ANGELS HELP FOOL ON THE HILL..click to read 32 comments




"HELP ME!!!! I'm scared...I have a 19 month old daughter" - JAIME....click to read 29 comments




"JEANNINE IS OUT OF THE HOSPITAL: She needs support"....click to read 22 comments




"HOW IMPORTANT IS IT TO TAKE SHOTS?" - Genesis....click to read 41 comments






"I HAVE DAYS WHEN I'M SO LONELY THAT I SIT IN MY ROOM AND CRY" - Mojo...click to read 32 comments




"I almost feel that my family would be better off if I weren't here"...CLICK HERE TO READ WHAT THE ANGELS TOLD SHER






"I just got some bad news on trying to refill my Provigil" - JILL...click to read 21 Angel Comments






"Is anyone else is getting the stabbing "brain pain" as I call it - MEGAN"....click to read 32 comments






"I have been sad lately because my memory feels like it's draining away"...CLICK TO READ WHAT THE ANGELS TOLD 17 YEAR OLD ROSEANNE





17 YEAR OLD LIZ HAS MS FATIGUE AND WONDERS WHAT MEDS OUR FRIENDS R TAKING...click to read 40 discussions





"FRANCINE HAS HELPED MANY FRIENDS: NOW SHE NEEDS HUGS!"....click to read 31 comments

FOR IMMEDIATE RELEASE

ADULT PIG STEM CELLS SHOW PROMISE IN REPAIRING ANIMALS' HEART ATTACK DAMAGE

Johns Hopkins scientists have successfully grown large numbers of stem cells taken from adult pigs' healthy heart tissue and used the cells to repair some of the tissue damage done to those organs by lab-induced heart attacks. Pigs' hearts closely resemble those in humans, making them a useful model in such research.

Following up on previous studies, Johns Hopkins cardiologists used a thin tube to extract samples of heart tissue no bigger than a grain of rice within hours of the animals' heart attacks, then grew large numbers of cardiac stem cells in the lab from tissue obtained through biopsy, and within a month implanted the cells into the pigs' hearts. With help from a blue-dye tracking system, the scientists have shown that within two months the cells had developed into mature heart cells and vessel-forming endothelial cells.

"This is a relatively simple method of stem cell extraction that can be used in any community-based clinic, and if further studies show the same kind of organ repair that we see in pigs, it could be performed on an outpatient basis," says Eduardo Marbán, M.D., Ph.D., senior study author and professor and chief of cardiology at the Johns Hopkins University School of Medicine and its Heart Institute. "Starting with just a small amount of tissue, we demonstrated that it was possible, very soon after a heart attack, to use the healthy parts of the heart to regenerate some of the damaged parts."

Marbán cautions that no overall improvements in heart function have yet been shown in these studies, which were not designed to establish such changes and used relatively low numbers of infused cells (10 million or less). "But we have proof of principle, and we are planning to use larger numbers of cells implanted in different sites of the heart to test whether we can restore function as well," he says. "If the answer is yes, we could see the first phase of studies in people in late 2007."

The latest Johns Hopkins findings are scheduled to be presented Nov. 13 at the American Heart Association's annual Scientific Sessions in Chicago.

They are believed to be the first results in animal studies to show that so-called cardiac stem cell therapy can be successfully applied with minimally invasive methods to circumstances closely resembling those in humans.

Scientists say the results build on earlier studies with cardiac stem cells in mice and humans that demonstrated success in regenerating infarcted heart muscle and restoring heart cell function post-infarct.

For the study, cardiac stem cells were extracted by tissue biopsy from eight pigs whose main arterial blood supply was tightened for more than two hours, duplicating the effects and damage caused by heart attack.

Using techniques developed in Marbán's lab, researchers extracted about a million cardiac stem cells from undamaged heart tissue, growing them without the use of potentially dangerous chemical stimulators.

After three weeks, the stem cells turned into spherical balls of cells that mimicked the electrical properties of heart muscle cells. The so-called cardiospheres yielded on average more than 14 million cells.

Within a month after the initial heart attack, a catheter tube was inserted into an artery in the pig leg for infusing the cardiospheres. Previous research had shown that they would on their own migrate to the damaged zones of the heart. Marbán's team was able to confirm this because they had labeled the stem cells with a gene that codes for an enzyme producing a blue dye, which could be seen under a microscope.

Months later, when researchers examined the hearts to see if any damaged tissue had been repaired, they found blue spots indicating where the stem cells had taken root.
Closer examination of results revealed that stem cells had matured and grown in the border zones of the damaged area, where researchers suspect both dead and living tissue mingle and some blood supply remains.

"The goal is to repair heart muscle weakened not only by heart attack but by heart failure, perhaps averting the need for heart transplants," says Peter Johnston, M.D., study author and a Reynolds Foundation postdoctoral cardiology research fellow at Johns Hopkins' Heart Institute. "By using a patient's own adult stem cells rather than a donor's, there would be no risk of triggering an immune response that could cause rejection."

Hi Stan... =)

My name is Francine Drilon and I’m a 32 year old kindergarten teacher In 2003, I was diagnosed with Multiple Sclerosis. I want to thank you profusely, for allowing me to join this group. I’m from the Philippines and we don’t have a lot of information about MS in my country. Whatever I’ve learned about MS, I’ve gotten from my doctors and the internet. As far as I know, we only have one MS support group. I’ve called them twice, and I was told that this small group meets once a month to socialize. There is no information dissemination of any kind, no networking or actual “support”.

I look forward to reading the blogs and articles even though most, if not all, the (new) medication and therapies (sometimes discussed), are not available here.

My battle with MS started with a sore pain in my wrists. I thought it was because I was spending too much time on the computer. The pain didn’t improve and I was beginning to worry. I thought it was Carpal Tunnel Syndrome. After a few days, I started experiencing the same pain on both feet. I was beginning to limp and that’s when I knew I needed to see a doctor. I went to Saint Luke’s Medical Center. After a few minutes of the usual Q&A with the doctor, she said I needed to see a neurologist. I thought, “What?!?! A neuro?! Isn’t that a brain doctor??! I need a brain doctor for sore wrists and a limp?! What’s going on?!” I made an appointment with the neuro and saw him the next day. He asked me more questions and gave me a long list of tests I needed to go through. He said he would wait for the results the same afternoon, and then decide whether I needed to be confined. I said to myself, “Ok, let’s do the bloody tests and get this over with!” I was in pain and the pins and needles sensation was beginning to advance towards my legs.

The tests consisted of needle poking and what seemed like electric shock treatment! It was agonizing. I have a high tolerance for pain, but this was almost unbearable. I was OK with the whole idea of having needles injected all over my body, but I couldn’t bear the doctor’s hand on my skin. The slightest touch felt like I was being burned alive. There came a point when they needed to insert needles in my spine, but they hesitated because they knew I would shudder as soon as the doctors touched me. They said they had no choice but to attempt to insert the needle without touching any part of my skin. “Attempt?!” I, of course, dreaded the thought that they would miss and leave me a veggie. Needless to say, I survived that ordeal. The tests were over, but I was still in pain... After half an hour from the last needle poking, the doctor said I couldn’t go home yet. “Oh brother! What now?!?!” I had to be confined and more tests followed. The pain was up to my chest in a matter of hours. I got progressively worse. My hands and arms... my feet...legs... chest... and neck, all hurt like *#&$@#! I had difficulty breathing. It felt like I had a belt tightly wrapped around my chest. I couldn’t move from the neck down! Several neurologists and neuro-surgeons came to see me. They said I had a demyelinating disease. I asked them to pretend that I was a 5 year old and explain to me what exactly that meant. I was told that the myelin sheaths of my nerves were depleting. ”Hmm... How did that happen?” I had to undergo 3 MRI scans and more tests. I couldn’t walk. I couldn’t write or eat on my own. They said that I was hypersensitive, which explained why I physically ached when people spoke louder than a whisper. I ached when the lights were on. I was sensitive to touch, sight, and sound. “Wow! I had super powers!” If I didn’t experience pain, I could be related to superman!

After being hospitalized, a lot of steroids and a dozen other meds, I was finally released. Now I had to get Physical and Occupational therapy! I had to learn how to walk again. I had to learn how to write, feed myself, button my shirt, comb my hair, and do all the basic everyday functions I took for granted. They said I had to desensitize my nerves. I had to retrain my brain and convince it that all these actions were not harmful... not painful. My therapist would say, “Tell your brain... to tell your arm... to tell your hand ... to move this marble.” There was a moment when I thought, “Didn’t I see this in the movie Lorenzo’s Oil?!?!”

They made me dip my hands in warm paraffin wax, move items from one tray to another, practice with a pen, a spoon, a comb... They even made me dip my hands in a pail full of sand. They hid tiny objects in the sand and then showed me pictures of each object they wanted me to find (using my hands). I must tell you that that was difficult and excruciatingly painful. I cried because of the pain. I cried because I couldn’t believe that looking for a small car in a bucket of sand would be so hard. I felt so useless and helpless.

I had to stop working for six months and focus on getting better. I felt dizzy and weak. I experienced chronic fatigue. I had to sit on a chair in the shower while my mom bathed me. I couldn’t even shampoo my own hair! I needed a wheelchair, so working or going out with friends were totally out of the question. I stayed home, went to the hospital, and went back home. I suffered from insomnia. I couldn’t sleep and I stayed up till six or seven in the morning. I was hurting, frustrated, lonely, bored, angry, and depressed. The doctor told me early on, that there is such a thing as MS depression. They said it is due to the “unpredictability of the disease.“ I thought maybe, compared to cancer, with which we are more familiar with the stages and what to expect, MS is far different. We can be OK today... and then totally helpless tomorrow.

As soon as I started walking on my own, thanks to the steroids, I went back to work. Still feeling the pins and needles, still feeling weak and sore, I was determined to go back to my job and my students. Since there are no visual symptoms of MS, it was difficult to explain to people what I was going through. I was sick of answering the same questions about what was going on with me. I was tired of hearing, “Really? But you don’t look sick.” I wanted to say, “Do I need to lose my hair? Lose an eye? Lose weight? Gain weight? Sever an artery perhaps? ... just so you believe that I’m suffering from a progressive disease?” But I always ended up saying, “Well, what you see and how I feel are two different things.”

I worked from October till March of 2003. I suffered another attack come April, and then I was back in the hospital. Three more MRI scans and a couple of second opinions later, I was diagnosed with Multiple Sclerosis. They found lesions in my spinal cord. The doctors said that I should not take it lightly. “There is no known cure for MS”, he said. “The medication is given to address the symptoms, nothing more.” I took medicine for pain, nausea, insomnia, and even meds for epilepsy. My doctors suggested that I quit my job and consider a change of lifestyle. I needed to avoid stress. And since I live in a tropical country, the heat exacerbated my condition. They told me that I should consider moving to a colder part of the Philippines or another country.

As much as I wanted to give everything up... I could not. I told my doctor I couldn’t quit my job because I had no way of paying his doctor’s fee! I wouldn’t be able to buy my medication or pay for my other bills. “God! I would love to focus on myself for a change... but I can’t do that right now.” I did not have medical insurance, and it seemed as though I could only file for disability benefits with Social Security if I lost my head! We don’t get disability benefits that easily here. As long as you can stand, walk, BREATHE... you don’t get anything! I really had no other options but to teach again .

It is now 2006... And yes, you guessed it, I’m back to work. I teach 2 major subjects and 3 minor ones. At this point, I'm taking neuropathic anti-convulsants and morphine every 4 hours. I also take medication for my nausea and really strong sleeping pills prescribed to patients with Schizophrenia. I could be a stock holder of our local drug store! Hahaha! My neurologist and Pain Management doctor still suggest that I stop teaching and finally move to a colder climate or maybe look into a program for MS patients in the States. The heat weakens me and dealing with the pain and chronic fatigue is difficult. I'm still trying to improve my penmanship, but my walking has greatly improved. Each day can be agonizing. In fact, typing this letter is making my fingers sore. But, it’s nothing I can’t handle. I will not be defeated by this. I refuse to give up on living my life the best way I know how.

My father taught me, that in life, it is essential to make peace with one’s pain. I agree with my dad. I have made peace with the physical and emotional pain MS has given me. After reflecting on my own mortality, I have found many things to smile about each day. I find joy in seeing my friends every single week. I embrace each time they come to visit me for coffee laced with meaningful conversation. I treasure DVD marathons with my mom... and singing with my dad... or receiving little notes from my students. I value my alone time, which is when I can read about Gustav Klimt... watch the moon rise... paint pictures... listen to cello music or India Arie. I look forward to corny television shows and even pathetic ones! I can’t wait to take long baths... wash my hair... and button my shirt (even if it’s painful and tiring)... I get excited when I teach my Reading class. I get even more excited when I start preparing elaborate lessons about Henri Matisse for my Art class! I’m in pain... but I’m alive!

I have basic medical insurance now. Unfortunately, it doesn’t cover any of my medication or major medical exams. It only offers free hospitalization, if and when I need it. It doesn’t even pay for my visits to the doctor. I still have no disability benefits from the government. I still suffer from fatigue everyday, especially when it’s hot. I still feel the pain in my entire body. I get nauseated easily. My vision is getting hazy. My short term memory is starting to fail me. I still have those involuntary twitches which causes my hand to launch my spoon or pen into outer space! I still can’t sleep. It’s three in the morning now. But despite all of these and more, I continue to EMBRACE LIFE. I want to be the best daughter, friend, teacher, girlfriend.......and LOVE LIFE AS MUCH AS I CAN, FOR AS LONG AS I CAN.

After all, having this disease is NOT A DEATH SENTENCE... It’s simply LIFE MODIFIED. Thank you again, for letting me join your MySpace group. You have no idea how much you have helped me.

God’s choicest blessings to you... today and always... – Francine

Hey Stan!

I met another 21 year old named Fallon on your MS News Channel's MySpace Page!

We now talk everyday, so that's awesome to have connected with someone who is basically the same as I.

We are both 21, both have MS and both are named Fallon... ironoic actually, but yet we have been talking and its awesome, we met on your page!

Fallon lives in New york and I live in Arkansas...so very far apart from one another. But we email each other daily, and she has been my inspiration . I am enagaged and will be married October 27, but it is so wonderful that I have met Fallon. It is rare in Arkansas to meet others who have Ms and very rare that they are the same age as myself or around my age. I know in my heart I am not alone in my daily struggles, but yet with someone your age,,,it helps you more than anything!

My fiance george is standing next to me in the photo. He is my best friend and showed me that MS isn't who I am, no matter how i feel, that the disease doesn't distingish my character and who I am.

I stay positive, outgoing, and never question things that i cant control. Thats the best advice I can give to anyone. Stay positive, dont sweat the small stuff and always smile!

I'm 21, have cancer and MS and have a spinal surgery under my belt, but I grew up! I now know what is truely important out of life...and its the best feeling in the world.

What you do is so wonderful for everyone of all ages. I just thank you a million times for what you do. A lot of people ae in the dark on MS as i was at first. You help so many with just a web site. Thank you on behalf of myself and so many others with MS!

*hugs*

Fallon


CLICK HERE & VISIT OUR 1,404 MySpace FRIENDS @ MS News Channel



A POEM WEITTEN BY FALLON:


I'm feeling quite tingly all over today,
It's really quite nice in a strange sort of way,
But then numbness creeps in, the tingliness goes
And all of a sudden I can't feel my toes.

By mid-afternoon it has spread to my knees,
Best go to the Doctor, "An appointment, please",
"Let's just wait and see as I haven't a clue,
It'll probably get better, or it may be just flu."

Two days later and still feeling numb,
Back to the Doctor, (as advised by my mum);
"Altered sensations, that's what you've got,
It'll sort itself out"; Has he lost the plot?

The next week, I'm back and at last my GP
Says see a Neurologist (whatever that may be);
There's a 3 month wait? Oh well what's money for?
The very next week I'm knocking at his door.

He prods me and pokes me with hammers & pins
He tests me for weakness and guess what, he wins;
You'll need a Lumbar puncture and an MRI scan
At last someone believes me, he's a very nice man!

The scan comes back normal, so I must be OK,
But first there's the spinal, oh please go away.
Inflammation shows up in my spinal cord,
"It may come back", I'm told, "of it's own accord".

"Now if it comes back, and it probably will,
Then you'll have MS, but not until.
So you've probably got it, but then maybe not,
Don't think about it", well at least not a lot.

A few months have gone by and the tingle's come back,
This time in my arms and a little round the back.
The bathroom it seems is my favourite place,
And suffice to say I'm not washing my face!

So back to the Neurologist, that very nice man,
Who says, "Well; this is it" (as nice as he can).
So here I am with "official" MS;
How will it progress? well that's anyone's guess.

Live day to day, you can't alter fate,
If you're tired, go to sleep, the washing can wait,
One thing I know, and I hope you can see;
I've got MS, but it's not having me!

"MS is a part of our lives but we dont have to let it be the only part" MIA

"CLICK HERE TO VISIT OUR MySpace PAGE...BECOME A FRIEND...SHARE YOUR MS EXPERIENCES WITH MIA & 1,404 OTHER FRIENDS!"










"Dear Stan...

Thank you so much for MS NEWS CHANNEL...As a 26 year living with the dx of MS for 5 years..things like this really help.

Im a mother of 3 but they are of the fuzzy persuasion.

I work at GE as a Field Service Coordinator..Sounds fancy schmancy i know=) I like to think of myself as a fun outgoing girl who loves life

I recently had a severe exaserbation of Optic neuritis that also robbed me of my ability to walk without a cane. I rememeber telling my best friend..I have never felt so...disabled..It was one of the worst feelings in the world. If anyone needs to talk never hesitate to message me..I am always here....God Bless!!"


Have a MS story like Mia's to share with others? Simply go to our "MySpace Page" and write Stan a note!

Hi Stan,
Thank you for accepting us as friends! :-) I was recently diagnosed with MS and I look forward to learning all I can. I love your page and appreciate what you are doing! I look forward to getting to know you!
Blessings,
Mary

Solu-medrol anyone?


















It's amazing how our vocabulary gets incredibly expanded when your health is not in tip top shape. You learn so many new words--all be it, words I would rather not know, but that's a whole different story.

My favorite new word is "solu-medrol."

Why would this be my favorite? Only because solu-medrol is a steriod that I have been on for a couple of days now. And no, it's not an oral steriod--it's an infusion based steriod that required a catheter to be stuck into my arm and then I receive one daily infusion for an hour at a time. What's nice about the whole process is that I don't have to go to the hospital--it's all done in the comfort of my own home. I never realized how great the healthcare system is--but now I rely on it so much that I am amazed at how awesome they treat people with chronic illness.

Why am I am steriod infusions? Unfortunately my first MS relapse didn't cause a remission like most normal relpase-remitting forms of MS. I have gone directly into a second relapse with no recovery time from the optic neuritis. This time I have been dealing with numbness all over my body. At first it was just annoying --not being able to feel my fingers, abdomen, spinal cord, feet, etc...it comes and goes but the progression of the problem as increased so much in the last 2 weeks that my doctor is worried that I might not be able to walk down the isle at my own wedding on Sept. 2. Now if the numbness didn't scare me, the thought of not being mobile on my wedding day sure scared the shit out of me. So, my only option to speed up the healing of whatever inflammation is going on in my CNS, solu-medrol is my new best friend.

One thing that has helped me tremendously during this whole ordeal has been working with a massage therapist. It's amazing how they help me feel better. They target the areas of my body that are totally disconnected from one another and help them get some feeling and sensation. Unfortunately it's not long lasting but it sure does feel good for a couple of days afterward.

thanks for adding me Stan!

my screen name in french means the more things change, the more they stay the same. I really dont know much french, but I saw this in a book and love the way it sounds and love the meaning.

Thank you for providing such an awesome resource for MS News, it means so much!


~*~Alissa~*~

I've been on Avonex for 14 months now and the side effects got way better after about six months. I think I will still keep it in the fridge like I've been doing. I usually take it out about an hour ahead of time when I take my two pre-shot Aleve tablets.

Thanks for this great MS resource.

I've just joined here, so here's a bit about me.
Oct 25 2006 7:42 AM

My name is William (Bill) Roberts; I am 57 years old, was diagnosed with RRMS in 1998, and upgraded to Secondary Progressive in 2002. My chief symptoms are (were) extreme mixed sleep apnea, COPD, inability to walk, total deafness in my left ear, and inability to concentrate for any period of time. I have been treated with Avonex, Copaxone, and Rebif of the ABCR drugs, chemotherapy (Cytoxan, plasma exchange, as well as many, many sessions of IV steroids (Solumedrol). As of June, 2005, I was on oxygen 24/7, wheelchair bound, having a flair of my MS on an average of once a month, and doctors had told me that my breathing difficulties, caused by the MS, would ultimately result in my demise. I had also ballooned in weight to 289 pounds. Two of the top neurologists in Birmingham consulted and agreed that, while continuing on Rebif, I should begin taking a week of IV steroids every three months, regardless of my condition. I did not feel that the steroids were offering enough positive results any longer, and I did not want to take any more. I asked if they would mind my getting an alternate opinion from another neurologist. They agreed.
My new neurologist reran all of the standard MS tests, including MRIs. After studying the results, she suggested I stay on the Rebif and see what the next two months showed with regard to flares or episodes, then to probably go back on chemotherapy. I asked her, at that time, if she would prescribe a drug LDN (Low Dose Naltrexone), for me. I had read a great deal about it and talked to a number of MS sufferers who had improved with the use of LDN, a medication that is FDA approved as a treatment for Heroin addiction and alcoholism. She said she had never prescribed it but had also read a lot about it. She agreed to prescribe it.
I began, around the first of July, 2005, with 1.5 Mg per day for the first week, then increased to 3.0 Mg from then, on. I also stopped taking the Rebif at that time. While I did not notice any improvement for the first three months, I also had NO flares either. Then, I began to notice that my breathing was improving- I could take time off from the oxygen for extended periods of time; the strength in my legs and arms was improving- I began to be able to take short walks with a walker, then longer walks, then changed to a cane, then actually walked to the bathroom without assistance! My sleep began to improve, as well. Improvement continued and actually increased, so that when I went for my six month check-up with my neurologist, I did not even take my cane, and I blew away my neurologist by acing all the tests. I am now driving again after four years, walking totally without assistance, and have dropped my weight down to 232 pounds. I hope to get back to my normal weight of 195 by year's end. In April, after my wife was diagnosed as a borderline diabetic, I walked in a “Walk For Diabetes.” I walked just over 21/2 miles, with no assistance, beginning with the first group out and finishing with the first group in! I was both pleased and proud to accomplish something else I never thought I would be able to do again. Now, I plan to spend the summer building a fence in our back yard and re-landscaping it.
LDN is NOT a cure for MS. I still have it, and I still have issues with it that I have to deal with everyday, but I attribute my miraculous improvement to LDN, attitude, faith, and my new neurologist's willingness to prescribe LDN for me. It is allowing me to do things I never thought I would be able to do again, and if it were to become an approved treatment for MS it could not only possibly do the same for others that it has done for me, but it could also possibly free up millions of dollars that could be used to find the cause of diseases such as MS. Finding the cause for a disease brings researchers MUCH closer to finding a true cure.
Pharmaceutical companies need to be able to make a profit off of the drugs they develop through their research. The cost of such research is very high, and LDN, a very inexpensive medication, will not produce the profits those companies need in order to warrant their doing the trials to get it approved for MS, as well as ALS, Alzheimer’s, Parkinson’s, AIDS, Crohn’s, many types of cancer, child autism, and even Rheumatoid arthritis. Those of us who have received better results from LDN than the other approved treatments are working diligently to raise funds for trials of LDN for MS, so that it may gain FDA approval for us.
Websites- http://www.lowdosenaltrexone.org and http://www.ldners.org

Thank you. Sincerely,
William (Bill) Roberts

http://www.myspace.com/thatremindsme323

hi

What an awesome site,glad I found it.

I have MS, been diagonosed for 6 and half years, just recently got out of my last flare up, nothing big, but it all still stinks!!

Just wanted to say hello and thanks for having a great site.

Take care
April

Thank you!

My sister in law has MS and many of my friends here on myspace have it also so I want to know more.

Thank you for taking so much time to gather this information.

"Ok, if you read my profile, you know MS is a cause that is very close to my heart for personal reasons ... "






www.myspace.com/garthbrooks

hey stan i was trying to add you as my friend but i cant add you.. would be okay if you add me up? my email is ronaldgoco@yahoo.com

i am 25 from the philippines with MS diagnosed on june 2001. thanks a bunch..

take care and God Bless

Ron

"I was diagnosed with MS last year and I have had some ups and downs since. But hey life is good!!!

I am HAPPILY married 2 a wonderful man and have 3 BEAUTIFUL kids!!! I am also a stay @ home mommy, which can be pretty hectic at times." - PATRICIA

"My name is Samantha and i am 15 years old.

My mom was diagnosed with MS about 11 years ago.

I give my mom her shots every-other night

Although life is harder for my mom than most, she loves life and does as much as she can. Our whole family participates in the annual MS walk in San Diego every year. My mom enjoys walking, and working out; even with her disease. She is a person who refuses to break down, and sometimes acts as if she doesnt have a disability at all.

















































I never realized how many people have, or know other who have MS until i became more involved with MS groups and events. I think it is really important that people with MS know that there are others out there going through the same things, and that no one is alone" - Samantha

what a wonderful source you have put together
bless you!

Ang




I found a gem here right on myspace
If you know of anyone that has this disease
or are one of the unfortunate ones with the
disease - no better site exists to find out the
latest information on new drugs and research
and to be among others that are living with it

My motto I may have MS but it will never have
Me!

Check out my friend Stan's masterpiece
what a better way to show love to his son
that also has MS than to have such a wonderful
resource for all - Thank You Stan

click the pic below for a link to the site!

Hi Stan

I am a 34 year old single female. I work at a local University, go to graduate school full-time, do a lot of volunteering at the Victory Junction Gang Camp, the Ronald McDonald House, and the Central Carolina Chapter of the National MS Society.

I was diagnosed with MS after 13 months of "persistence" on May 17, 2006. I started by having a pain come down from my head into my jaw and the tingling and numbness started in April 2005. I went from my dentist who told me nothing was wrong after xrays (only one cavity in my lifetime) to my neurologist who said "this is not right". I see a local neurologist in GSO (airport code for Greensboro, NC) already for migraine maintenance. I've had migraines for years (since high school). I hadn't had a CT scan in years so he ordered a MRI locally since the numbness and tingling persisted in my face, head, and teeth of all places. When he received my MRI films, he read them himself and saw evidence of white lesions on my brain and called me himself on my way out to lunch one day. I always think it's pretty bad when the doc calls you himself haha. He told me I might have MS and he needed to refer me out to another hospital which he wanted me to go to WFU (Wake Forest University in Winston-Salem, NC). This was in May but I couldn't get into see Dr. Jeffery (Wake Forest).

So, I panicked and got an appointment to see Dr. Barrie Hurwitz at Duke Neurology Clinic (he is supposedly their MS specialist). I went to Duke on May 9th, 2005 and had a bad experience. He blamed my symptoms on my migraines and said that was most likely why the lesions were there. He sent me back to my neurologist in GSO and wanted him to do a spinal tap, evoked potentials (I think) and a spinal MRI. However, my neurologist, Dr. Adelman, thought Duke was going a bit overboard and decided to rule out my migraines as a cause which I didn't think was a bad thing considering I wasn't having problems walking or anything ambulatory with the "MS".

Finally over the course of a few months and a couple of drugs later (Topamax and Atenelol everyday), my migraines are under control. However, in the fall of 2005, my symptoms (numbness and tingling) flared back up which I thought was just not normal and I kept being persistent with Dr. Adelman (local guy).

Anyway, the symptoms continued into 2006 and finally my last appointment with Dr. Adelman was in April 2006. He said I think we need to refer you back out again. I asked him what his professional opinion was even though he was not a specialist. He said I think you have MS or another version of a demyelineating (sp?) disease. He said this time I was definitely going to Wake Forest and to Dr. Jeffery. SO, thus the process began of having all my records faxed over and Dr. Jeffery reviewing them to see if he would accept me as a consult/patient. Finally, I was able to see him on May 17th of this year.

For the first time in my life, I was seen on time at the doctor's office. I spent about 45 minutes with a resident. He did my physical exam and asked a bunch of questions. He found nothing wrong with me physically. So, Dr. Jeffery comes in, the resident gives him the low down on me. I told him how I went to Duke and got treated rudely because the guy thought I was nuts for thinking I had MS. He knew Dr. Hurwitz there. Evidently there had been complaints about Duke to him and to my local neurologist as well. Dr. Jeffery had me stand up with him and look at my MRI (which Duke never showed me that in the same room together). He pointed out all this stuff to me and said "you could have a much worse case of it". "Of what" I said. "MS" he said. "You mean to tell me in less than five minutes you can walk in here and tell me I have it and that moron at Duke let me suffer?" He said "You mean to tell me no one has told you before now that you have MS?" He was mortified. So thus the rest of the appointment went. He did some physical testing himself. He found an extremely slight strength difference in my two legs but nothing that affects my mobility. Started going over the differences in medication, and put me on Betaseron which he says is the best. Ordered an MRI a few days later to see the difference in a year since I hadn't had an MRI in a year. Thus, I was out the door.

I had my MRI and came back to WFU on June 29th. Luckily, nothing had progressed in a year. He said none of my white lesions on my brain had developed into black holes, which evidently indicate disability in the future. I still have no ambulatory problems with my arms and legs. I feel like I am im remission although I am starting to have some slight numbess and tingling in my face and hands and feet again. I have RRMS (Relapsing Remitting MS). I go back to see Dr. Jeffery on October 4th. After that, every 6 months, and an MRI every year. I can't see my local neurologist anymore either. I guess the MS is most important and plus he can treat me for my migraines anyway.

A Betaseron nurse came to my house and showed me how to do the injections which are every other day. I just recently last week got up to the full cc dose. I did the dose titration so I did a .25 step every two weeks. I suffer from overheating and some body aches, but other than that I seem to be handling it much better than most folks I read about on the internet. But in my lifetime, I've had to take a lot of medication due to sinus problems (I've had surgery before), TMJ, and migraines. I seem to have a much higher tolerance for medication so I don't know if that has helped my adjustment to the injections or not. Then again, I may not know what I am talking about.

"Live life to its fullist, Dont let the MonSter win"

9/15/2006 2:09 PM

Dear Stan,

I've only surfed it for a day and I'm in awe. Thanks for starting it.

The information you have is vital, I have had SPMS for 4 years and I learned more on your site in just one day, than I have in the years I've had MS. There is so much valuable information and I'm spreading the word to your site.

Thanks for all you are doing.

Thanks Stan for all your hard work and great info about MS... I have MS as well .... good to know I have a great place to go.... ((hugs))



I was diagnosed with MS on August 2000

CLICK HERE TO VISIT DJ SKY & OUR 880 OTHER FRIENDS





















































"Thanks alot for hittin' me up Stan!

I'm glad you've made a page like this!

Check out the song on my page,
it's my battle diss to MS informing it that it's picked the wrong host to mess with!

Hope alls well!

Stay up and keep me posted!"

yup!
SKY

I have been diagnosed since I was 22

















































Hi Stan,

Thanks for The MS News Channel!

I feel lucky to help the newly diagnosed and the people who have been diagnosed forever find out information.

For many people it seems like being dxed with MS is scary to terrifying. I hope that my site can make it a little less scary and help put a face on the disease.

I think it is crucial for people who are dxed with MS realize that they are the same person they were before the diagnoses and they most likely have been living with this disease for awhile.

I think the words of advice that I have for the newly dxed is for them to realize that they are the same person they were before the diagnosing.

I think that it is important for people who are newly dxed to find support for dealing with the disease. Family and friends can be a great support, but I think that it helps to have someone else who has been dxed. There is understanding that happens, in my opinon, with people who deal with MS everyday.

:-)
Carrie