Neuromyelitis Optica/Devic's disease & Transverse Myelitis support in India

26/06/2023

Good Morning everyone! Hope you all are doing well! Sending you best wishes and healing energies🙏

14/06/2023

Was an honor to have met Ji and I treasure this moment! He has always been an inspiration to me🙏🙏

07/04/2023

Register now for a FREE 2 hr Mind Power and Positivity session on 11th April from 3-5 pm IST.

30/06/2020

Here is an infusion guide for NMO and NMOSD!

http://infusioncenter.org/wp-content/uploads/2020/06/Infusion-Guide-for-NMO-and-NMOSD.pdf

19/06/2020

Please watch it!

13/06/2020

FDA approved Uplinza for treatment of neuromyelitis optica spectrum disorder in AQP4 antibody positive adults. Uplizna is the second treatment for NMOSD.

13/06/2020

A new Therapy is approved by FDA

12/06/2020

Hello friends! Hope all are well and doing good.
It’s been three years since I had my TM attack and I was diagnosed with NMO.
I am well and doing good and had my retuximab infusions in May after they were overdue by two months. I couldn’t get them sooner because of the Covid situation and the risk involved with patients with low immunity going to hospitals. Luckily there was no relapse as my blood count was being monitored and we could get the infusion as soon as we came to know that the CD19/20 count had gone up. God is kind!!
I have for you a Great Podcast series to listen to! Very informative. Happy listening.

The ABCs of NMOSD is a 10-part education podcast series to share knowledge about Neuromyelitis Optica Spectrum Disorder – NMOSD, a rare relapsing autoimmune disorder that preferentially causes inflammation in the optic nerves and spinal cord.

26/01/2020

https://advancingthescience.mayo.edu/2020/01/23/mayo-clinic-research-discovers-a-molecular-switch-for-repairing-central-nervous-system-disorders/

A molecular switch has the ability to turn on a substance in animals that repairs neurological damage in disorders such [...]

23/07/2018

Researchers have discovered that a gene may be linked to neuromyelitis optica, a highly rare disease known to lead to blindness and paralysis.

10/06/2018

HEAT INTOLERANCE IN NMO

Did you know that for years, the “hot bath” test was used to diagnose multiple sclerosis? And while NMO is NOT MS, we share similar issues when it comes to heat intolerance. So, when I talk about the “hot bath test”, what happened is that doctors would immerse patients that they thought had MS in a tub of hot water and if their symptoms worsened the doctors would take that as a diagnosis of MS. So, it stands to reason that the same could be said of NMO, right?

Many NMO patients experience a temporary worsening of symptoms when the weather is hot or humid, even when they run a fever. It comes from an elevation in our bodies core temperature, which impairs the ability of demyelinated nerves to conduct electrical impulses.

What this means for NMO patients is that if you’ve had Optic Neuritis in the past, and have demyelination on the optic nerve, your vision may become blurry. It may even become painful. If you have had Transverse Myelitis in the past, and have demyelination in those areas, you may find yourself getting wobbly on your feet, tingly, or even loose sensation to areas you have been affected in the past.

What you need to know is that these heat-related symptoms are TEMPORARY! The heat generally only produces temporary worsening of symptoms. It does NOT mean that you are having more disease activity. These symptoms will generally reverse themselves quickly when the source of increased temperature is removed.

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What are some strategies you can use to ease the effects of heat intolerance?

• Stay in air-conditioned environments during periods of extreme heat and humidity.
• Use cooling products such as vests, neck wraps, and bandana during exercise or outdoor activity.
• Wear lightweight, loose, breathable clothing.
• Drink cold drinks, chew on ice, or eat popsicles.
• Use an oscillating fan or air conditioning during indoor exercise.
• Exercise in a cool pool (

30/05/2018

Interesting read

When the updated NMO diagnostic criteria were published, the number of NMO cases increased all over the world.

14/02/2018

Lab Tests Show Treatment Might Help People with Autoimmune Diseases.

13/02/2018

Learn more about NMO and NMOSD, including history, current research, FAQs, diagnostic criteria, informative videos and comparisons to MS.

05/01/2018

I have been diagnosed with NMO in June of 2017. If I can be of any help to anyone who is diagnosed OR is a caregiver of anyone with NMO or TRANSVERSE MYELITIS, please do contact me.