Meet The Community Welcome Team

Chemar · 09-24-2007, 09:39 AM

A very big thank you to the NeuroTalk Community Welcome Team for all they do to greet new members and help them find their way around the forums.

Alffe · 09-24-2007, 06:23 PM

Hi...I'm Alffe and it's one of my pleasures to be a part of the welcoming team. I've found great support from NeuroTalk members. I've made new friends here and am constantly learning from them....sometimes I have to kick and scream but in the end I often "get it". Old friends know me well enough to say "she's harmless...usually." Pull up a chair and let's talk about anything that's bothering you. I'm glad you're here!
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Darlene · 10-13-2007, 01:45 PM

Hello to all. My name is Darlene and I am happy to be among such a good group of caring people. I am happy to of found this web sight.

When I was ten I discover that I had epilepsy. So I have lived with it a alllllllllllllllllllllllllllllllll time. I feel getting it young it has help me be strong with living with it. To me on this earth something will occur with everyone, and being so young (in my opinion) a person becomes strong with the pubic.

I am happy to be married to a wonderful man (34 years). We met at college and it was love at first sight.

We have to kids, one daughter and one son. Luckily we got five grandkids from them and their spouses. My favorite comment is "grandkids are the reward for not killing you kids." They are Briana(13), Dwayne(10), Sabryna(6), Belle(4) and Robert(2). We did have a 6th one, Jewelie who we lost to SIDs, she would be nine.

One last thing is recently I have developed Sleep Apnea and have found some answer here as well.

Looking forward to meeting more members coming in and love the many ones all ready here.

Darlene

Shelley · 11-28-2007, 11:23 PM

Hi All,

Welcome to NT

I'm Shelley

Close to a year ago now, 12/06, I stumbled upon this great place as I was doing some research for my TOS (thoracic outlet syndrome).

At that point in my life while I was not alone, I sure felt alone and scared beyond belief. It felt like no one could understand the physical pain I felt or the mental agony about what was happening to my life. My world was changing rapidly because of illness. I never thought anything like this would happen to me.

How small my world was back then.

The welcome I received here was so amazing and warm and beyond caring. Immediately people comforted me, understood me, and helped me.

I found a place where I could be the person I now was, struggling for my health. And the people here understood and gave me the tools and love to help me adjust to this new world of mine.

It took such pressure off me because I had a safe haven where I could come and cry, or talk, or lurk, ask questions, explore information and even laugh.

NT became a home away from home and the release allowed me to better cope with the life I was now in.

It certainly has not been a great year for me health wise. Actually the last two years. My world came crashing down healthwise in October 2005. And not one doctor could pinpoint what was wrong. And up until that point I thought I was invincible. I was not a sick person. I look back now and see how I took my health for granted and abused it.

I am still today exploring and pinpointing what went wrong with my health and how to get closer to healthy. At this point I have TOS and neck/spine issues. I discovered a long standing autoimmune thyroid problems and some other recent problems I am still exploring. I have learned how to better navigate the health system and get doctors to work for me.

Notice I did not say to try to get my life back the way it was. Because if I did that I would not have NT. And as determined as I am to get better, I am beyond grateful for how this site and the people here have made me a better human being. I would not change that for anything in the world.

At first when arrived at NT I explored and devoured any information I could. I'm the kid who has to know how things work, its just how I am built.

But after awhile I started going outside the world of my problems and poked around the other corners of NT.

I lurked in the vitamin forum and learned so much from so many members there and I played in social chat and became a night owl...hoot hoot!

. I met a monkey that gives out choccy and the great mods here.

And I made friends, that are among my dearest now. Friends I talked to in chat online at NT, met for coffee and physical therapy and friends clear across the country that I chat on the phone with. I am no longer alone and not as scared.

I also started just saying hi to others and welcoming people to our wonderfully safe place. It gave me joy to be able to extend a cyber hug hello and a listening ear to others. To give back to a place that has given me so much.

So what else can I tell you?

I live in sunny So California with my wonderful hubby Dean, an angel who has traveled this road with me and loves me in sickeness and in health, truly. I have also lived in the great cities of Chicago and NY.

I work in the advertising industry, marketing movies. So the next time you see a commercial for a film, its likely that my team placed it. I think I do it because I like movie theater popcorn with butter, lots of butter which does not help that cholesterol problem but who cares that is the least of my health issues.

I love cupcakes as you can tell by my avatar, also not helping the cholesterol. I am a connossieur.

I love to shop (too much hubby would say), clothes, shoes and handbags are my downfall.

. Especially handbags which I have given up because of my TOS.

I am a sports fan and fan of Michigan football where my hubby grew up. Go Blue!

So

home to NT. I look forward to meeting you around the boards and hope you find the same warmth and peace I do when I am here.

and God Bless!

glenntaj · 01-05-2008, 07:05 PM

Like many people, I latched on to Neurotalk during the rather extended hiatus of Braintalk. I'd been a very active member there, and at other boards, for quite some time and welcomed the chance to continue relationships with many that I had met there and to make new ones.

My own particular neurological problems are fairly well known--I'm a relatively famous case study in neuropathy circles, and get interviewed on the subject fairly often (I'm a good quote), but the quick summary is that on April 12, 2003, without any warning, I felt a small tingling on the bottom of my right foot that progressed to searing, burning nerve pain over the whole foot in the course of four hours. In three days it was suddenly in my hands; by day ten, when I finally got in to see a neurologist, it was all over my body. I had never felt pain of this kinds EVER before--a searing, burning, tingling nerve pain that kept me from sleeping, eating, walking my dog, wearing clothes, touching bedsheets . . .While the initial neuro testing revealed nothing amiss, I was given Neurontin, which thankfully started to knock the symptoms down somewhat--it would be weeks before I could titrate the dosage upward enough to function somewhat haltingly, but at least I could start to sleep and eat again. A six-day stint in hospital for an enormous round of testing--when a 43-year-old guy has a sudden onset of body-wide neural pain and no obvious toxic exposure, multiple sclerosis is generally the first diagnosis suspected--revealed nothing; x-rays, spinal tap, MRI's of brain and spine, innumerable blood and urine tests, were all just FINE. I was discharged with no diagnosis and no suggestions for how to get any; the medical staff was baffled, inasmuch as nerve conduction studies were among the normal tests.

Fortunately, my symptoms were reduced enough that I could now sit at the computer at least some time and I started to research what this whole thing could possibly be. Though none of the local neuors were familiar with the idea, I decided that I must have some form of small-fiber syndrome (the small, unmyelinated fibers subsume the sensatioons of pain and temperature, and their function is not accesible through standard nerve conduction study) and I sought out those centers which could continue a far more extensive and focused protocol. Though it took me two months, I finally got an appointment at the Cornell-Weill Center for Peripheral Neuropathy in Manhattan, a leading research center and clinical practice, which had the capability of doing specialty lab work and a skin biopsy, the gold standard for determining small-fiber damage. I was fortunate there to meet Drs. Latov and Chin; the latter did the skin biopsy on the spot after taking my history and seeing my previous test results. It turned out to be the only test that showed anything--my intrapidermal nerve fiber density was 2% of normal (you read that correctly) and what small fibers I had left were swollen and damaged.

While it was gratifying to know this was not all in my head (and believe me, that had been suggested in more than one doc's office), no direct cause for this has ever been found. An autoimmune post-infectious autoimmune process is suspected, but as all standard antibody tests were negative, very hard to prove (it could be that I was producing antibodies unique to me). Fortunately, this appears to have been a monophasic occurrence--the process burned out after destroying most of my molecularly similar fibers--and over the years I have experienced some slow, partial recovery (at my last skin biopsy. I was up to 11% of normal density), along with a dimunition of symptoms. I will likely always have some degree of symptoms, though.

More recently, I have also become concerned with spinal issues, as a weightlifting injury has left me with right trapezius muscle spasm and a C6-C7 right radiculopathy. This may be exacerbated by my other neuropathy, as many of us have reported that one neurological insult leaves us far more prone to others compared to "normals".

The whole process made me much more health aware, much more of an advocate, than I ever would have been--I went from not even knowing the word neuropathy to a fairly knowledgable non-medical person who gets to actually comment on some of the Cornell research studies before they're published and who's actually made a sort of second (non-paying

) career out of health advocacy.

I'm very outspoken about the positive aspects of boards such as this one for people who are alone with unusual conditions; the support is invaluable and the knowledge base overmatches that of almost any university research faculty. (You also get to hang out with other geeky autodidacts.) Most of all I remember how frightened and alone I felt at the beginning and how supportive people on the Internet were and I'll be damned if I'll let anyone else suffer through such fear and frustration and insensitivity if I can do something about it.

Otherwise, I have an ultramarathoning wife, an adopted basketball-crazy 9-year-old adopted Korean son, and am a Master teacher/tutor/trainer for a well-know test preparation company (geeky autodidact again).

I'm glad to be here and to be invited to be part of the team. (And short-winded I'm not.)

MelodyL · 01-23-2008, 11:24 AM

Hi All:

My name is Melody. I initially came to the Peripheral Neuropathy forum on Neurotalk, because my husband had Idiopathic PN. It’s been a journey. I am diabetic and developed neuropathy also. But I was morbidly obese and self medicated with food. I’m awfully happy to say I no longer have to do this. I’m also a dental phobic, but I’ve found a good phobia dentist. And yeah, I still have my phobic moments, but I’m much much better as I get older.

Perhaps, as we age, our brains grow and learn also and we can stop and smell the roses.

In my new way of thinking, anxiety and stress, well they have no place and when I find that I’m facing new challenges, I just find something to make me laugh. Believe me, the endorphins that go off in your brain, well, you will find that the pain is greatly diminished when you laugh at something.

Here’s a photo of me and my husband Alan.

Here’s a photo of me (I’m about 20 lbs less now).

We find that making videos on our webcam and doing the youtube thing, well it definitely adds to the quality of our lives.

I also make videos on the latest gadgets I've purchased. You'd be surprised how many gadgets are out there on the market that help people with arthritis.

Here's a link to my husband singing (you've got to see this), (leave a comment if you can, he'd love it!!!). I have other videos up also.

http://www.youtube.com/watch?v=N8qngHxdTrU

And yes, I have known tragedy in my life, believe me. We have a son who has been diagnosed with Aspergers Disorder. He left home 7 years ago and became a compulsive gambler. Haven’t seen him since but we do communicate. Very sad when one has expectations of one’s children, and you ultimately find out that those expectations are not going to be met.

Now I could have let this destroy me, but due to therapy and going on forums like these, well I’ve learned that we can’t change other people. We can only change ourselves and how we react to their behavior.

So live and laugh and enjoy the little things in life. I know that I do!!!

This is a terrific group of people.

ali12 · 02-06-2008, 06:16 AM

Hey everyone,
My name is Alison, I am 13 years old and I suffer from RSD in my left leg and right arm. I first developed RSD in my leg on the 16th March 2007 after an ankle sprain. After 4 months of physiotherapists telling me to stop imagining the pain, I was diagnosed with RSD, I felt as though my life had just ended. Immediatley after diagnosis my PM doctor performed a "Guanethidine nerve block", which caused me to lose my balance (I can't walk my leg shoots out in front of me)
2 months later my PM doctor prescribed me "Amitriptyline" to try and help me sleep but I suffered from a nasty side effect of "blurred vision", this resulted in a knock to my right arm. My arm began to swell, I got the burning pain, colour changes etc. 2 weeks later, I was diagnosed with RSD in my arm. The RSD in my arm has been into remission, but the RSD keeps flaring up when the weather is cold etc.
THANKS
Alison

Kitty · 04-12-2008, 07:57 PM

Hi Everyone!!

First of all I'd like to say that I'm so appreciative of the invitation to join the Welcome Team. Thank you so much for thinking of me.

I found Neurotalk during the mass exodus at MSWorld and cannot believe that I never knew about this forum. It's awesome! I love it here and it feels like "home". I was dx with RRMS in 2005 after a scary episode of double vision that lasted 4 months.

A little about me - I'm 47 years young and have two sons, 24 (25 on 4/17) and 20. My oldest son is a police officer here in the county we live in. My youngest son works a full time job and a part time job and swears he will have $40K in 4 years to start building a house.

My husband passed away suddenly in 2001. I lost my Mom and Dad in 2005 (same year I was dx with MS) and my older sister Susan just this past January. So.....I'm no stranger to loss and grief.

In spite of it all - I'm happy!! I have 2 wonderful sons, 2 great cats (who think they are human) and my faith. I've been in a couple of relationships since my husband's death that have disappointed me to the point of not wanting to ever marry again. I have learned to love my freedom and my life and have found that there is nothing wrong with being alone. I'm not lonely - just alone...if that makes any sense.

I feel so honored to be a part of this wonderful group of people. I consider everyone here a friend and hope you all feel the same about me. I know MS is a serious condition and realize what it can do - but sometimes we just have to laugh in its face and let it know that it cannot take away our sense of humor. Life is short...laugh all you can.

Koala77 · 04-12-2008, 10:08 PM

Hello everyone. I'm thrilled to have been asked to join the Welcome Team, and hope you'll all help me adjust to this role.

I have RRMS and was diagnosed way back in 1977, using the MacDonald Criteria. MRIs hadn't been invented then. We didn't have the advanced testing of CSF in those days either, so it wasn't until I had my first MRI, 25 years later in 2001, that my neuro was finally able to confirm the MS diagnosis.

My initial major exacerbation in 1977 lasted 7 or 8 weeks, and for the next five years or so, I had flares every 4-6 months, including my first of many bouts of optic neuritis. Now after all these years, I find that relapses only occur every 2 or 3 years, and recently I've had to start using a cane for stability because of many falls, and on bad days I use a rollator.

Unfortunatley I had major reactions to both the Interferons and Copaxone, so I just plod along now without any of them.

I retired from my career of 40 years as a registered nurse, last September. My age, MS, a recent diagnosis of osteporosis and other complex health problems, were all associated with my decision to leave work.

I live in Tasmania, Australia, and am married to a wonderful man who spoils me rotten. I have one daughter, 2 step-sons, and a beautiful grandson aged 11 months.

I look forward to meeting more of you and hope to do well in my new position. Thank you for having me here on NeuroTalk.

tamiloo · 09-16-2008, 09:37 AM

Hi, my name is Tammy and my sweetheart is Craig, aka Olhipie. I am my husband’s best friend and full-time caregiver. We were married in May of 2001. He was diagnosed in 1986 with Relapsing Remitting Multiple Sclerosis. He now has Secondary Progressive Multiple Sclerosis. In 2006, he went into Septic Shock from a UTI and I almost lost him. Shortly thereafter, he had a Suprapubic Catheter put in and has been infection free since then. He is full-time in a wheelchair. He has cognitive problems, which makes many things very challenging. A few more challenges we face is his short-term memory. It isn’t easy to watch a grown man forget how to operate the TV remote…

Between us, I have a son and a daughter and Craig has two daughters and a son. When we were married I became an instant Grammy. He brought into the mix three grandsons, and one granddaughter. My son 24, lives with us and he is my angel…who will somehow show up when Craig has fallen to get him back where he needs to be. This past year we moved my Mom, who is 83 in with us, which brings its own challenges. My daughter moved next door into Moms house…lots of great support close by.

I also have disabilities. I was born with Spina Bifida Occulta. I have had four surgeries…disc problems and fusions. I will be having what I hope to be my final surgery on Oct 6th. I too am on disability with PTSD and Fibromyalgia factoring into the whole mix. I am very fortunate and blessed that I can walk. I do live everyday with great pain, but am able to care for my family and myself to a point. I will soon be enlisting the help of home healthcare to help me with my honey.

My honey and I watch out for each other. He is so good and patient with me. I do everything in my power to make everyday his best day so far. Sometimes that means just going for a drive together, heading for his favorite ice cream shop and of course heading to the movies at least once a week. We know how much we mean to each other and that when we took those vows that said through sickness and health...the good the bad and the ugly...we do our best to keep them. Yes, we both get frustrated with our bodies and our restrictions, but we never get mad at the other person because of the great blessing to serve each other.

I am so grateful for the great opportunity have to be part of the Neuro Talk Team

I say welcome to the family to you all!