"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

Thanks for the add. I was diagnosed with M.S. in late 2003 and have been symptomatic since 1998. You have provided so much good information here and I greatly appreciate it. Thank you!!

Thanks for starting this up and for inviting me to join. All your efforst are much appreciated!