedStudentTwitter #MedTwitter
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Now eye enjoyed an important question addressed at #EAN2020. Good to think about when you are called to ED for #opticneuritis. Let’s think about it together. Let’s focus on #clinicaldiagnosismaking #meded #medstudenttwitter #medtwitter #neurologyresident @WNGtweets @EANeurology
How do you tell if it’s optic neuritis or not? #painless #unilateral #altitudinal -means top half or bottom half of the field - vision loss more likely to be non-arteritic AION. Any other red flags less likely to be optic neuritis?
Now if it’s #painful it’s more likely #opticneuritis - but what sort? Bilateral vision loss and painful, think #MOG. Unilateral severe vision loss more than pain, think #Aquaporin4. MRI orbits show longitudinal extensive optic nerve enhancement in both. So MRI orbits for clues.
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#Lyme and #MultipleSclerosis can be clinically indistinguishable, with some docs differentiating them based on 40 year-old, inaccurate Lyme antibody tests. See thread. @danaparish @BayAreaLyme @Lymenews @lymehopecanada @ProjectLyme @LymeChallenge pubmed.ncbi.nlm.nih.gov/28480854/
Spirochetes had been found in human MS autopsy tissue since the early days of medicine. They called it Spirochaeta Myelophthora. Many researchers have published the same findings. pubmed.ncbi.nlm.nih.gov/13118387/
Lyme bacteria (back then called cystic forms, now called round bodies or persisters) was isolated from spinal fluid of MS patients but not from healthy controls apart from one who had a history of Lyme. pubmed.ncbi.nlm.nih.gov/11787831/
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Abschnitt 3
Bin gerade bei meinen Eltern, steht da doch nicht mein EX da, hallo, mein Eeexxxxx 🤮, der hat mir gerade noch gefehlt
jetzt hat der Typ mich auch noch voll gelabert, von wegen ich würde mit ihm "durch einen Filter sprechen"...wir leben doch im 21.Jahrhundert!!!! Soll ich ihm ne Brieftaube schicken 😂😂😂
#allesfürdencircle
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@UWMedicine we have delivered cognitive-behavioral, psychoeducational, & mindfulness-based interventions for pain, fatigue, and depression via #Telehealth. Sharing tips we have learned along the way...
1/n
Over the past 10 yrs, we have conducted multiple RCTs, using telephone & videoconference (groups and 1:1) to deliver our study interventions because of our geography.

2/n
Due to #COVID19, we are now moving most of our clinic patients to #Telehealth visits to protect the health of patients, staff, & providers. Many of you are likely doing the same. Here are a few more pointers. @APA @APADiv22 @APADivision38
3/n
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Been quite the week here with #CoronaVirusSeattle #COVID19. As Psychology Director in the @UWMedicine #MultipleSclerosis Center, my colleagues have reached out with questions like, “Our patients are really concerned and I just don’t know what to tell them.” Long thread to follow:
I don’t have the magic answer, but I do have some thoughts that can hopefully be helpful for everyone. We have been doing work over the past 5 years on how people cope w/uncertainty and how to help people cope better w/uncertainty. Here are related recommendations:
1. Understand that (a) ⬆️ uncertainty causes ⬆️ distress & (b) uncertainty w/ a threat to one’s wellbeing causes ⬆️⬆️ distress. Therefore, we should anticipate that most everybody is experiencing ⬆️ distress. This is unpleasant, but also expected & normal.
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What's in a name?
Why @WHO's formal name for the new #coronavirus #disease matters:

time.com/5782284/who-na…

#COVID19 #Covid_19
1. Wash your hands often and/or use hand sanitizer more frequently.

2. Try not to touch your face... 🙈

3. Cough into your shirt or arm.

4. Stay home when you are sick.

5. WASH. YOUR. HANDS!

#COVIDー19
#COVID19
#coronavirus

toronto.citynews.ca/video/2020/02/…
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Sorry to crash your party 🎈
Gad ain’t that great 😢
Why did you think you needed it for MRA/MRI anyway? 🤔
So a neurologist could get a clearer picture of what? 📸
Something so big you can see it on the outside? (Like stroke)?
Does that poor dialysis patient know effects?
I’m a retired disabled RN, worked Acute,Critical Care, Government, Homecare. I received 9 doses unknown #gadolinium from 2007-2014.I was in CombiRx study for #MultipleSclerosis treatment. I have had several years of patches of thicker skin,extreme pain,and more.Similar to others.
We formed several groups of worldwide patients who communicate via social media. We are comparing notes and symptoms. We arrived at similar conclusions. Gad is Bad. It needs to be Stopped. Seriously, I am Not an Alarmist nor Kook. I am an insomniac in pain.
Read 12 tweets
The name Marijuana has a “reefer madness “ association.
I’ll use the name Cannabis.
Cannabis has THC and CBD along with other therapeutic properties I find very effective for relief of Pain and Misery of #MultipleSclerosis Unfortunately Federal government says it’s like heroin 🤨
In Vermont, it was initially legal to buy #MedicalCannabis with a $50 card and note from my Doctor, a Board Certified Neurologist who said she’d rather I use Cannabis than use #opioids for my extraordinary pain and suffering. Every year $50 and a note saying I have MS.
Meanwhile, down at the Dispensary, the nice bud tenders laid out the 3.5 gram packages. $50 each. I was stunned. “A nickel sack?” The kid didn’t even know what I meant. I relented, bringing cash because the bank wasn’t allowed to be used due to Federal regulations.
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It was seven years yesterday since I first started feeling symptoms of #MultipleSclerosis. After finding out I have MS, I promised myself I would push my body to help battle disease.

Countless hospital visits, seizures, and scary moments later — thankful and still pushing.
For those who don’t know much about Multiple Sclerosis, I suggest following @mssociety. They do amazing work, and their efforts have deeply helped me and my family.
I also urge everyone to consider donating to them or @MS_Focus, which @jk_rowling recently made a generous contribution to.
Read 3 tweets
@ReidunKerner @RadiologyBiz in case you were looking for validation of patients’ complaints suspecting #Gadolinium causing debilitating pain and other side effects, try asking us & listening. Many of us found each other.I showed my neurologist a diagram of Scars which accumulated white chunks.
@ReidunKerner @RadiologyBiz We all have indescribable pain.
Many of us have Normal kidney function. My excellent Doctors are very skeptical. Told me GDD only observed in Renal Failure Patients. I told them, if they see someone like me to keep their mind open. Manufacturers say “it’s safe “.
@ReidunKerner @RadiologyBiz Did anyone ever look at quality, purity standards?
Did anyone follow up on patients with frequent MRI with Gad contrast like myself, on the CombiRx Study?
My pain symptoms and Temporal Lobe Seizures conveniently blamed on #MultipleSclerosis
Even a questionnaire screening?
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What @Twitter is 2 me
Lifeline,Conversation,Worship Of Life as a Mortal
No Time constraints,on and off switch at my control
Block nasty people
Report nasty tweets until my fingers hurt
Give up sometimes
Always @DisabilityJ my Virtual Church is there with a kind word
Golden Rule
Twitter started, for me, as a way to share my Daily blog entries,
Connect with others with #MultipleSclerosis when I was on a drug study and working full time as a nurse. A support group. As the recent polarized political climate has heated up, so has the conversation on Twitter
I have to concentrate some days on my own reactions to negativity and hateful, sometimes abusive tweets. I lost money trying to get pain relief from a Twit who blocked me after taking my bitcoins. It can be a dangerous place.
Read 7 tweets
I have thought long and hard about #Gadolinium which I have suspected as the source of my pain, joint creaks,skin issues and bewilderment.Powerless Old Disabled Nurse with #MultipleSclerosis And about 9 MRI w Gad.
1st one saw my 5th Cervical Spine lesion. Lit up like an Xmas bulb
After 12 years of workups for #MultipleSclerosis
3 neurologists, numbness, optic neuritis, spasms, pain, fatigue, I finally had my answer. I could finally start treatment to prevent fading away like I saw so many patients do when I was a Neuro nurse at the Medical Center.
I had many lesions never explained, for many years. This is the first active one they found. traveloguefortheuniverse.blogspot.com/2009/11/ms-and… I started DMT’s. 3 exacerbations in 12 years. It took Gad to convince Doc to diagnose me.
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It's #MSAwarenessWeek , so I thought I'd do a mega thread on my invisible MS symptoms, from head to toe. Everyone with with #MultipleSclerosis is different; what goes on in my body is unique to me. So let's take a journey through my day to day world, because "I look SO well!"
We'll start with the head. SO much going on here. First off, brain fog and cognitive issues...feeling like you have a brain constantly trying to grasp for information but the cotton wool inside it won't let it. And words...losing words, forgetting words, replacing words...
NERVES! Particularly the trigeminal and occipital nerves...trigeminal neuralgia feels like a frazzled neuron party on your face, sending electric shocks hither and thither, like toothache in your whole head (tbh, I am able to control this well with medication)...
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My journey👉🏼of FDA interfering w/ my treatment 4 #MultipleSclerosis "WHEN NO OPTION IS NOT AN ACCEPTABLE OPTION!" #Ortho #cardiac #COPD #Autism #Parkinsons #Cancer

cellr4.org/article/390
Bloomberg @business interviews Celltex patients about experience w/ FDA shutting down adult #stemcell study we in. #MS #Arthritisw #Parkinsons #COPD #Ortho
bloomberg.com/news/articles/…
When left with no viable medical options, what do you do?👉🏼We reached out to other "No Option Patients" and formed PATIENTS FOR STEM STEMCELLS
#MS #PARKINSONS #Autism #COPD #arthritis #ortho #cancer #cardiac patientsforstemcells.org/home/
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Pain
Pain lies
Pain lies under my skin
A strand of fingernail
Dead tissue
Pierced my sleep.
Better than Yesterday’s Pain.
As bad as Today’s.
Dear Doc,
If you ask me
How bad it is now
And my eyes roll around
Inside such a sound
Hell raining on a firestorm
Devil’s Cauldron burning
A Dragon biting my ankles,
Pain is my Shackles
“Not bad”
I will say.
#ChronicPain
#MultipleSklerose
#MultipleSclerosis
#micropoetry
Dear Doctor, Nurse and @MediaTJC
Forget the Number
My pain has None
My pain Not None
More than 10
Off your Scale
Manufactured by Morons
There
I said that
Pain has Color
Mine is Red.
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1️⃣ Glossary: Bring your own cannabis #BYOC
Or Cloud ⛅️😎
#patient experience is not scientific by itself
I agree retrospective studies will not be easy
Especially with so many patients buying Street #cannabis
Now #medicalCannabis legalized in some states
Can studies ask?
2️⃣ Are you Using?
Does it Help?
Are you giving blood for research anyway?
Why not screen for levels?
Correlate with Symptom relief?
I have recently had 12/10 to 15/10 pain.
That does quite a number on my well being, mood, sleep, function, relationships. A Silent Scream 😱
3️⃣ Is my brain MRI the only way to monitor my
#MultipleSclerosis ?
Or is a more Comprehensive approach needed?
My Cervical spinal cord was sliced as if by a knife.
Spasms continue, haze in my Optic Nerve persists.
If I Slept better, would that lead to better disease management?
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@OhioHealthMS the MS society refused to print my article about #Adherence
I wrote it when,as a Nurse Case Manager,newly diagnosed officially after my 3rd “episode “ when my C 5 lesion lit up.
I Dreaded Taking Shots, Giving Myself Shots.I also worked as a Neuro nurse early 1980’s
I also wanted to Visualize #MultipleSclerosis
As an ankle biting dragon 🐉 chewing my nerves
#DMT ‘s would be my Sword ⚔️
Every day I take my #glatopa I think of how it used to be.
The Dwindles chased by steroids
Chasing your tail.
traveloguefortheuniverse.blogspot.com/2011/09/wheelc…
How & Why I Adhere 🤔
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'Bad Bot' (part II) by @DrMurphy11

The story of a dangerously flawed #eHealth AI Chatbot.

A THREAD about #HealthTech #Hype, #AI #Governance & #MedicalDevice #PatientSafety.

Read on, or see the single tweet summary👇0/45
This thread follows on from a prior thread ('Bad Bot' - part I) & picks up the Babylon story from the #BabylonAITest event which was held on the 27th June 2018.

'Bad Bot' (part I) - 👇 1/45
The #BabylonAITest event was held at @RCPLondon & promised to reveal to the world, Babylon's latest "ground breaking research" & "the most exciting advances in Artificial Intelligence".

Dr Murphy was expecting Big Things from @babylonhealth...

2/45
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Thread: Six years ago today, I found out that I have #MultipleSclerosis. A battle I wasn’t prepared for, but with the help of my family and friends, I continue to fight.

I hope my story will help someone else with #MS or a loved one of someone with MS.
I’ve always been in love with athletics and exercise, I played EVERYTHING growing up and that didn’t change as I entered adulthood.

I remained a very active person, so when my body began to feel “off”, I knew something was wrong.
One morning I woke up and my legs didn’t really have sensation, sort of like “pins and needles” when you’ve been sitting too long.

I didn’t think much of it, and I decided to go play football that day anyway. Most of the game I felt fine, but then my legs felt sensation-less.
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