Discover and read the best of Twitter Threads about #MultipleSclerosis

Most recents (10)

@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?
Read 6 tweets
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.… I started DMT’s. 3 exacerbations in 12 years. It took Gad to convince Doc to diagnose me.
Read 12 tweets
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)...
Read 14 tweets
My journey👉🏼of FDA interfering w/ my treatment 4 #MultipleSclerosis "WHEN NO OPTION IS NOT AN ACCEPTABLE OPTION!" #Ortho #cardiac #COPD #Autism #Parkinsons #Cancer
Bloomberg @business interviews Celltex patients about experience w/ FDA shutting down adult #stemcell study we in. #MS #Arthritisw #Parkinsons #COPD #Ortho…
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
Read 13 tweets
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.
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
I said that
Pain has Color
Mine is Red.
Read 4 tweets
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?
Read 4 tweets
@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.…
How & Why I Adhere 🤔
Read 3 tweets
'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...

Read 47 tweets
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.
Read 25 tweets

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