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.
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.
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.
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!
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.
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!
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.
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,
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... :)
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.
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.
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.
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.
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.
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.
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 :)
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.
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...
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.
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.
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.
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!
A big warm welcome to my favorite forum and Cyber Family! I am sure you will find what I have in the people who visit here, a shoulder to cry on, an ear to listen and a ton of great advice on how to deal in a world of uncertainty.
I am presently a Limbolander but am hoping to graduate to having a real diagnosis some day soon. Again, nice to have you here!!
Welcome to the MS forum. I know that whether you're waiting for a diagnosis, have had MS for twenty years, or you're a caregiver needing support or info -- you've come to the right place.
There are so many people here that will do their very best to help you or just read and respond if you need to vent.
My personal experience is pretty varied and I like to share my experiences with the many treatments I've done during my nine years since diagnosis. Feel free to look at my profile and check out what MS drugs you might have a question about and PM me if you'd like. I'm pretty sure if it's out there - I've tried it! I certainly won't tell you what is right for you, but I can tell you what's worked for me and general information about my experiences.
There are also many kind, helpful, and patient people that will help you find the information you're looking for (I'm always asking) if you're having a hard time finding things yourself. There's a wealth of information on just about every symptom, treatment, and feeling that goes along with the process of living with MS.
Hi to all the newcomers, those who are lurking, and my wonderful friends here!
I've been reluctant to add my welcome until I had a diagnosis, and then I realized that I was a permanent part of this community no matter what, so I'd better put my welcome on here for everyone that's coming in!
If you are new on the forum, you've come to the right place... you will find support, laughter, smiles, patience, encouragement, true friendship, hope, answers, peace,and much more here. Hang out with us for a while.... check in every day, read the posts, invest in folks lives, get to know us, and we will in turn get to know you and be there for you when you are in need of a hand, a hug, and human being to laugh with, or to cry with.
As fare as me personally, I'm currently seeking treatment at NYU, and am going through the testing process and am in that end phase of limbo land. Things are moving fast... and we are hoping for answers, and yet I do not know what tomorrow may bring. I've had symptoms since I was about 17 or 18, and they have just went downhill this summer (when I was 20).
I'm here as a listening ear, a sunny smile, and a cheery heart for those who need it!
I was searching the 'net at "Oh-my-God-o-clock" in the mornin' last nite...(or this
mornin'...whatever)...for: "Cervical, Bulging Discs"...and ran across this website
in the top 3 entries of my search results...
I thought...How interesting...I have MS...I have bulging between C-5 to C-6 and
C-6 to C-7 vertebrae...THIS might be an interesting site...so...again...HELLO!!!
Yesterday I went for my Tysabri infusion #15...woo-hoo...went very well as usual...
after almost 2 years of the at-home-do-it-yourself Avonex injections my neurologist noticed
my progress had sort of reached a “plateau” I guess would be a good word…my condition was
NOT really progressively worsening…but it had sort of “stalled” and was not really making any
great strides in the area of improvement either…hhmmmmmm….what to do???
I asked him…OK…What is the next “BIG-GUN in the cabinet”…what we got?…what are my options?…I’m ready…lets kick the sucker’s a$$…at which point he said…I’m glad to see you
are so “pro-active”…
Let me back up for a sec…I was DX’d…I mean finally DX’d… in April 2006 by a GREAT MAN!
This was after MY MS presented in March 2006 for “no” apparent reason really…nothin’ dramatic happened…no car crash…no “incident”…just a 102* fever and my last 2 college finals I had to
pass to get my degree…ugh…
Oh…and yes…I passed…and received my degree…Magna *** Laude, with Honors…thank you very much...(applause here)….
From March to April of 2006 I really cannot remember anything at all.
In-and-out of the ER…I have medical records of the whole mess that show I think 4 or 5 LP’s,
countless MRI’s, blood work up the woo-hoo, you get the idea…
I was questioned and tested for everything from HIV/AIDS to Lyme disease, asked when and where
and for how long I had been out of the country…IT WAS MAKING EVERYONE NUTS!!!
Especially ALL the Doctors and Specialists…
Anyway…after finding a great neurologist and receiving the correct DX…we started on a VERY
aggressive treatment program that included 6 months of Chemotherapy, corticosteroids, and Avonex.
Thought after all the help I have had recently that I should add my welcome too as I like to think I am now 'officially' a member of this great community and even found the guts to update my profile and add a picture so I am here to stay for now!
What an amazing place - I am adddicted to checking out every day the discussions and the chats by others here and I've been made to feel so welcome from day one. If you find this place by chance, as I did, then you have found a home form home where people understand in a way that only those with a probable / possible / definite MS dx can do.
I may not add a lot to discussions as my job is quite demanding and has long hours and tiredness often dictates I go straight to bed when I get home - but all the same I am so glad to be here and happy to help others whenever I can.
i started here a couple of weeks ago and am finally getting to introduce myself. i hope you all forgive me. i came here looking for support and understanding with this horrible illness. was in another group and support was just on the title.
i guess i should start...i'm dee, 33 years old, married, with two wonderful boys 11 and 8. my youngest is mildly autistic with adhd and my oldest is a sports nut. which means loads of fun for me. i was dx on dec. 27, 2005, one week before my 30th birthday. merry christmas and happy birthday to me!!
i did the right thing for about a year in taking my shot and my occasional meds. then everything went into remission and i went into denial. two monthes ago i got a shot out of denial with a major relapse. so no more denial for me.
Once there was a reasonably happy person who lived among the good and happy times of a metropolis much akin to the Emerald City. Life was good and the residents were busy being oblivious to the dangers lurking, thanks to the smoke and mirrors of living in such an enchanted town.
One day a dark storm moved in and removed the shine off that happy world, leaving in its place tarnished harsh realities. Not wanting to be surrounded by the never ending reminders of the changes going on, the resident took off running.
Not so much a Forest Gump type of meandering run without a purpose, but rather like that fabled gingerbread child looking to escape bodily destruction. Run, run as fast as you can…. Oops there goes a leg. It’s still there but it certainly doesn’t work. Running is now out of the question.
Now gimping along, instead of running, the hopeful one asked everyone that was along the path for directions, but didn’t know to where . … “Where am I headed?” was repeated over and over. “How will I know when I don’t have further to go?” was another inquiry. Well intentioned acquaintances proposed solutions and hexes and balms and salves as answers. Strangers could only stare and then turn away, pretending to not notice. No one was able to provide answers; the less-than encouraged one moved on.
The journey continued down the path, which was littered with syringes, pill bottles and too many used alcohol wipes to count and the less-than -positive one kept moving along. Stops for rest were only possible when handed a card written with gibberish proclaiming a pause for another appointment- money due at each stop, paid for the privilege to move on to more unknowns.
Further along the path was a wall, which the shaken one slowly hoisted up on and proceeded to fall over the far side, thanks to a growing problem with vertigo. More damages accumulated to the weary body. Horsemen from the nearby kingdom passed by but only shook their heads, knowing full well they couldn’t put the broken pieces back together again. Shattered but still full of spirit, the damaged one pushed on.
Looking around proved to be a dilemma because the diminished one’s vision had deteriorated, and everything was blurry and seen in multiples. Blindly the frightened one veered off the beaten path and discovered that it dead ended into the deepest of forests, dark as night, and filled with more scary things than can be imagined. The fertile imagination takes over, and turns the scene into a nightmare, all the possible outcomes playing over and over until becoming almost concrete in form. The darkness of the imagination let loose to run amuck overshadows the real darkness of the forest.
Staggering now, just ahead is a sight that was difficult to comprehend. A spectacular refuge, clearly marked and sitting alone, is calling out like a siren for wayward sailors. Edging closer, it becomes clear that this place is meant to be a safe haven; the initials MH are carved into the gates protecting the abode. The encouraged one immediately thinks “My Home, this is now My Haven.”
Entering through the main door, the astonished one is immediately joined by others already assembled inside. And this is their greeting: Welcome - come share your thoughts, your fears, your wishes, your dreams. We all have them. Welcome to MedHelp.
Just wanted to pass on my sincere thanks for all the help and support you have given me. This is truly a special place filled with kind souls and intelligent people (not that they are mutally exclusive).
Everyone here "gets it' and knows how it feels to live in either Limboland or on the side of the diagnosed with MS. No matter which side you reside on, you will find compassionate caring people to help you through your journey.
Ditto to what Ren just posted. I'm sure I may have found somewhere else to turn when I started on this MS dx journey, but it probably wouldn't have been with a group of really caring, smart, and truly sincere fellow human beings whose only agenda was to help each other through all this. Thanks from me to you all as well. It is now our turn, the newbie MSers, to reach out and help other newbies that come along after us.
I would like to you with you. I do not even that society sick in the SM is so numerous, very aug ciesze that here for you I. yet I do not know what and how it works. I will teach aug friend. wybaczcie errors.
Chciałbym się z Wami przywitać . Nie myślałem nawet ,że społeczeństwo chorych na SM jest tak liczne,Bardzo sie ciesze ,że tu do Was trafiłem .jeszcze nie wiem co i jak działa .Uczę sie poznaje .wybaczcie błędy.
Hi! My name is Martha and I got diagnosed with MS in 2006, it has gone from MS, to probable MS, to "I dont know what is wrong with you". I was feeling fine for about 2 years, but this summer all my symptoms came back with a vengance and frustration is now setting in. I am hoping to find a new neuro so I can get some definite answers and seriously considering going back on Copaxone.
Hi, all. This is Heidi and I was recently diagnosed with MS, but it's suspected I've had it for a very long time.
All of my lesions are in the cervical spine only at C-4, 5, 6, and tiny ones at C-7. I have suffered in pain since reacting to Levaquin, a flouroquinolone antibiotic. I had L'hemittes sign since my early 20s, not knowing what it was. A physically stressful domestic event in 2004 set off spasms and pain in my trunk. After the levaquin event in 2007, every kind of tingling, burning, stabbing pain took over my right side. Symptoms contine worsening in 2009. Many doc visits and response to Gabapentin got me to a neurologists, where after months of tests and MRIs the MS-specialist neuro gave me a definite MS dx.
I will use this site to learn more about the condition. I have been given a 6 month reprieve on starting the modulators (although it was recommended I start ASAP), I swim 4-5x wk and am in great shape, but pain is a constant in my life. Thanks for all the insights here, esp on the MRI details. -h
I am a 31 year old woman and half of my tongue is numb....not completly but enough that is it anyoning.
I saw my primary and she did some office exams...llike touch your nose then my finger...I wasnt able to touch her finger correctly with my right hand.... when standing completly still with my eyes close....I began to slowly lean over to the right side and I did not notice it until I was off balance.u know stuff like that and on the right side of my body is different then the other.
I feel like I have a extra layer of skin on the right side so although my right side is not numb it is different. My MD said that she doesnt think its bells palsy (which I had about 5 1/2 years ago) So I am a worried. She did mention aneruisum and MS. I am very worried.... I would perfer bells pasly over anything else. My MD has order an ekg, blood work, MRI for my head, neck and brain and an echocardiogram. Anything else you would recommend??
Please respond with your medical thoughts on what you think.
Welcome to the site. I have been a member for a while, but never make it on. I'm trying to get information about MS for my husband, But love this site, cause we meet new friends and get some answers we need we can find answers. Hope to have more time to be on site.
I am an absolute believer that Lyme disease is a mimicker of MS. However, I am one who was tested for MS, but it turned out to be Lyme disease. Please know that the Lyme disease tests are currently under review because so many come up false negatives. I am CDC positive for Lyme but it took 1 1/2 years for that diagnosis to come. If you have tested for Lyme and come up negative, this does not mean you do not have Lyme. There are other ways of telling whether someone truly has MS or Lyme. One of those is that a Lyme patient will go through what is called a Herxheimer reaction when they take antibiotics that kill the Lyme bacteria. This means that when the spirochetal bacteria die from the antibiotics you actually get more severe joint pains and other symptoms because they believe the bacteria releases a toxin at that time. Keep this in mind next time you take penicillin, doxycycline or that line of antibiotics. If you get sick on those but aren't having your typical allergic reaction, you may be having a Herxheimer reaction which means Lyme, not MS.
Also on a SPECT scan of your brain, Lyme disease will show improvement after treatment with antibiotics. Ticks are also transmitting more than just Lyme disease now. They are transmitting other bacteria like Babesiosis, Ehrlichiosis, Bartonella, etc., so you may test negative for Lyme but you can still have one of these other infections that so many physicians are not testing for. Only a Lyme Literate Physician can properly diagnose and treat you for Lyme disease. ILADS.org is the best place to find information on Lyme disease.
Don't overlook Lyme disease. I think one day we are going to find out that many MS patients actually had Lyme disease. Alan MacDonald, a great pathologist who was studying Lyme disease found that 7 of 10 Alzheimer brains that he received from the Harvard brain bank had the bacteria Borrelia Burgdorferi, the Lyme disease bacteria. That's pretty compelling. It's worth looking into. Lyme disease causes serious and debilitating pain when it is untreated and it is fatal.
Hi! My name is Tina, I'm 40, and I'm here searching for answers to many of the health issues I'm having and have been having for decades.
This forum really seems to be full of such wonderful and caring people. I sure hope to meet some of you over coffee at our computers sometime. There is not one person in my circle of friends that is dealing with the same issues I am and it makes me feel as if I'm so alone. They do get tired of me canceling get-togethers and dropping out of clubs, etc... and don't understand how I can feel so great for awhile and then feel so bad, back and forth.
My dear husband is a sweety and is always here for me, but he can't say things like, "Oh, yes! I know how that feels!" or "You know, when I have that symptom, I do this or that and it really helps!" I'm hoping for just such connections here and I'm hoping maybe I can be a voice of support too in any way I can. :o)
My husband was diagnosed with MS in 2003, He is a firefighter and when his symtoms started they hit hard, he was out of work for a year barely able to walk on his own. He has a great doctor and we beleive in the power of prayer. He has been back on the job now for 5 years. He does take copaxen injections everyday along with pain meds and Neurotin. THere are some days he is more tired then others and days where his feet are burning really bad but overall he is amazing. Our 27 year old son was diagnosed with a rare disease 2 years ago called Adrenoleukodystraphy. It has some similarites to MS but is a totally different disase. So as a family we are dealing with a lot of heath iissues its always good to meet and be able to talk to people who understand.
I am in the wonderful world of LIMBOLAND! I was dx with TM but now because of those pescky brain lesions(15) and a ton of neurological weirdness from head to toe the neuro's thinking MS. Never in all my life did I ever think I would be dealing with any of this.It is very scary and frustrating .
It is nice to find people who are going through the same things mentally and physically.It's comforting....Take Care....
There is one way of self-testing that might aid you in knowing if your MS could be caused by Lyme disease. Someone with Lyme disease will most often get Jarisch-Herxheimer reactions when using antibiotics that are used to treat Lyme disease. Basically, if you happen to get on antibiotics and find that all of a sudden you are experiencing more joint and muscle aches and maybe some brain fog and just not feeling too well (minus hives and those types of reactions that would be allergic) you more than likely have Lyme Disease.
Some of the antibiotics prescribed for other ailments I had that caused this reaction were amoxicillin, doxycycline, bactrim and macrobid. So that's just four of them. There are others that will cause it as well. I know, however, that Cipro does not affect Lyme so you will feel just fine on Cipro. So next time you are on antibiotics, take notice if your joints start to hurt or burn and you get muscle aches and a general feeling of achiness. If you do, then you need to look into Lyme disease as the culprit.
Ten years ago, I couldn't walk because I suffered a severe MS attack that left me half paralyzed. I spent six months in recovery and therapy just to regain the ability to do everyday things like write with a pen or use a spoon to eat. I spent another year working hard to regain my mobility by practicing yoga and acupuncture. While I was recovering, I vowed to change my life. I adopted a healthy lifestyle and diet along with a strong will to overcome this disease. I decided that when I regained my ability to walk again, I was going to spend every day living my life to the fullest. Ten years ago, my life changed forever, and for the better.
It's been so wonderful finding resource/support groups like this. They also have some great podcasts at www.iwalkbecause.org (I like Lea's videos) and I hear they're looking for more great stories if any of you are interested in sharing. I'm thinking about doing it.
I too have been diagnosed with chronic progressive MS recently. I just found this website and will keep searching for the answer that makes me feel better. I feel better reading your posts and feel my Docter has pointed me in the right direction.
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