WELCOME EVERYONE TO THE MS FORUM!

[Quixotic1]

WELCOME TO THE MS FORUM!

You'll find that this place is great place to land if the diagnosis of MS has brushed your life.  We are large, but very intimate and supportive, group of people that span the entire spectrum from people who have had MS for a while, to the newly diagnosed, to people who are approaching a probable diagnosis, to those with symptoms who are concerned that they might have MS.  We also have people who started out thinking they might have MS but were diagnosed with an one of the MS "Mimics."  They have stayed around for the friendship and to share what they have learned.

There are a lot of ways to use this forum.

One of them is to go the the "Health Pages," (which are not the "tips on being healthy" that they sound like). You'll see the link to the Health Pages in the upper right hand corner.  These contain some of our favorite pieces of information on many different aspects of MS.  You find many of your technical and medical questions answered in thoses Pages.

We invite you to just join in.  If you've never communicated on a forum before, it may feel awkward.  You'll be more comfortable the first day!  There are no topics that are too weird, "silly," or delicate to be asked here.

We have areas to write a journal, which can be private, public, or available only to those people you have added as friends.  You can communicate privately with anyone on MedHelp through your "Inbox."  You can also send a quick public "note" to anyone by hovering over their name.

You can lurk here without posting, and we are a great "read."

Please go to "My Profile" if you have created one.  This is in on the top line of all the pages and is indicated by a red heart.  You will see see the different things, like photos, journal notes, and messages, that are available to you.

On the first page of your journal, I invite you to write up your "story" - whether it be of your experiences with MS or of diagnosis, or your frustrations of not having a diagnosis. Write about whatever it is that brings you to a place of support, friendship and information.  By being on the first page of your journal you will give us a place to go and learn about you as we respond to your posts and questions.

But, mostly, join us and be a member of our community.  You'll never regret it!

The following posts are from members of our forum that wanted to add their voices in welcome.  I hope you read them.

Quixotic1 (Quix)

[jensequitur]

Welcome to the forum!  

If you're here, you either have been diagnosed with MS, or think you might have MS.  First of all, my sympathies go out to you, as neurological symptoms are the scariest ones to experience.  Let me reassure you that having MS is not the end of the world.  Speaking from personal experience, MS has been a real inconvenience to me, but my life hasn't ended.  Feel free to look around and find out more about multiple sclerosis, and ask questions whenever you encounter something you're not sure about.

[mokibear]

I too welcome you to the forum. You have found a place full of wise, compassionate and fun people.

I am a limbo lander and after searching for answers found myself here. The response to my first post was so overwhelming with the care and concern of the other forum members that I immediately felt like I had entered some amazing cyber family.

My life consists of many questions, frustrations, sadness and joy, all of which I have been able to share on this forum. The support I have received is amazing with member chiming in when they have something to share or answers or even just a shoulder to lean on. The information I have received from these incredible people is much more than if I were just to sit and google or at times more than I have received from my doctor.

Join us, you too will find out how amazing these people on here truly are. You will find that you are never alone.

Moki

[doni54]

I don't post much, but have been a forum member since July 07 and don't know where I would be now if I hadn't found this beautiful place and these wonderful people.

I am undx and just take things one day at a time.

I would also like to welcome all of you to this forum.  You will find this is the most wonderful place to be when you need answers or if you just need a shoulder to lean on.

The people here are the best you will ever know.  There is much love, support and compassion to be had here.  

Our resident momma bear is Quix, and she is wise and wonderful.

I agree with Moki, you will never be alone cause we are all here to help if we can.

doni

[Rena705]

Hello and Welcome to the best Website available if you are dealing with MS in any way, shape or form!  

My name is Rena and I have been here since Fall 2007.  My story is a little different than most in that I was originally diagnosed with MS in 1993 and then again in 2007 and yet my neurologist says that because my disease is "inactive" I am being denied the Disease Modifying Drugs.

This is a very frustrating position to be in because if you don't believe what your neurologist is telling you...where do you go next?

This Forum has been a wonderful place for me over the last several months in that if I needed information to back me up when I saw my doctor, Quix (our den mother) was always able to find the information that I required and readily supplied it to me.  This also empowered me to pass on any information that I may have from my experiences on my journey and I have been able to pass them on to others in need.

It is amazing how we have all been through down's and up's and someone is always there to help with the "downs"...I have done my share of ranting and raving and someone always seems to be able to help me through it.  It is also very fulfilling in that if someone else is trying to deal with some "down time", I have been told that while I am firm in my beliefs, sometimes tough love seems to work because these people have come out of their "bad times" and moved on to better things in life.

I would suggest this website to anyone who is dealing with MS in ANY way, shape or form!

Oh Yeah...we have a lot of laughs between us all as well and they do say that laughter is the best medicine!

Rena (the resident fly fisherwoman)

[Barbie51]

Hi, you're going to like it here. I've had MS since 1996 and was diagnosed in 2002.  I've never had any "visible symptoms," but still, have changed my life considerably.  The fatigue and cognitive problems forced me into retirement.  That has certainly not been all bad.  I've learned to enjoy what I can do and realize there are still many blessings to be enjoyed.  This forum has taught me so much about the MS monster.  Much has been clarified for me, for which I'm grateful.  I've learned what to look for and what to ask about when I see my neurologist.  Mostly, I've learned that no matter how bad things get for some, there's always many on this forum ready to give advice, encouragement and a shoulder to cry on.  There's always someone who understands exactly what you're talking about, no matter how crazy it may seem to you.  Take some time to get familiar with this forum.  I think you'll appreciate all it has to offer.

Barb

[sllowe]

WELCOME!

So glad you've joined us!  Whether you are visiting, or plan on staying awhile, you will find support, comfort, and endless knowledge & experience here with us.

I'm "SL" and I have MS.  It had to be beaten into my thick head, but yes, I "SL" have MS.  I still have so very much to learn myself, but am more than happy to share my experiences with you if you like.

You'll find that we all have questions we think are silly, one's that are technical, some are vent/ranting sessions, and sometimes we shed a tear, so pop in anytime you like, and if we can help, we will.

We also have subject matter experts and professionals in "many" areas! It's amazing!

So, stick around if you like, and WELCOME!

be well,
-SL

[Momzilla]

I would also like to welcome you to our little corner of cyberspace, our haven.  I think this forum has started from the beginning, and keeps evolving into a great source of support and information for those who truly need it.  If you're reading this, it's most likely because you need some answers and probably someone to hold your hand.  That's what we do best!  Welcome!

I'm Momzilla*, or Zilla*, or Twinkle Toes*, or many other things I have been called here.  I have neurologic signs and symptoms, but no real diagnosis, as all my testing so far has been pretty normal.  I'm in Limboland, as we say.  It can be a very frustrating place to flounder around.  But we try to keep everyone's spirits up as we navigate toward some kind of diagnosis.  And, information that's given here can help you ask your doctor the right questions, ask for the proper testing, the proper care.  We try to help each other keep on living our lives, even though the "undiagnosis" seems to hang overhead like the Sword of Damocles.  

Please feel welcome, as everyone has said to ask ANYTHING.  The only stupid question is the one not asked.  Right?  We laugh a lot around here.  But not at questions asked.  Not at topics you're afraid will offend.  Not at issues you think are too personal.  But, when the moment is right, we laugh our numb or tingling butts off.

So, please join us, if you'd like.  We would LOVE to get to know you, and have you be a part of this wonderful community.

Feel well,

Momzilla*

[Heather3418]

If you have found your way to the MS Forum, WELCOME.  You will soon learn that this forum is filled with "Angels with Invisible Wings."  There isn't one single person on this Forum that would not go out of there way to help you in any way that they can.

Our members keep up with your appointments and will continually check in with you to see how things are going.  This truly is one of the greatest Forum's on the Internet, if not THE greatest.  You will soon see why I say that.

If you have any questions about they way the Forum works, please feel free to ask. You'll learn alot by going to the top right of the page and clicking on "Health Pages."  It contains volumes of valuable information about MS.

We hope that you will not only post your story, but share your knowledge with others.  We are all about helping each other.  

It won't take but a day on this Forum for you to feel the caring and compassion of these wonderful people.  They are saints.  

Again, we are so glad you joined us.  It's a decision you'll be glad you made.

Big Hugs to all of our newcomers and of course to our "veteran" Forum members,
Heather

[Cosmobirdy]

Hi there and Welcome!

You have just found what is probably the best forum out there!  I am relatively new here, and the warmth and caring and knowledge I received from this group from the very first day has been amazing.    

If you are new here, you probably have alot of questions and concerns... you never have to be afraid of anyone's reaction here.  Like Zilla said, we laugh alot, but never at anyone's expense.  No matter what your symptoms or experience, there is usually someone here who has been there.  The variety is what makes this group so great!

If it had not been for these wonderful, caring people, I don't know what I would have done when I was in LimboLand, lost and confused and scared.  Like Heather said - each and every person here would not hesitate to help someone else however they could.  

Please join in and take advantage of all we have to offer you here...  you're not alone anymore!  And once you're part of the group, you're not allowed to leave, even if you get diagnosed with something else - everyone will still care, no matter what.  This group comes with no strings attached... just the joy of supporting each other however we can.

I hope you feel welcome and want to stay with us... :)

Rita

[young at heart]

WELCOME TO OUR CYBER WORLD, TO A FAMILY THAT CAN GIVE ADVICE,LEND

A SHOULDER TO CRY ON AND TO HAVE MANY LAUGHS .OH, I CAN'T

FORGET OUR FRIDAY NIGHT VIRTUAL WEENIE ( DEFECTIVE NEURO'S) ROAST.

I AM T-LYNN, I WAS DIAGNOSED WITH MS IN 1998 AND IGNORED IT,I TRUELLY

BELEIVED MY NEUROSURGEON WAS COVERING HIS HINEY AFTER A FAILED

BACK SURGERY.

REDIAGNOSED JANUARY 2007. I HAVE THE UNUSUAL MS DIAGNOSIS,MRI'S SHOW NO LESIONS,BUT BRAIN ATROPHY,LESIONS THAT HAD BEEN THERE,BUT FORMED TOGETHER AND CREATED MY BRAIN TO SHRINK.

MY LP ONLY SHOWS HIGH IGG SYNTHESIS AND HIGH MYELIN BASIC PROTEIN AND MY EVOKED POTENTALS ARE ABNORMAL.

I DO NOT HAVE THE CONVENTIONAL DIAGNOSIS.

I REMEMBER WHEN THERE WAS ONLY A HANDFUL OF MEMBERS HERE WHEN THIS FORUM STARTED.

I AM OVERWHELMED HOW THIS FORUM HAS FORMED AND THE WONDERFUL SUPPORT THAT EVERYONE HAS GIVEN EACH OTHER.

WE ARE A GLOBAL FAMILY,SOME WITH MS,SOME WITH PROBABLE,SOME UNDIAGNOSED,SOME WITH THE MIMICERS THAT HAVE STAYED HERE WITH US.

I HOPE ONCE YOU HAVE LURKED,READ, THAT YOU JOIN US.

THESE BOARDS HAVE BEEN A GOD SENT FOR ME,THEY HAVE HELPED ME THROUGH MANY ROUGH TIMES HERE LATELY,I AM BLESSED TO HAVE THIS CYBER FAMILY.

THE SUPPORT AND THE WEALTH OF INFORMATION IS AWESOME.

NEVER GIVE UP ON FINDING A DIAGNOSIS,THE ANSWERS ARE OUT THERE,IT'S FINDING THE RIGHT DR. WE ARE HERE TO HELP GUIDE YOU.

WELCOME TO ALL !!!!  YOU'LL NEVER BE ALONE

T-LYNN

DX'D WITH MS AND CHRONIC ADHESIVE ARACHNOIDITIS

[Super_sally888]

Hi Everyone,

Welcome to a warm little corner in cyberspace.  Isn't it wonderful how we can touch and be so supportive of others from the isolation of our computer keyboard.

This is a great place to find info, to vent, to share, and to celebrate.  Mostly we talk MS stuff here, but not always.

There are also many people here without diagnoses.  The , maybe, possible, probable, or mimics of MS, and those touched in some way directly or indirectly (through family member or friend).

MS is such a frustrating condition.  It is also very difficult to diagnose.  Diagnosis may  take many years, or that diagnosis may never come.

From my internet searching it appears that many people have symptoms that could be MS.  Mostly these are mild symptoms, and in reality could be explained by many possible causes.

Whatever has brought you here, I think the key thing is to keep living your life and doing what you need to do to have as much quality as possible whether you have any condition or not!

I am not diagnosed with MS.  Though I did have that possible diagnosis thrown at me about a year ago - when I ended up in hospital with severe fatigue and heaps of symptoms.  They gave up on that possible diagnosis when all the tests came back inconclusive.

I am diagnosed with hypothryoid, pituitary adenoma (now have very high prolactin levels), PCOS, prediabetes, celiac, asthma, allergies and latest is occular migraines.  

I still have unexplained sensory (mainly burning, tingling, altered sensations), balance issues, visual symptoms, and fatigue. I do have MRI findings and changes, but (other than the pituitary adenoma) not specific enough to give a diagnosis, and I haven't had a lumbar puncture.  I may or may not have MS (time will tell), but I do have some major endocrine issues.

However, from the above it might sound that I am disabled.  I am not.  I am manager of a small environmental company, I am physically quite active (I was joining triathlons before all this happened, and am now training to join them again), I am part of a group who organise triathlon and sporting events, and have a busy, active and pretty satisfying life.

Welcome all.

Sally

[shoshin]

I'll echo everyone's welcome to the MS forum. This forum has been helpful to me in many ways. Of course, there is a wealth of knowledge from Quix's excellent explanations of all sort of medical issues (intelligible even to a medical ignoramus like me) and the sum of all the members' experiences, information, and insights. It has been very illuminating to learn about the variety of ways that MS and its mimics manifest--I found this forum an excellent counterbalance to many basic MS resources which, in their effort to simplify things, don't address all the odd things that really happen. It has also been very reassuring for me to hear from others who have had the same sort of experiences and understand things in a way that my family and friends sometimes don't. And of course, there is a tremendous outpouring of warmth and support from many corners of the globe gathered here.

I hope you also will find some answers and comfort here.

sho

[Siddy1]

Me too!  I extend a hearty welcome to everyone.  I am one of the older (if not oldest) members here.  I have Secondary Progressive Multiple Sclerosis (SPMS)  which was diagnosed three years ago.  

Even though they say I have had MS for 40+ years, I am still here to tell the tale so take heart and dive in here and enjoy the friendship and support of our fellow members - you will also benefit from the very sound advice and expertise that some of them are able to give.



Marcie
Member since June 07

[grannyhotwheels]

A great big wonderful welcome to all.  If you are here it's because somehow MS has crossed your path or MS may be trying to cross your path.  I always try to remember one thing and that is:  YOU HAVE MS, MS DOESN'T HAVE YOU!  It will not kill you so just because you are diagnosed with MS doesn't mean a death sentence.

This forum is the most wonderful place in the world for trying to gain knowledge of MS or just needing a friend who understands.  Some of the best friends I have is right here.  If I need a friend, need to vent, need a new doctor, need advice, or anything else I can't think of right now, this is the place to be.

I just want to extend a big welcome and a friend if you need one to everyone out there.

I'll be praying,
Carol  (Grannyhotwheels)

[michael1028]

    You have found a great place for Support. I am one of the lots of symptoms but no dx just yet. I am a newer member of the group. I have just recently experienced what a great group of folks I have found at this group. They are supportive, thoughtful, and kind. if you have a spouse, they will like this group as well. My wife is happy I have found those who can relate and understand my frustration.I have about wore her ear out. It makes me feel better as well.
Good luck to you. Drop me a note and say hello. Very shortly you will understand how great the people in this group are. If you have been unfortunate to have a brush with MS in some form or way, You are very fortunate to be here.

Prayers and God Bless,
Mike  

[spastic]

Hello and Welcome to our Forum Family.  I'm Ada aka Spastic and I have been here since February.  This forum welcomed me with open arms when I was scared and feeling very alone in the world.  And I extend the invitation to you.  You will never be alone, being a member of our Family.  I don't have MS, but have a lot friends here who do, who I love and care about deeply.  

My forum family gave me the strength and the courage to stick up for myself with Dr's, to keep on seeking answers when theirs didn't make any sense to me.  I finally was dx'd with Still's disease which is a rare arthritis.  We are family here.  

Again, Welcome to our Family.

Many, Many, Cyber Hugs,

Ada

[ohwild]

WELCOME  to the forum I've only been here a few weeks myself, If you are in limboland like me and some others you will find great support here, and hopefully many questions can be answered, so come on in and take a look around,pull up a comfy chair and make yourself at home :)
CJ

[speechgeek]

Welcome to this forum..you have come to wonderful place!! I joined in fall 2007. I'm one of those people that was dx with an MS mimic... Lyme disease. The docs were thinking MS or ALS. I had a very sudden onset with a lot of vertigo, blurred vision, balance issues, muscle fatigue and was unable to walk or stand for more than seconds at the peak of symptoms.

This forum gave me strength from the first post and I was truly pulled out of a dark and sad place. I wake up in the morning and greet my family and then I log into see what the cyber family has going on. I continue to hang around in that my symptoms were very MS like. I hope that my story can help just one person get the correct dx and treatment .

I hope that you will stay for awhile and find the same comfort, support and love that I have experienced.

Rebeccah

[Wobbly]

Welcome to this forum... I do not post much here or anywhere really.  But I do peek in here everyday to see how all my forum friends are.  I get alot of answer sometimes before I have to ask a question and I feel all the love and help that comes from this forum.  

I don't know what I would have done for the past year or so without everyone here to talk with and ask questions.  They are the best...

andie

[Tahiri_Veila]

I am new here, but I too welcome everyone.  These guys are great and will answer any question you have.  They are great support and very kind.  I don't know what brought you here but you are in good hands.
Tahiri

[essdipity]

I have been away, and now this thread has gotten so long, with wonderful welcomes. If any newbie is still reading at this point, here's mine, and a little of my story.

Like virtually everyone here, I had mystery symptoms that were attributed to everything but a real disease, and I've been extremely frustrated with the medical system. My symptoms, like those of lots of us, would ultimately go away, at which point I'd think thank goodness whatever that was is gone, and the whole thing dropped off my radar screen. Only to return, several times, with variations on the MS theme, and I'd be back on the neurology merry-go-round. I realize in hindsight that this all goes back to 2000, so I've had a very long haul indeed. Some horrible dismissive doctors, the whole nine yards.

Anyway, I started doing what pretty much everyone here has done, and that is, using the wonderful resource called the internet to see what I could learn. There are 10 zillion MS references, or at least symptoms that could be MS, that turn up via Google. Lots of them are downright bogus. Weird 'natural' cures, things to sell, people's well-meaning but ignorant blogs, and lots of stuff liberally cut and pasted from one web site to another. Of course, good sites too, such as the Nat'l MS Society's, and quite a few others, including many from other English-speaking countries.

But so many Google hits pointed to questions and answers in something called MedHelp, and its MS forum. For a good while I resisted looking at these. I'd clicked on other forums and found mostly whining or chitchat, but not the solid information I really needed at that point. Ultimately the MedHelp bait was too attractive to pass up, and am I glad! This was by far the best thing I could do for myself. Specific answers to specific questions. Statements backed up by facts, and often by citations. Nothing generic at all. Wow, I had hit pay dirt at last.

Initially I learned much more about MRIs, MS mimics, tests, timelines, how to deal with neurologists, including the maddening kind, which are plentiful, sad to say. I learned that I was wasting my time with a neuro who didn't even read his own MRIs. I learned that there are better magnets out there. I learned I needed an MS specialist. And dozens and dozens of other useful facts that helped me so much to put the big picture together. I'm so very grateful for the information I've gotten here, especially, of course, from Quix. She has worked so tirelessly to help those of us subjected to the same awful runaround she too endured, and to keep newbies from such deplorable treatment if at all possible. So yet again, Quix, thank you!

Once I started reading the forum regularly, I got hooked from another angle. The members were so incredibly kind! They always could be counted on for help, support, friendship, and an arm around the shoulders. I've been bucked up so many times here when I needed it badly. I've made so many new friends, and these are people who truly understand. Actually understand!!  Hardly anyone else does, even our own families. It's incredible what people here have endured from their personal relationships, so I was not some kind of freak. I'd found a home.

Although I've been writing a lot today, I'm having a bad spell and am not capable of a lot else just now. Like many others here, I have to pace myself. But that's okay. We have so many great members who always are there for the others, and to pick up any slack that comes along. That is so comforting.

So newcomers, that's why I joined this forum. I know you will find it as great a place as I do.

A warm welcome,
ess

[yorkieville]

I would also like to welcome each and every one, sometimes I am too ill to post for long periods of time, so I know there are so many people I have not met....but believe me, you won't find any place on the web like this place.

This is a family, full of people that understand, without explanation, that love, unconditionally, and offer encouragement, advice, support, prayers....and education.

Once you come here, no one forgets you.....

I spent almost two years in bed....sometimes the pain and frustration had me in tears.

The day I stopped crying was the day I found our family, here.

I hope you will find some comfort here.

Hugs,
Sheila

[Fluffysmom]

Hello, and welcome!

This is a wonderful place to be.  I have had many health issues over the years, and spend a lot of time trying to figure out how to be as well as I can.

After I had a brain MRI show lesions that could be MS, I found this marvelous forum, and look forward to checking in with my family here.  There is always someone to listen, try to help find answers, share their experiences, give loving support, and often share laughter.

I find myself wanting to take a laptop when I go on a trip so I can check in and see how everyone is doing.  It really feels good when I am able to help someone else out, and of course feels great when people calm my fears, let me know I'm not alone, and that there are caring people that are willing to send me a cyber hug just when I need one.

This is the best forum I've ever seen, and I feel an almost Buddhist interconnectedness with this group of people around the world.  A very good place to be!

Once again, welcome!

Kathy

[santana8]

Welcome to the MS forum, my home away from home!   I have been a member since 2007, and I have found many new friends here who truly understand and are very supportive in so many ways.

My DX is ADEM, one of the MS mimics, but I have had repeat MRI's every six months to watch for possible MS.  This group has been so helpful and informative and a great source of strength for me!

~Santana~