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WELCOME EVERYONE TO THE MS FORUM!
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)
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)
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*
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*
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
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
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
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
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
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
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
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
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
I hope you also will find some answers and comfort here.
sho
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