neurologist

5 Comments Posted on medical awareness, Multiple Sclerosis, Patient Talk

Multiple Sclerosis! What are the life lessons have you learnt from being diagnosed with MS. A new Vox Pop.

Multiple sclerosis awareness

Multiple sclerosis awareness

As I’ve mentioned before one of the main purposes of this blog is to allow people with multiple sclerosis to share their experiences of living with the condition.

We hope that PatientTalk.Org will give an opportunity for people in the MS community to learn from their peers and gain support in the battle with multiple sclerosis. As well we hope to help introduce the challenges of life with multiple sclerosis to people who are unaware of its effects on life and health.

This blog seeks to do both. It is part of our Vox Pop series where we provide a voice to people with MS and give a podium for multiple sclerosis awareness.

In this case we use one of our Facebook Pages MultipleSclerosisTalk to ask our readers and contributors a very simple but very important question:

“What have you learnt since being being diagnosed with multiple sclerosis?”

A very open yet key question for PwMS.

I have to say we were overwhelmed by the responses to the question for which I am very grateful. We thought it would be of great value to the Multiple Sclerosis community to share just a few of the comments made!

“I’ve learnt to appreciate really simple things in life”

“Everybody’s ms is different. Thankful for what you’ve got there people worse off than yourself x”

“That people don’t give a Crap because most of us don’t look sick. Nobody says oh, do you need anything, can I come and help. On the good side, if there is one, how to fight and claw your way through life, not to be a quitter. You can only depend on yourself”

“That people don’t give a Crap because most of us don’t look sick. Nobody says oh, do you need anything, can I come and help. On the good side, if there is one, how to fight and claw your way through life, not to be a quitter. You can only depend on yourself”

“That im stronger then i thought”

“Everyone’s MS is different, you find out who your real friends are ,do what you can do when you can do it and don’t over do it.”

“How much it can take from you and destroy, your marriage of 34yrs, job, family and friends. That everyday you need to get up and fight for what you want.”

“Don’t plan your life out! Just enjoy each day as it comes. If its bad, then tomorrow is another day. Always listen to what your body is saying xxx”

” If you need help – ASK! From someone who used to do it all I have become humble and asked for help when I need it!”

“To have more patience, nobody gets MS, but an MSer!”

“That I had been misdiagnosed for over 30 years. Seems I had symptoms as young as 16. When I would be on my feet and legs for extended lengths of time. I would get horrible muscle spasms and even lose use of my legs for periods of time. When I had my first child, my legs went into spasms and pulled to my sides as soon as the Dr put me to sleep after 22 hrs of horrific labor. He came in several times afterwards and checked my legs and walking ability. He told my husband that he’d never had that happen before. If I had anymore trouble see a neurologist. That was 33 years ago. I experienced relapses from time to time. But, was told I have Fybromalgia, osteoarthritis and degenerative joint disease. Which.and all of those I do have. But, the MS was overlooked by these other complications. My MRI showed multiple lesions my new Neurologist said. How long have you had these symptoms. I replied since I was 16 and worked a 16 hour double shift as a nurse’s aid. When I finally sat down. My legs went into spasms and I could walk for days! My Dr back then said it was sciatica nerve pressure from being on m feet so long. I suffered all these years thinking it was something else. Only to find out last July I have Ms and the others as well as Chari Malformations. Uh! Life isn’t always fair.”

“That non MSers haven’t the first idea & that being strong & having a positive attitude are the only options available. I’ve learned to appreciate the little things in life, things which pass you by when you’re healthy …. Oh & to be more patient “

“Be thankful for every day that you feel good…… live life to the fullest, and never give up or give in to the demon of MS!!! Most important. …I’m not alone on this journey. .so many are just like me.”

“Who my real friends are! And get a second opinion if the first doc you see doesn’t believe your symptoms. I actually had a doc tell me last relapse if I cant walk talk or see I dont need treatment what the?”

“That neurologists are nefarious creatures.”

So as you see it varies from the very positive to people who are in the “slough of despond”.

What now interests me is what readers of this blog think is the main lesson they are learnt from multiple sclerosis? Also which of the above comments do you find yourself in agreement.

It would be great if you could share more in the comments box below.

many thanks in advance!

Leave a comment Posted on Autism, Research

What causes autism? What this amazing film, called Unlocking Autism, about new research into the causes of autism and ASD!



Unlocking Autism

Unlocking Autism

Claude is profoundly autistic. His mother Dr Rosamund Hill is a neurologist working on a new research project to uncover the genetic causes of autism. This fascinating documentary follows their story.

You can watch this fascinating video from AttitudeLive of New Zealand here


1 Comment Posted on Multiple Sclerosis, Patient Talk

You’ve Got This – How a new social media web site called Healthline help a person with multiple sclerosis. A guest post from Jeri Burtchell


Healthline

Healthline

It was March 4, 1999 and I was driving through the countryside on my way home from the University of Florida in Gainesville. I had left my infant son in my mother’s care while I’d gone there for a second opinion, referred by my neurologist. He had been treating me for what he said was “possible MS.”

I clung tightly to that word “possible,” knowing it meant there could be another explanation. Some other reason my legs had betrayed me, leaving me nearly unable to walk. “It’s got to be a pinched nerve,” I kept telling myself, even though an MRI had revealed a lesion on my cervical spine.

“If you’re here to verify what your doctor thinks,” said the head neurologist at Shands Teaching Hospital, “then I completely agree with him. I’ve looked over your records, the films, etc. and he was spot on,” he said, almost as if we were talking about a ref’s call on an NFL game and not about my life. “You’ve definitely got multiple sclerosis.”

Then he grabbed the lapels of his white lab coat and gave a little shrug as if to say, “What are ya gonna do?” I think he meant it sympathetically, but it struck me as odd. He opened the door to leave and, glancing back, he smiled.  “Good luck with that,” he said.

I had come there by myself, sure the expert would think my doctor was a quack. In hindsight I wish I’d have taken a friend. As I drove home, fear and worry began poking at the numbness of my denial until they finally broke through. I could no longer hold back the flood of emotions.

I pulled over on a lonely stretch of two lane highway and shut off the engine. No other cars around, all I heard was chirping birds in the nearby woods. I got out of the car and sat on the hood. And I cried. Sobbing and full of mourning for a life that had just ceased to exist. I had never felt such loneliness and fear. Everything in my life had changed. Everything.

Was I going to die from it? Worse yet, was there going to be endless suffering? I had a baby who was never going to know a healthy mother. What was I going to do?

I didn’t have a computer and Google had only been around for six months. We didn’t have a support group in our rural community. I didn’t know anyone I could reach out to. There was nobody who said “You’ve Got This.”

Flash forward. Now it’s been almost 15 years to the day since I cried all alone in the woods. So much has changed. If I had the chance to go back and tell my newly diagnosed self what things would be like 15 years later, I’d have told myself to get on with the business of living. I’d be strong enough to deal with this disease no matter what it threw at me.

When Healthline asked me to participate in a video campaign to share my message of hope with others who are just facing their MS diagnoses, I jumped at the chance. What I wouldn’t have given for this kind of resource back in 1999.

So I made my video and tried to say all the things I wished someone would have told me. I emphasized that you need to take control of this disease. Don’t let anyone make your decisions for you, and learn everything you can.


It is now part of a collection of inspirational YouTube vignettes that Healthline is sharing in their You’ve Got This campaign. If you’ve been living with MS, you can share your message of hope, too. Just make a short video about what motivates you to stay positive with MS. Imagine you’re talking to a friend who just got diagnosed. What would you say? Then upload it to YouTube.com and submit the link to Healthline by clicking the big blue “Add Your Video” button. Your message will join a host of others in an ever growing collection of inspiration.

But it’s more than that. Healthline has partnered with the National MS Society and MSWorld to raise money and awareness. For every video that’s submitted, Healthline will donate $10 to the NMSS. So do something special, and empowering–and help raise money at the same time.

So much has happened since that dark day, 15 years ago. I found a therapy that works for me and I’m taking care of myself. My son is a sophomore in high school now, and the most compassionate person I know. I’ve been speaking as a patient advocate at events around the country and I’ve started a new career as a freelance writer, covering the MS News for Healthline. So many things I never could have imagined — all positive — that have come after my diagnosis.

So if you are one of the 200 people in the US this week who just heard the words, “You’ve got MS,” don’t let it be your darkest day. Just remember, you’ve got this!