My battle with an Invisible Disease – Los Angeles Sentinel

My story begins February 2008, I was 23, I was a recent college graduate. I was working a highly sought-after public accounting job. I had moved to a city where I worked long hours in a quest to climb the corporate ladder. In early 2008 I had started experiencing random numbness, it went from being one foot to one leg, from one leg to both legs. It felt like my limbs had fallen asleep, but I couldn’t shake the feeling.

One day about a month after first experiencing the numbness, I woke up numb from the neck down. I didn’t trust myself driving, the walk up and down the three flights of stairs to my apartment was daunting and the simple task of getting out of bed became a chore. I went to doctors, but all the doctors saw was someone who looked normal. How could someone who claimed to be numb, walk and talk. Over and over again I was turned away as they said nothing was wrong. In a last-ditch effort for answers I started going to the ER almost every day for a month.

Eventually I met a neurologist who believed something was wrong, she just didn’t know what. Thankfully towards the end, her husband walked in, and he was a specialist neurologist, and he could tell something was wrong. He took a look at me, carried out visual tests and he said, you have to go straight to the hospital. Then after a week in the hospital and many MRIs scans later I left with the diagnosis of multiple sclerosis (MS).

https://lasentinel.net/my-battle-with-an-invisible-disease.html

This is a well-written article; it gives a pretty good idea about how quickly MS can strike without warning.  I will say it’s a must-read article that anybody who doesn’t have MS so they can understand what the person is going through.

Multiple sclerosis is clearly an invisible disease for some which makes it hard for people to understand. Before I started showing signs, the tingling and burning in my feet could not be seen by anybody. I was told it must be a mistake because I couldn’t have a disease.

The article also indicates how difficult it can be to diagnose multiple sclerosis. I went over 5 years with various diagnosis of what was wrong such as a collapsed disc. a pinched nerve, and fibromyalgia, before I was finally diagnosed with MS.

Israeli researchers discover MS drug could help epilepsy patients

Tel Aviv University researchers have discovered that a drug used in the treatment of multiple sclerosis may be adapted to help epilepsy patients.

The development is significant because 30-40 percent of epilepsy patients do not respond to the pharmaceutical treatments available today, particularly children with a rare and severe form of the disorder called Dravet Syndrome, a university statement said on Monday.

https://www.timesofisrael.com/israeli-researchers-discover-ms-drug-could-help-epilepsy-patients/

I’ve said for some time that if we can cure multiple sclerosis we will learn enough to be able to cure other diseases such as epilepsy, Parkinson’s, etc.

In this case it appears a step forward was made with epilepsy by using an MS medication called Aubagio approved by the FDA on September 2012.

Man with MS running the London Marathon hails benefits of exercise while living with incurable condition

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Tom Cutts, 27, will run his first marathon on Sunday to raise funds for Colchester charity MS-UK after being diagnosed with relapsing remitting MS, which affects the nerves in the brain and spinal cord.

Since his diagnosis in October 2017, Mr Cutts has faced symptoms including chronic pain in his face, bowel issues, balance problems, and bouts of depression.

But the former semi-professional footballer, who vowed to run the marathon on the day of his diagnosis, told the Standard running has helped “take his mind off things” over the last two years.

https://www.standard.co.uk/news/london/man-with-ms-running-the-london-marathon-hails-benefits-of-exercise-while-living-with-incurable-a4127601.html

This is an inspiring story of grit and determination to accomplish something with MS. Congratulations Tom, on reaching 162% of your goal.

Local electrician in the race to help fight MS at cycling event

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For his sixth consecutive year, Mr Manix, who is living with MS, aims to raise more than $20,000 with his team called “Manlec” by cycling in the 100km ride.

Describing the ride as “a short struggle for a potential long-term solution,” Mr Manix said he participated each year so that there could be funds raised and put towards supporting Queenslanders like him, who are living with MS.

“As a community, we don’t want people living with MS to feel like they have no support or options due to lack of funds, and therefore I want to support MS Queensland to ensure they have enough funding to do so,” Mr Manix said.

“Even though I’m not an ardent cyclist, I know that the Brissie to the Bay Ride is such a great cause and I love the concept of friends and family coming together as a community.”

Marking its 29th year in 2019, MS Queensland Executive General Manager Fundraiser Daniel Lalor said the event was one of the organisation’s largest and most important fundraisers of the year.

 

https://www.couriermail.com.au/questnews/southeast/local-electrician-in-the-race-to-help-fight-ms-at-cycling-event/news-story/c1a19ade847606f3d6cbb8b8c11af4bb?nk=c75f5f194ed7d9992bcdc20711cc0083-1556402752

Great job Scott good luck with your ride.

Longhaulpaul raises $18,500 for MS Charity on Yamaha Star Venture

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Yamaha Motor Corp. USA, which has a corporate office in Marietta, congratulated Paul Pelland, also known as Longhaulpaul, for setting his third world record by riding a 2018 Yamaha Star Venture for 24 straight hours on a dynamometer, while raising $18,500 for Multiple Sclerosis charity, MS Views and News Inc.

The Longhaulpaul “Nonstop to Nowhere” event was broadcast live on Facebook in a telethon-style fundraiser as Pelland rode his 2018 Yamaha Star Venture motorcycle at freeway speeds on a dynamometer for 24 straight hours with no rest breaks or stops. Pelland traveled an estimated 1,674 miles.

The event featured Pelland playing guitar, eating bugs and raffling $3,600 worth of prizes, all while seated on the motorcycle.

Thousands of viewers from around the world tuned in throughout the broadcast, with hundreds of donors contributing $18,500 to MS Views and News. The donations will fund educational programs for people living with Multiple Sclerosis.

After being diagnosed with MS himself, Pelland began a million-mile journey raising awareness and funds as he toured the country on his motorcycle. After six years, he has ridden 350,000 miles, raised $150,000 for charity and has shared his story with over 250 audiences across the country.

https://www.mdjonline.com/news/lifestyle/longhaulpaul-raises-for-ms-charity-on-yamaha-star-venture/article_62ddaad4-679d-11e9-bf91-3b2506f0f551.html

I’ve been seeing for several years now what Long Hall Paul has been doing to raise money for the MS community.

Once again I would like to say thank you both Yamaha supporting Long Haul Paul and Long Haul Paul please keep up the great work.

Classic tractors hit north-east roads for charity


The Buchan Vintage Tractor Run has raised more than £100,000 for good causes since it launched in 2000.

The colourful convoy of 75 classics, some dating from the 1940s, set out from Fetterangus at 10am on Sunday for a trip around the north-east.

The group visited Old Deer, Stuartfield, Maud, New Pitsligo and/ Strichen.

This year’s event was in aid of the Multiple Sclerosis Society and Alzheimer’s Research UK.

https://www.pressandjournal.co.uk/fp/news/north-east/1735933/classic-tractors-hit-north-east-roads-for-charity/

This is an awesome unique way to fund raise. I wish some American farmers would do this here. The 100,000 Euros equals over $111,000 American dollars.

I believe that if we can cure Multiple Sclerosis, it will help cure other diseases like Alzheimer’s.

West Bloomfield resident with MS takes to the streets

WEST BLOOMFIELD — A West Bloomfield man with multiple sclerosis and his team of four families affected by the disease raised $70,000 for the Walk MS event at Comerica Park in Detroit April 13, making them the top fundraising team.

“There are breakthroughs being made every day due to the ongoing research funded by charities like the National MS Society, which is why fundraising is so important,” said Matt Caplan, 49, a family law attorney who was diagnosed with MS in 2009.

“When I was diagnosed, there were approximately six medications available, and now there are 13. I believe a cure is not only attainable, but that it will happen in my lifetime.

https://www.candgnews.com/news/west-bloomfield-resident-with-ms-takes-to-the-streets-113068

Wow! Super effort team FAMS, on fundraising $70,000.

You are right more research means more medications & a possible cure for multiple sclerosis. We’ve already had 2 drugs approved by the FDA this year so far.