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Why do so many people who have not been diagnosed and are truly speculating that they may have MS waste time and energy focusing on something that may not even be part of their life?.!.!?. It's no badge of courage saying "Hi, my name is Bob and I  have Multiple Sclerosis...I am no cooler because of what I have nor am I some hero because of dealing with it on a every second of my life basis...based on alot of posts I have read on here alot of folks have not even been diagnosed yet they are living their life as they have and planning their funeral. To the gal in England, you are a doll...I feel for you and based on what your post said  about your  symptoms you sound like the female version of me...which means I would bet you have it. We have to read left wing ramblings about fillings and how mercury is leading to more diagnosis. Wrong! It may seem like more people have it because alot say they do when they dont and also the increase in population can make it seem like more folks do have it. I dont know one person with it. Anyways I bid adieu, best to you all and dont let a diagnosis hinder you...:)
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18 Comments Post a Comment
989477 tn?1249146420
most people i know dont even know i am being tested for it. i dont want their concerns or sympathy, i just reached out for help on here, because i have no answers and no one around me going thru this. i have a dr. that will not continue till i find financial aid thru a particular hospital, so i continue to goto the gym to work out while i wait, but thank you, i was wondering if i would be welcome here...and now i know, this was my first time ever on a chat site like this. i will not return.
867787 tn?1318939830
The reason some of who are undiagnosed go through this is that we are experiencing similar symptoms. In my case I had 1 neuro say that I have MS only to have another say he didn't think so I guess from this limbolanders point of veiw its like this, I do NOT want to be  ill, I want my life back! Idon't want to sound uncaring or cruel but if someone has cancer or any other disease they can make preparations & begin to deal with things, I don't have health insurance so that hinders me knowing a dx & its hard to deal with the unknown. I try to live my life the best that I can but with increasing disability & worsening symptoms its hard & you sometimes just want to know what is wrong & more of a reason is that I need treatment ( I don't want to get worse. I went from working full time running heavy equipment, & a very active lifestyle  that included gardening, enjoying the outdoors, & walking for pleasure as well as my health to not being able to be outside when its even a little hot, no hobbies, & can't walk alot of the time & then not very far, I can't hold my baby grand-daughters for fear my arm will go dead without warning & I will drop them. Basically I went from someone who was fiercly independant to someone who has to have someone present just to take a shower due to the weakness it causes. I went from a size 6 to gaining 45 lbs in 6 months time & having to cut my long hair very short because I can no longer style  it due to my arms wearing out.  I bow my head to pray & a shock runs to my toes. I have lost my house, 2 cars, & had to file bankruptcy due to medical bills & still I don't know whats wrong with me. So do I want to have MS or anything else for that matter ...Absolutely NOT!! Do I want to know whats wrong so that I can receive treatment.... yes I absolutely do. I would also find it refreshing to find a doctor who lives by the oath to first do no harm, that had 1 ounce of compassion, & a lot more common sense.   I have lost friends as well as family due to this unknown illness & believe me I would go back & change it if I could but thakfully on this site (even though I don't have a dx) I have found new friends who have been in my shoes, that are knowledgable, & most of all compassionate  & have given me alot of support. Do I kow I hve MS I don't although every doctor I have seen & what tests I have had it always come back to MS. I hope this helps you understand where someone who isn't dx'd yet is coming from. May God bless you.
                           Best Wishes,
378497 tn?1232147185
I know at least a dozen people within my 100-mile radius who have MS, and that's not because I'm part of any MS group. That's not any more relevant to why people come to the board than an example of not knowing any, however. People come here for different reasons, no doubt. Some people--a very few--who come here are probably suffering from anxiety more than anything else. Others tend to magnify what appear to be quite minor symptoms. Others likely have MS and are living their lives like they do even though they're undiagnosed because...well, they have MS.

And there are several--many--people on this board who have (1) positive MRIs, (2) symptoms, (3) signs, (4) even positive spinal results or EP testing, etc., who do not have a diagnosis. They're not here because they want to wear an MS diagnosis as a badge of courage or seeking pity. They're here because they need support while wending their way through the sometimes extraordinarily difficult pathways to a diagnosis of a disease that can be extraordinarily difficult to diagnose. For people with PPMS, the average time to diagnosis is especially long. These folks aren't here for a pity party, they're not here for attention, they're here for answers and support, and that is what they get.

In fact, that is what anyone who comes here--regardless of their prima facie presentation--receive. Sometimes, people do make comments that are of a political nature--often these arise from frustration about being able to afford diagnostic procedures, specialist visits, or therapies. Sometimes, they arise because this is a multinational membership with people from countries with different approaches to healthcare. We still all manage to do just fine in spite of these little political brushfires.

There's a good saying in the world of autism that applies to MS, and that is this: If you've met one person with it, you've person with it. No one case of MS is like another. They progress and relapse and remit differently. They affect different parts of the CNS differently to differing degrees of severity. Some people can go for years without racking up severe disability, while others are severely disabled in a short time. My grandmother has had it for 60+ years and has been in a wheelchair since before I was born. Yet I know another young woman who died from MS-related complications in her early 30s (it was the "fulminant" form). Your experience cannot be the standard for anyone else's because MS is almost uniquely idiosyncratic.

A supportive attitude is always appreciated. No one here knows exactly what is going on with anyone else on the board. The best and most positive thing we can do is offer support and information to the best of our abilities.

867787 tn?1318939830
Well said!! Thank you for saying what I couldn't quite find the words to say!
410281 tn?1254232664
Wow.  Good thing I don't know you by your face!  Do you really think any of us limbo landers want MS? No one WANTS MS! The thing about this forum is that it's full of wonderful people that will support eachother no matter what. You don't have to have MS to belong. And quite frankly, that's the way the world should be. Full of people who believe in and support eachother no matter what. We've had members be diagnosed with Lyme and other things.  Have you ever been in limbo? Do you understand what it means to have Drs tell you "nothing is wrong" over and over again when you know something is wrong?  Whether it is or isn't MS I'm just glad that I have found friends here!

For the rest of you,  Love you!
987762 tn?1331031553
I'm a little confused, you seem to be saying that the people who 'think' they have MS (I'm asuming that includes people going through dx too) are wanna be's, in other words, they want to have MS. MS being some badge people really really want to wear, i truely dont understand that concept.

I for one, do NOT want to have MS, i'll be more than happy if i dont get the badge, i was quite happy with managing all the weird things, weird I can live with and apart from my family and ocationally mension to my Dr over the approx 20 yrs the've been with me, no one else ever knew about them. My silence has probably done a lot to contribute to the disabled state I now find my self, would I be in a better state now if my Dr had even thought the possibility of MS 5 to 10 years ago, the answer is a resounding yes. DMD could of held back my fall into imobility, the idea of MS is a shock, frightening, confusing and i do not want it!

Your seemingly implying that no one belongs here unless they are dx, that would mean excluding people who do have MS or enough symptoms to dx MS by one Dr but not enough to be dx by another, do these people not belong?

I have learned very very quickly that the ONLY people who know what i go through are YOU that live it too, give it any name you want it would not make any difference to the shear relief of finding one other living person who knows and actually understands what it feels like when my body is high jacked. Your knowledge is invaluable to me!

410281 tn?1254232664
Well said!
867787 tn?1318939830
I agree ..well said!!
620877 tn?1282767697
You are welcome to your opinion.  We all are.  So here's mine:

To imply that anyone would WANT a diagnosis of ANY chronic illness is offensive to me.  

Are there people out there who want attention? Absolutely.  Do they "make up" a set of symptoms that "sound" like MS?  Maybe.  Are they in the minority?  YES.

Are any of us here for pity or sympathy?  No.  Empathy, a sense of understanding? ABSOLUTELY!

We all fight to try to find out what is happening to us; to find a doctor who can help us, really listen, and then HELP US!  We struggle with the unknown, the weird symptoms, the lack of empathy and understanding that our friends, family and co workers show us, because they (some of the time) can't SEE our symptoms and don't understand our struggles.

This forum for us, diagnosed or not, is a haven of KNOWLEDGE, SUPPORT and COMMUNITY that helps us COPE with what we are all going through.

If it were called the "I have weird neurological symptoms" forum - would your opinion of us here be different?  Should those of us who are not diagnosed not be allowed to post in an MS forum?

I am in the "highly suspicious/probable MS" category.  Where do I go, if not an MS forum?  I am here to learn, and prepare so that if I am diagnosed with MS, I can prepare myself, emotionally AND financially for the uncertain future that a diagnosis of MS can bring.

Please take this for what it is:  a wonderful, supportive caring community of people who all just happen to be posting in the same place...which just so happens to be a forum about MS.

562511 tn?1285907760
Hi.  All people who have a concern that they may have MS or have been diagnosed are welcomed here.  In fact, on occasion we have visitors who have other neurological problems that are having difficulty with one thing or another.  There are many intelligent and kind women and men on this forum who offer a great deal of information and support here.  

Nobody has claimed to be a hero or courageous, although I am so thankful for the people here who take their time and energy to help others and answer questions. They are heros to me and I think I can safely speak for others on this point.

Pertaining to those not having a diagnosis and are looking for answers.  They benefit just as much as anyone here and have a rightful place here.  I wish I had known about this forum when I had suspicions that I had MS. Could have saved me a tremendous amount of grief.  

We are made up of left wingers, right wingers and everything in between.   We don't have contests of who has the worst MS of all either.  Nor do we turn a deaf ear to those with seemingly milder symptoms.

Knowledge is the best key to take the best care of oneself.  Even the undiagnosed.  Even for those who discover the cause of their problems is something entirely different in nature.

While I respect that you can "feel for" one persons plight similar to your own situation, it does NOT diminish the plight of others differing from your own experience.   Peace.

941625 tn?1263585382

I am a limbo lander. Sorry that you feel I'm not welcome here. However, maybe your diagnosis process was immediate and so you are frustrated with those going through months and years of testing, labeling and misunderstanding before getting an answer.

I can understand why you might be frustrated, but you have to understand for those of us who wake up with numb body parts -- or whatever other symptoms we may experience -- this is not always a clear cut process.

I'm a probable MSer ... been having crazy things happen to my body for over eight years now. My mother has MS -- hers is "mild" and she was diagnosed immediately. I have MRIs with lesions and a thousand symptoms to go with, but no diagnosis yet because my lesions weren't near the ventricles, they weren't large enough and being as I had never been to the doctor prior to that episode they were loath to give a final diagnosis without a symptom history ... even though I could tell them a thousand things that have gone on over the years. Is that because it's not real? Is it because I'm a product of military medicine at it's finest? Or is it because I need to sit and wait as suggested?

Whatever it is, I needed somewhere I could go where I knew people might understand what I was feeling and experiencing. My family is supportive, but with the exception of my mom who is halfway across the world, no one can understand what I feel when things crawl under my skin or I can't feel my foot or stomach or whatever!

Here, I have found a place of understanding. I hope that you can understand that. You sound like someone who is very bitter about your life and situation. What you have is not a badge of courage or anything else ... it's just part of you.

It doesn't define you anymore than anything else. Everyone here just wants understanding. Can you not extend that compassion?

I would venture to say most people do not want MS -- but they do want a diagnosis. You have to see the difference there. When you have symptoms that scream MS, but no diagnosis ... it's scary and frustrating. A thousand things run through your mind -- a major concern being if you aren't being treated what further damage might that be doing to your body? How does this effect my family? Limbo land is no place to be, and we need a place to go with those who've already traveled that path.

I wish you the best. May God bless you in your journeys. I will pray for your bitterness to wash away, and you to find the compassion of someone who's been down this road.

God bless,
ArmyGirl 73
929431 tn?1247398532
Well said  
Avatar n tn
I have been thinking about this post since I read it yesterday.  I can understand being fruustrated coming to a place for help with a disease that you have and feeling like it's not what you were hoping for.  I understand wanting help specifically related to your disease and expecting a forum for that disease to do that.  I think that you can find that here though.  Being such an open group, there are those of us who are not diagnosed, but feel that we may be heading toward that.  There are people who feel that they have "cured" themselves and want to "help" others do that too.  There are a few who have a few things going on and are scared and thinking the worst.  I think that's all kinda to be expected with a large internet group like this.  Having said all of that, for such a large and open group, I think that this forum is very caring and supportive and helpful.

I am in limbo and have been for years.  I've been tested for and been told that it's probably many different things over the years. I've been told to my face that drs didn't believe me.  I've had hospitals refuse to see me.  It's very difficult to go through that and get worse over time without knowing what it is, how bad it'll get, what to do about it or where to go next for answers.  My last neuro put me in a "wait and see" catagory for MS. I have recommendations to repeat the neuropsychlogical exam and brain MRI. That's where I am right now and I'll find out what my new neuro wants to do later this week.  

Do I want to have MS?  Of course not.  Would I be happy to be told that I do?  In a way, yes.  To have an answer, whatever that may be, would be a huge relief for me.  To be able to tell dr's that I have "xyz" and be believed and treated would be a positive step for me.  Would I be sad and devastated at the same time?  Absolutely, as would anyone I think.  

I come here because I do feel at this point that MS is a likely diagnosis for me, but even if that doesn't happen, I know that people here are going through the same sensations, visual issues, numbness, sensations, pain, frustration and all the other symptoms that I deal with.  There are people here that truly do "get it" and understand how I feel whether it's physical or emotional since someone here has been or is also where I am at any given time.  That kind of support is truly priceless and very precious.  Even if it turns out that I have something else or I never find out what is wrong with me, I still feel that my time here is valuable and I hope that others feel the same.
429700 tn?1308011423
I think your sentiment of living life to the fullest and don't worry about the negative things in life is a good one; however, I think your message, although well-meaning, was unfortunately lost by your choice of words.  

Most of the time when I choose unfortunate words, I have hurt someone else and want to take them back immediately after I've said them.  This mistake always occurs when I haven't considered how those words will affect someone else.  Frankly, there's no way to really know how someone feels until you've walked a mile in their shoes.  

The toothpaste is out of the tube and there's no way to get it back in there again.  Have I done this before (especially to the people I love)?  You bet ya.  I'm not Miss Goody-two-shoes.

People in this situation have a choice as what to do when they're in this situation.  Fight and defend what you've said without further consideration of how others may feel (especially if you continue to feel that way or to save face), apologize (which is really the hardest thing to do), or just run away (easiest choice).  Frankly, I've done all three.  However, I've learned after several years of trying to get along with my husband and others that when I'm wrong, it's better to apologize.  I often find that after I have really apologized that it's a good thing.  I am almost always am forgiven and life goes onward.  

My intention is not to cut you down.  I do think after reading your other posts that you are a good guy.  I also think you have a positive outlook on life when living with MS, and I sure hope that you will stick around to share how you knocked out those obstacles. I for one love positive people.

However, before you do respond (if you do), consider that being in limboland and undiagnosed is often times harder than it is to be diagnosed and have some hopeful treatment options.  The darkest time in my life was when I had very serious issues without any possibility of anyone figuring out what was wrong.  I wanted to die because there was no hope of the pain and progression of the disease to go away.

Again, I'm not trying to be flip about this.  I do hope you stick around to spread some of that well-needed positivity that you showed in your other posts.

Warm regards,
147426 tn?1317269232
What an unfortunate message.  People in search of a diagnosis are not MS Wannabe's nor do they think having MS would be cool.  They search because they are suffering.  Many suffer as much or more than those with a diagnosis.  When one's body begins failing to do what you need to do you search for answers.  Period.

We are one of the few MS forums that explore the experience in neurologic limbo and explain it in the context of MS when that is appropriate.  Often these explanations are revealing and helpful to those already diagnosed.  Few other places provide a haven of support, acceptance and education to those in Limbo.

I do think that there are certain people who only want to speak to others they KNOW to share their diagnosis.  When that is the case they need to find one of the many forums that limit membership to the diagnosed.  It would seem THEY are the ones seeking membership to an exclusive club.

The odd thing is that mostly what we share here is a common experience - not a common name for that experience.  Paresthesias, vertigo, weakness, visual disturbances, and spasticity are remarkable for what they do to us - not for what we name the cause of them.

As people discover that they have something different from MS they sometimes leave, but they often stay - for the shared experience.  If you want different people to talk with, it behooves you to go find them, not to criticize the group you find already here.

I wish you peace, but more I wish you a small dose of insight and empathy.

Avatar m tn
grow up & display some humility by apologizing to this group for your smart arse statement(s). a lot of folks on this forum are in real life pain and real life crisis and with no answers.

if ever close to a VA hospital there in TX why not walk in and make the same generalized statements to some of the vets there suffering who are looking for answers for their symptoms/condition(s). i suspect you'll walk away with a bit more humility and respect.

505094 tn?1240321031
I do hope you will take these replies to heart.  One thing I really appreciate in this forum is that everyone has the opportunity to say what is on his/her mind.  With so many doctors etc. telling people that 'that it is all in their head', that 'they have conversion disorder', or being trivialized-dismissed-not listened to-misdiagnosed etc., this forum is about support.  It is about not being so alone in the search for what is wrong.
It's taken me about 5 years to get a diagnosis.  Did I want it?  Heaven's no.  My mother has had it for 50 years, my sister was diagnosed just a few years ago, my cousin on my mother's side has it and I have a niece with it.  I've watched people die from it and people go into remission with it as has most people here.  So, do we shrink back into the shadows because people think we are making it up? NO. Please reconsider what you have said and how your words affect the people you are saying them to.
I also dearly hope that no one who reads your letter will feel that they can no longer write to this forum.  Perhaps you could explain 'why' you said what you did.  It might help us to understand you better.  Charley
883901 tn?1294004372
To be honest I have found your message very upsetting & I know this would have upset others on this forum too!!!!!

I think before you should have posted, that you may be should have looked more into detail about how long it has took some people to be diagnosed with MS. I have read myself where it has took years even though people where displaying the symptoms & having lesions till they got finally diagnosed. Does that mean then because it took years they bought this onto themselves.

Like many of us including myself I want answers to why my body is behaviouring the way it is. Yes I am so frustrated with what is happening, especially with the NHS, as they are not the best health service going & can take forever to even been seen. I know once I am diagnosed with what ever I have, I then can be put on the right treatment to help me through this.

Have I got MS I do not know!!! Do I want MS of course not!!!!!!!!! I have a close friend that has got the worse form of MS. I had to watch him go from a athletic young man to a man where he cannot even wipe his own botty, can not move 80% of his body, has to drink through a straw, so no I do not want MS.

I have found this forum very soothing at times as I feel on many occasions I am alone within my family circle, but when I come here I know that what I am experiencing I am not alone, as there are many who are also in limboland like me. This forum has also given guidence to others to check it is not something else that could be causing their illness.

I wish you the best & I am sure maybe you did not mean it to come out this way, but please imagine how you would feel going through what you go through & you had no idea what was causing it.

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