Hi Newbys....Please Introduce Yourselves
 

~~http://home.earthlink.net/~sal.pal/s...tures/welc.gifTO NEUROTALK..http://home.earthlink.net/~sal.pal/s...es/smiley2.gif

I am Sally, and have been DX with MS for 32 years, with symptoms dating back to 1964. :eek: Yep! Long Time. The good news is, I was in remission for 18 of those years. I am now SPMS, can still walk, but use a scooter around the house and for outside distances. I walk as often as I can, so I won't lose the ability.

I am on LDN (for 3.5 yrs) to steady my MS and Paxil for Anxiety. I have used Avonex and the Copaxone in the past.

Tell us about yourself and ask any questions you want. We are here to support you in your fight and your coping with MS. We might even have some fun, while you're here.:D

Best Wishes,

sally...i had to jump in here to say....

your dancing pumpkins are the absolute best!!!! LOL. i have sat here just watching and laughing. :D hehehe..i'm gonna have to keep your thread bumped up just so people will look at it. laughter is the best medicine. :D

Thanks Curious, Glad you like it.:D

I was hoping that Our Mod could make this a sticky.

I am brand new /hello
 

:confused: I am a brand new member my name is judylouwho, that is pretty annonimous isn"t it .:p I am just trying out this site and how to use the program :eek: :D and I am finding it kinda intimadating with all this avators because I have no idea how to do all this .I hope I do get the hang of this it could be really supportive to me and my family ......:D judylouwho Can someone direct me in how to use this program it is so new and awesome I can"t wait to learn moreI have had ms for many yrs I am a 55 yr old female and on betaseron injectable and take baclofen for spacticity and for pain in my legs . I use a walker most days and a power chair for long distance I have had ms since my dxd in 1989 I have a lot of memory issues it varies from day to day and if I get too tired or over do it I am really badly affected judylouwho:D

Well Hi, Judylouwho, so nice to meet you.:)

What do you need to know, so far you are doing well. You got to the right place, didn't you.:D

If you want to add an avatar or a signature or make any changes to your bio, go to the top of this page and right under NeuroTalk is User CP. Click that and it will take you to your profile....on the left is a list of things you can do, just click one of them and make your changes or additions.

If you have any trouble, let us know and we will try to help.

Welcome to your home away from home. I'm looking forward to talking with you soon.:)

Hugs,

Hello Judylouwho, Welcome!

I'm glad to see you joined us:D

Welcome to the board, JudyLouWho! :)

Cherie

:) Hi Judylouwho,

WELCOME TO THE NEUROTALK FORUM COMMUNITY! :D

Please take your time just looking around and when you feel comfortable we can't wait to read your posts and sharing your situation and experience. MS since 1989 so I guess you've seen a lot in the medical community change over the times.

Don't be shy about sharing some of that with us and comparing experiences for the rest of us.

Again, thank you for coming and welcome.

Thanks so much for welcoming Judylouwho. I believe she vacated to the OCD Forum. I think she was confused, and came to the wrong forum.:o :o

Howdy All
 

My name is Mark. I have had RSD for the last 6 almost seven years and was recently diagnosed with neuropathy and now MS. As my Mom would say "I just sat down to eat dinner and all hell broke loose" LOL. :D I have been a member of the old Braintalk forum since 2004 until it crashed here back a few months ago. I usually hang out next door with the Reflex Sympathetic Dystrophy gang but decided it was time I marched myself over to say hello and meet you all. To be honest with you I have been peeking around the corner of the door for a few weeks now but I guess maybe I felt that if I came into the room I would be relenting to MS and I wasn't quite ready yet to admit to myself that I had it, but I'm okay now. So anyway, I'm 43 living on Cape Cod trying to get my SSDI approved for the second time (with a attorney's help this time) and taking life one day at a time at this point. I now walk with a cane but find it difficult to keep my balance.

The worst times of the day for me are first thing in the morning (I can't even get out of bed and the pain levels are unbelieveable) and late night, I have tremors and they jerk me around bad in bed and make it almost impossible to get any descent sleep.

All in all I am so grateful to Neurotalk for being here. It is my life line to sanity. My only connection to people who have any idea what a second of any given day for me can be like. The people around me at home, etc try to be sensitive but they just don't quite get it. Either they don't even come close or they back off completely.

Bottom line. Thank you all for being here. You are more important than you may realize. Thank you!!

Mark :)

Welcome to NeuroTalk, Mark. Nice to meet you.

Sheesh, your Mamma was right, but did she say there would be months and years like this.:D When the Lord was passes out diseases, you said, "I'll have one each in assorted colors" Huh?:eek:

Is your Neuro treating you to any of our lovely RSD, MS, PN, Pain and whatever Meds. Pain Meds being the most important, of course. Nerve pain is a whole other ballgame. Narcotics usually don't touch it, but there are some good meds out there, for nerve pain, that are pretty helpful.

I am one of the lucky ones, without too much pain,, but I had Shingles of the face one time, so I KNOW what nerve pain is like. I'd rather have ten babies right in a row.:eek:

Some Peeps will be along soon, I hope, and give you some help on the pain meds. We are here to support you.

Thank you for the nice intro.:) Hope to hear from you soon.

Hi there!

I am kind of a transplant from another board that seems to not be working at the moment. I see some familiar faces though :)

I live in Colorado and have had Fibromyalgia since 2001. I started having some odd symptoms over this past summer (numbness, tingling, sunburned feeling...) and I just had my 1st MRI last month.

I have 2 boys ages 6 and 17 months. I also have a hubby, we have been married for 7 years.

Nice to meet everyone!

Hello Sibyle and Welcome!

I'm glad you decided to join us!

Welcome Sibyle, thanks for joining us. Pull up a chair and get comfortable.:)

Sounds like you have a lovely Family,

What other board did you frequent?

Welcome to the forum, Sibyle. Nice to have you aboard. :)

Cherie

Hi Everyone,

Just lurking around trying to find out some information on Post Polio. Hubby & I believe this is what he has. We are going for tests Tues.

Any one have a test called "Electromyography (EMG)"? I would like to know what to expect. I have read information. Nothing like getting it from the horses mouth though. Hurt? How long did it take? I sure hope I can stay with him during this test.

I know this is M.S., I was hoping someone could help me out here. Being that both are with nerves.

Kitt

Hi there -- I am a Newbie
 

Hi -- I am new here -- this site was recommended to me by lady_express_44. I had been on a different site with her but am finding less and less to discuss there -- they evidentally have a problem with LDN...my drug of choice.

I have read some posts and you all seem positive, supportive and friendly.

I was dx in 2004 when I had a bout of ON --but they think I may have had MS for over 25 years...just have had long periods of remission. i am taking LDN -- Was on Copaxone but had problems with it. Glad to be off it. My symptoms are mild at this time. Residual issues with the ON--Florsents and hot weather bother me some--but its getting better all the time.

I Just started seeing a new Neuro -(got away from Kaiser-thank you God)- he is a MS specialist, seems great and has no problem with the LDN but he wants me to think about taking 4-Aminopyridine along with it. Has anyone heard of this? I googled it and still have reservations...in a higher dose it is a poision?

Well -- I am glad Lady Express recommended this board -- at least I can discuss the LDN openly and possibly get some answers. Hope I can help you all too from time to time. :) Gail :D

Hello Kitt and Welcome to the MS forum - sorry I don't have any answers for you but maybe someone else might.

Gail ~ Welcome! I have this feeling I know you from another board - hope you find this board more to your liking.

Hi Gail, nice to meet you.:)

Yes, LDN used to be a dirty word on most forums, because it was new, it was cheap and was not Big Pharma approved.:rolleyes:

I'm surprised you are still having problems talking about it, though, since a lot of the naysayers are now on it..LOL.

We are free to talk about all our Med choices here, and debate them as well, so don't be shocked if someone does not agree that LDN is a good thing.

I am glad Cherie steered you in our direction.:D

Hugs,

Thanks Sally and Lee Ann -- Glad to be here.

I don't mind controversy == I like a good debate. And as far as meds go--its whatever works for you.

Have a good evening :) Gail

I joined awhile ago but never posted. I was on another message board for years which has been down for quite some time.

I was diagnosed 16 years ago and did pretty good until three years ago when my arms got very weak, followed by my legs last year. Now, I use a rollator or a wheelchair to get around because of weakness and because of falls. I was on Copaxone, then switched to Betaseron in September.

So, I just wanted to say Hello to everyone. :)

Hello Ann!

I'm glad you decided to post and let us know your here - the more the merrier;).

Have you noticed any difference with Beta?

Welcome Ann, Nice to meet you..:) I know a few people on Beta, and doing very well. I hope you do as well. Why the switch?

I'm so glad that you decided to join the group.

Thank you LeeAnn and Sally. I haven't noticed any difference yet since starting on Beta. I switched because I was slowly getting worse on the Copaxone, and we decided to go with an interferon plus a 3-day IV Solu-Medrol infusion. I have hopes that between the two of them, my MS will stop getting worse.

Hello.
I am an MS'r of 5 years. And what a 5 years it's been!
The first year was the worst. The second year I did the Novantrone. Great stuff, but hard on the heart.
I advanced real quick into SPMS. My doctor said to me, boy oh boy, you don't waste time, you just jump right in, huh? No tow-dipping first?
I have a pretty good attitude about it all. It is what it is. God has the plan. And besides, what or whom would I fight? God, I think not. It's all about acceptance I believe.
My trip with MS has not been an easy one. I had vertigo for 5 months along with quad-vision. My left eye crossed in. Man what a sight that was. No pun intended. I have wet myself.....in the mall.....with my girlfriend.....we laugh and I wet more. Note to self--always have a sweater to tie around your waist. I have had the numbing everywhere. The trouble walking. Holding my coffee in the morning. What a site that is. Double fisted to sip my java. One of my friends thought it appropriate to give me a bib. How thoughful she was.
I make fun of myself and this disease all the time.
Never mind the checkbook. Can't do it. Yet another job I get out of. hehe No, really, my husband got tired of fixing all the overdrafts. Did you know you need to subtract the withdrawls and add the deposits. whoops No harm no foul, right?
I haven't always been this way. Only since I was picked to have MS.
I used to think I had it all. That I could do anything. That I was smart, and pretty and well liked. I worked hard at my job as a mom, wife and an employee. I had money, savings, retirement, new car, home, furniture. I was on top of the world, so I thought.
Then one day it all changed. And I changed with it. You know. I like where I am today and who I am.
Odd, no more new car, house needs some fixing, no more retirement or savings. Used it all up waiting on the social security. But you know. I have more now than I ever did.
I have trouble remembering things, and tend to make them up as I go. Just kidding (for the most part). Who ever said ad-libing was bad. It adds more spice and depth to the story. And we all like a good story. Right?
When plans are to be made, everyone seems to do it through my husband. I think it's funny. Yet another thing for me not to have to worry about.
I would love to talk with someone to share the trials and tribulations of this here MS thing that they keep telling me I have.
Talk to you soon,
Sheila

Hello and How Do You Do?
I am a new observer and find this community and the information here to be top drawer. Thanks so much for sharing. Well, I don't know if I have MS or not. I've seen a neurologist exactly once. I have some symtpoms that sure point in that direction and I have some nonspecific lesions on MRI - but doc thinks not MS. At least not so long as my symtpoms improve.
I am an experienced member of the back problems forum on the Healthboards. Through my 2 big back surgeries I relied on those good people for support, information, and advice. What a help they have been to me.
I am a scientist and I find knowing and researching calms my fears better than anything else. I would be happy to accept my docs opinion and move on except I still have symtpoms and I think going undiagnosed might entail risks.
I have a great friend and helpmate in my husband, Chris. I spend hours everyday walking with my 2 rescue dogs and the homeless dogs living at my neighbor's kennel. I love to swim and do crafts. I have been in PT for years and do my PT stretches faithfully even though I don't seem to get any better from them - at least I tell myself I'd be much worse off without them.
Pleased to meet you - suzyq

New to MS and boards
 

Hi All! My name is Courtney. I was diagnosed with MS early July of 2006 but suspect I have had the disease for about ten years. Would love to know if anyone has had success or experiences with Neurovax or LDN. I am currently on Avonex and having a hard time with the side effects. Will be looking at Tysabri at the one year mark if I don't show signifigant improvement. Thanks in advance for your input.

Also...
 

I am not sure how often I will visit this site. I did start a blog and you are welcome to post comments there as well. Best, Courtney

www.reversems.blogspot.com

I am a new member. I was diagnosed with MS 6 or 7 years ago, and I was un-diagnosed 3 or 4 years ago. Dr Dennis Bourdette of the Oregon Health and Science University's MS Clinic looked at my brother's and my MRIs and declare that our respective damages were too symmetrical and too diffuse to be caused by MS. Instead we were diagnosed with an adult onset leukodystrophy (unknown type). This is cause by a genetic condition and was confirmed by the Mayo Clinic when they diagnosed by older sister with the same problem.
To shorted a long story, I am here under false pretenses, but my disease is a myelin disease and my symptoms include (I think) all of the common MS symptoms. I remember well going to a MS support group. Within several months, I had experienced all of my symptoms and kept adding new symptoms for each meeting. After getting some awfully funny looks from the group, I quit narrating my symptoms, and just listened (which I find very hard to do.)
In my heart I still have fond connections to people with MS. It's as if I am a distant, but poor relative of yours. And since adult leukodystrophies are quite rare, I have no other group to belong to, so I plead your indulgence to join in with you guys.
As a side note, the reason I got all my symptoms within a short time. My genetic leuko defect affects my metabolic system which, in turn, causes thinning of my brain's myelin, and once the thinness reaches a threshold level, all the symptoms start, so I didn't have to wait for new damage to appear like you guys do, but got to experience everything at the same time. And as for rarity, my family is at present the only leukos who share the same metabolic problems. So I am one of four. But we willingly accept new members, I promise.
Thanks guys.

Hi all,

Have just found your forums so thought I would sign up and introduce myself.

I am the webmaster and discussion board admin for the Multiple Sclerosis Resource Centre in the UK.(http://www.msrc.co.uk)

I have been diagnosed and then undiagnosed with MS over the past 4 years and am now on my third Neurologist who is starting the process all over again, so having fun

So hi to all, and nice to meet you.

squiffs
:)

Hello
 

Hey, Thank you for the welcoming. Im new here been diagnosed since my birthday, June 2004.

Hi there Mademoiselle! Sorry you have to be here, but as long as you've joined the "MS Club", this is a good place to be for information and support. What a birthday present! NOT!! Hope you're doing well and hope to get to know you better. Welcome!

Hello,

I am a spouse to a newly diagnosed MS patient. Anything I should know?

New to this site
 

Hi!
I was diagnosed in 2003 with RRMS. First I was on Avonex but was switched to Beta Seron last summer. Had a Baclofen pump put in about 3 months ago, the best thing I could have done for the spasms. I am now able to walk without a cane!

Just checking this site out, read about it recently on some other sites and the info was very positive.

Hi Tinkerbell and welcome. God bless you for being a carepartner with your ms spouse. This is a good place for information and support. Hope to see you around!

Hi Nana! Welcome to Neuro Talk. This is a friendly place for good information and support. How are you doing? And are you really a "Nana"? I have six grandkids, the bright spot of my life!
Come on back!

My name is Jessica, I'm 29 years old and live in central PA, just outside of State College......home of the PennState Nittanty Lions and of course JoePa! I was dx October of 2003, I remember quite well, the very next day my fiance got the call that he and his National Guard group would be leaving for Iraq in a month! Thankfully though it is now Novemeber 2006 and he is home safe with me in PA with our 80 pound dog and 8 pound cat! PhireX recommended me to sign up here.

Picture it, college apartment in central PA, 1999 (a.k.a Sophia Petrillo, Golden Girls)! My first symptoms began showing. I noticed I would shave my legs but couldn't quite feel the razor on my skin, it would come and go. In the spring in my lit. class I noticed my left eye just would not focus, and was very shifty. I went to the eye doctor, he said my vision was near perfect. These symptoms continued on sporadically, I sort of acclimated to them I guess.

I graduated College in 2000 and began working full time in a local car dealership that I was employed by part-time through college. I had health insurance.....yay!! Of course when I had it I really didn't notice any reason to go to a doctor. 2001- Boss got into some trouble. Hours were cut, then a complete layoff, no more Health Ins.

2001- Idiots in the apartment above me left cigarette burning, apt. caught fire, we lived in an old victorian house. My things suffered smoke and water damage...plus I was wedding planning, so many things I had purchased were ruined.....this was Nov.

2002-February, so not too long after all that my grandma passed away, we were extremely close, I also was planning for a fall wedding....starting all over again.....

I became very anxious and depressed, I became agoraphobic because every time I left the house I would lose bowel control. My balance became so bad I could barely walk, I couldn't stand in the shower...my eyes were horrible (now I know it was a combo of vertigo and ON of course) With everything going on and a wedding in a month friends and family were sure it was stress that got out of control.

Luckily I found a wonderful doctor who helped me get state assisted ins. because she suspected MS. My wedding was in a week, we had to cancel, I never would have been able to walk down the aisle.

When my MRI came back it was an obvious diagnosis: 60% of my brainstem was covered in a lesion. and about 5 quarter sized ones scattered and very lit up, and a ton of tiny faint ones.

Though MS is such a tough diagnosis, after all I had been through the dx came as a relief! I started steroids and Rebif right away. I use a quad-cane, (I'm bringing sexy back!) , have to ear adult diapers sometimes, and cannot feel the bottoms of my feet.

I am on SSDI, and I do some Notary Public and Full Agent work (licensing/registrations) out of my little home office.

My OH (other half) and I never did get married because I can't afford to lose my Medicare, and he needs to finish his schooling. He had to give up grad school twice, first time for Iraq, 2nd time I had an awful relapse, couldn't even feed myself, so he stayed home to work and care for me. He is so good to me! Now he is going into nursing, it is the best fit for us and he is excited about it!

Yes, I am doing bettter....Rebif seems to have stabilized the MS so far. When I was first diagnosed I was pumped with so many steroids I was afraid I'd look like a Wookie by now!

OH and I met in college......we had classic lit. together. Also we both worked part time at K-fart. I recognized him the first day of class so I went over and grabbed the seat next to him introduced myself and kept talking..(I'm a pretty good talker which you may have noticed)! We've been together ever since!

I enjoy writing, downloading music to make compilation cds and chat online with my college girlfriends!

Hi! Daisymay here... I have been on another board and this site was suggested to me. I suffer from Fibromyalgia, Polymyalgia and just recently Dermatographism, which is an allergic skin reaction. I also have a wait and see MS DX.

Hoping to get to know you all. This place seems like a really great place to come to for support and info. :) :)

I do see some "familiar" names from the other board, so don't feel quite so alone..... So, HI ALL!

Hi all, I'm 44 and I've been MSing for about 25 years now. The last few years have made life a lot harder but I'm still plugging along.

I love to communicate and meet new people, so I'm hoping to become part of your community.:)

Welcome to Neurotalk Jessie, Daisy and AMN..:) :) :)

So nice to meet you all. I recognize Daisy and AMN from another forum. So nice of you to join us here. We are not as fast paced as MSW or BT, but we try to keep up.:D

Jessie, so sorry for your ratty DX, but you are among Friends who know what you are going through, here. I hope we can be a source of support for you and maybe a little fun too.:)

Looking forward to getting to know you all better.

:grouphug:

Well all be darn!!!

Hello JessieSue, Daisymay, and AMN and a very big :welcome_sign: to NeuroTalk.