What is (or was) your biggest fear upon diagnosis?

Hi there,

We all have so many varied experiences, thought it would be good to ask what was your biggest fear when you heard you had MS? Or, one of the infamous mimics? And, I don't want to exclude our limbolanders -- you are a huge part of our family here. This is for you too! I hope this helps you too.  If even small, there had to be something you were scared of. If you feel comfortable, spill it! It's a good way for us all to get to know one another a little more.

My fear was that the Drs were wrong. As far as I was concerned, I definitely had a stroke. I wasn't afraid to have MS, just didn't believe they were right. Heck, I knew nothing about MS. And, I was smack in the middle of my 1st attack. I was definitely scared (though I'd never have admitted it to anyone then) each day waking up to what I lost most, which was the ability to think and react all at the same time - it was chewing, driving, looking, reaching, writing, listening and responding to people, etc.  Whole nother meaning to walking and chewing gum at the same time, haha

Seriously though, what got you going?

-Shell

[Quixotic1]

Thank you so much for bringing this topic up.  Looking at the forum in the last few days the titles are loaded with the words "scared", "terrified" "death".   It gets hard to talk about people's fears without saying the same thing to everyone.  Everyone gets scared sometimes,  we all make it through, we all will support you as you talk through it, and be sure that if you are dealing with uncontrolled anxiety over your health and future that you get it treated.

I thought my MS started after I had already lost my profession to vertigo, my security to bankruptcy and my emotional stability to a nasty divorce.  So when I suddenly could barely use my right leg - it just seemed like the next bad thing I had to deal with.  

However, once I got the diagnosis of MS, the thing that I feared most or, at least dreaded most, was becoming incontinent.I thought most everything else seemed handle-able.  And so, the worst scenario actually did arrive and is at max.  I am completely incontinent of urine.  And while it is a drag and a half, it has become just something I deal with on an hour to hour basis.   It has cut tremendously into my competitive ballroom dancing competition, but what are my options?  It's certainly not like I can ignore it and pretend it is not happening.

I think that I make it through one part of a day at a time.  Sounds very cliche, but there is a reason that it became a cliche' in the first place.  

It took a few years for me to find something to replace the career with - something that gave my life meaning.  And that is this forum.

In my family there was never much emphasis put on worry.  It was considered a waste of energy and led to nothing, but more worry and terror.

If I could make any recommendation to people immobilized by fear it would be to write down exactly what they are afraid of and seek the answers to those worries.  It would also be to seek medical and/or psychological help for uncontrolled anxiety.  True wild anxiety and fright can cause significant neurological-seeming symptoms.  Once the anxiety is controlled a person and their doctors can see what is left to investigate.

When a person presents to a doctor terrified of things for which they have no evidence, the doctors' first reaction is often to dismiss them and shoo them out the door.  This doesn't help anyone, but adds anger and frustration to the person's plate.  

Quix

[Lulu54]

Wow, Shell.  this is quite the question.  

for me my biggest fear has been to not let my MS become a financial drain on our retirement funds.  It's bad enough that our 401K's have been hit hard by the erratic stock market and will undoubtedly push off our retirement age a few more years.  

I stayed home for 14 years while my hcildren were young and was not in the workforce, coontributing to a retirement account. That put me a bit behind, but I have tried to make it up the last 20 years since I have been employed.    DH has always funded his own retirement accounts.  We're also counting on social security to still be around in about 8 years.  

Second greatest fear is being unable to work and having to go on disability.  I cover the insurance for both of us and it would be horribly expensive to get insurance for DH and myself, since we both have major preexisting conditions.  


Who else?  

Lu

[Sumanadevii]

My biggest fear was I would become a burden to my husband.  I have seen made plans for my care (which he can oversee) if the time should come.  

Anxiety is a terrible thing to live with.  I was in the emergency room last night unable to breath and scared to death.  I couldn't get my breath.  Naturally they ran all the tests.  All coming back negative.  It is just the legion on my brain stem.  I was given steriods, and an inhaler.  I saw my doctor this morning and we both agreed, I need anxiety medication for it.  I feel like a blanket is being thrown over my head and I can't breathe.

For each of us, we all react differently.  Those who know the real me would never see me needing something for anxiety.  Just not a person to get uptight.

[doublevision1]

I think my initial biggest fear involved ending up in a wheelchair, the stereotype of a person with MS.  Actually this is probably still my biggest fear, though I'm not hysterical about it like I was when I was first dx'ed.  Knowing more now than I did then, I realize many with MS never end up in this situation.

In those early days, I was very tearful when dx'ed, whenever I spoke about MS.  I could hardly say these two little letters without choking up.  I rembember breaking down in the MS nurse's office the first time I met her.  She tried to reassure me by telling me I wouldn't die from MS.  I remember thinking this sounded absurd...dying hadn't even occurreds to me....I wasn't afraid of dying from MS, I was afraid of living with it.

My biggest fear related to my actual symptoms at that time was never recovering normal vision.  It is probably 95% back to normal now after a year or so of persistently seeing double and looking cross-eyed.

I also feared people finding out that I had MS.  I was very secretive because I felt ashamed about it.  I dreaded the thought of people pitying me.  I'm over that now.


What I didn't worry about early on that some others might:
- treatment/self injections: the sooner I got started the better, I just wanted to DO something about it;
- health care costs: I took it for granted that my specialists appts and meds are covered, though I don't take it for granted anymore now that I know how expensive the meds are, and esp after hearing how even those WITH insurance don't always get covered in the U.S (not to mention those with no coverage at all);
- it didn't occur to me to be worried about incontinence, only because I had no idea at the time that this was an MS symptom; had I known, I think I would have feared this as much as or more than ending up in a wheelchair.

[MonkeyMom4]

My biggest fears aren't the 'being in a wheel chair' or peeing all over myself. (not that I want either...but I could deal with those..w/the help of you guys..lol)

My biggest fear is that my kids will just think that 'mommy is lazy and doesn't want to do things with us'. (wow, that's hard to type)

My oldest is already noticing lots of things and it makes me sad. It makes me even more sad that I can't say 'Mommy has ...... (this disease) and explain it to him in his own terms.

I was a major athlete growing up and looked forward to the day I got to coach my kids. My oldest just started kindergarten and I had a hard time making it through his 1 hr. open house.  It's the constant 'smiling like nothing is wrong' that is frustrating. I have a hard time even folding their laundry b/c my arms will get so fatigued.

I want to do things with them and for them.  I can definately hug them like no one else!! =)

[Sailorsong]

I'm probably a contradiction to most people with MS or any other illness for that matter. Why do I say this? It is because I don't and have never had any fear concerning MS. That is not to say that I don't get concerned and even a little bit worried at times. But not really a fear.

So why am I so different than most? Probably because of the inspiration of other people in my life in how to handle disabilities.

My first real meaningful exposure to someone that was disabled was my cousin who was 1 week younger than me. He had MD and was in a wheelchair by the time he was 8 years old. While my father was stationed in WI we lived close enough to where he lived and I spent 2 summers staying with him and my Aunt to help her take care of him.  It turned out to be a wonderful learning experience as despite having to rely on others for everything he was very happy with his life.

It has also helped me a lot that my father had MS. Up until 1 week before he died at the age of 82 he was active. Of course he was a stubborn old cuss and wouldn't let anything stop him. Sure it took him longer to do things, but he still did the stuff he wanted to do. He was ordained as a minister when he was 65 and finished his thesis for a PHD in comparative religion 1 month before his death.

With inspirations like these how could I be fearful of the future?

Dennis

[starryeyes1]

I would have to say my biggest fear is death from the MS affecting my breathing, where I develop pneumonia and can't cough. I want to live to be old and see my kids have kids etc.

My walking and balance was the first real symptom that started last year. Its never gotten better. Not necessarily worse either..I worry that since I already have these issues and cannot work anymore due to balance, how is it going to be in 5 yrs?

Of course, I constantly think about the possibility of being in a wheelchair and putting extra stress on my family. My dad has had MS for almost 30 yrs. He is in a chair and can only walk a few steps at a time.

The list goes on for me. Some days I feel ok with things and try to accept what is, and other days I feel trapped in this body and that its just one big nightmare I am waiting to wake up from.

Kristi

[JemmAus]

Aside from my fears which I have stated on here ( that "they" are wrong and I'm dying of something sordid), my second biggest  fear is "how will I do this on my own"?

Like Shell, I was- still am half the time- convinced I'm having a stroke or something. You'd think I'd know better after 3 years of the same thing.

My BIGGEST one though  is losing the ability to swallow. I told the kids, if that happens, shove some mega-drugs down my feeding tube and let me go,. I have no desire to end up being tube-fed.


I come from a long line of paranoid worriers. My father was an obsessive worrier. I hate that I cannot calm down, and feel so overwhelmed. As Quix says, that fear and worry in itself can manifest in neurological symptoms. I know this to be true for myself because so many times when a relapse was starting and I thought I was having a stroke, I'd call an ambulance in my terror, and the symptoms would subside just a bit when I was safely in the ambulance,  which made me realise that SOME of the problem was anxiety brought on by fear when a relapse starts. of course not all of it, but the haad spinning thing mostly.

I saw my GP today and asked about the vasculitis (my latest horror). He wasn't sure but said my neuro is one of the best in the entire region so have some faith.

Oh, I get afraid that I will collapse when out in public. the longer I am out shopping, and sometimes it happens after maybe 5 minutes, the more unsteady I become, the more disorientated I feel, my balance becomes atrocious, and I think I will collapse. I worry then that they will cart me off in an ambulance and shove vile drugs into my veins and I'll have a bad reaction (which I have done with so many drugs, hence my fear - yes another one - of drugs) and it'll all be awful.

I worry that my son, who is 13, and lives only with me, will come home and find his mother dead on the floor, from whatever disease I think the neuro has misdiagnosed this week.

I worry that I really WILL have a stroke, and that when the hospital sees me, they'll say, oh it's just her MS, and ignore the stroke.

I am ranting. Good thread, let it all out!

And yes, I too noticed the 'fear" theme happening lately. I contributed to the horror of it all.

Maybe one of the worst things is that we are no longer in control of our own destinies?

I'll shut up now. Thanks for starting this....

Jemm

[starryeyes1]

Jemm-

You took the words out of my mouth. The swallowing thing, just basically existing with a breathing or feeding tube is a huge fear for me.

I have wanted to express my fears recently. I read a tabloid talking about Annette Funiccelo (actress from the Mickey Mouse Club) that she had died from complications to her MS.

This news settled in my brain and I couldn't let the anxiety go. It weighed on me for days.

Anyway- thanks for this thread!
Kristi

[twist330]

Ok so I am a Limbolander sort of dx with RSD by a general medical consultant but the neuro has poo poo'd this but can't say what it is. But my first thought after seeing my GP about my Symptoms he asked me if I thought I had a Brain Tumor this hadn't crossed my mind until he meantioned it and when he refferred to the neuro, it was obvious the neuro  was concerned about something.  (I have had 2 cousins that have had brain tumors)

Fears
1. Could my family survive financial with out me working or even dying. And was the business I run in a state for some one to just take over or if it had to shut would that drain my family finances After much worry I had a plan of action in my mind. ( the kids have nearly finished there education, we could easily down size the house etc...) Some time later I found an insurance policy my DH pays for through work, a large sum is paid if either of us kick the bucket! And there's a pretty neat sum if I am Dx with MS. So I should never have worried in the first place. Incidently I had pre signed cheques for the business, should I not have been able to do so.

Having been told NO tumor but there is a lesion and MS was meationed for first time lots of tests ordered.

2. My DH not being able to look after me. He has little patience, can't stand watching children eat. We even laughed together over the fact I would starve! He often makes, dare I say it, rude comments about people with "sympathy crutches" in his defense his line work  deals with people claiming benefit they are not intitled to, he also has a sister who has never worked a day in her adult life because she's not well - NOT. I pointed out this was his punishment for all those rude comments he's made!
He's doing ok at being the carer at the moment but I can feed myself still!

2. Incontence, wheelchair, loss of independence.

When dx with RSD all the above are still there but as I don't fit the norm for RSD and my neuro says it's not RSD :-

3.They have missed something. (I have abosultely no faith in the hospital, this is because my father was having brething difficultes, he was sent there for an x-ray they reported to his GP that it was fine, 4 weeks later he was at the same hopital for a routine outpatients appointment nothing to do with the breathing. A senior nurse noticed how he was struggling to breath kept him in hospital re did the X-ray along with other tests. he had a tumor so big they could not tell if it was in his liver or lung to start with. infact it was both. They gave him 6 months to live. On this occassion they were right.) so no faith.

The neuro still keeping a check to see what happens so thats good. When I see him next I'm pushing for a 3t MRI at a different hospital.

[essdipity]

I am rather like Dennis. I can't say I have any big fears about MS.

Maybe it's because I'm one of the oldest here, but I've seen and lived a lot of life, and hope I've gotten wiser in the process. I've learned that the vast majority of what gets worried about never happens. I've learned that there are far worse things than physical disability, having lived through some myself.

The biggest thing I've learned is that worry and fear only serve to corrupt today. I don't want to ruin what might be a pleasant and useful time by projecting a lot of fears about the unknown. What is going to happen will happen. Why have that experience twice---once by our fear of it, and once by the reality?

A thousand years or so ago, when I was in eigth or ninth grade, we read Julius Caesar. Old Shakespeare had it right:  'The valiant never taste of death but once.'

ess

[Eyesnlegs]

I think mine is all of the above:

I am the main breadwinner in the house earning 4 times the salary my DH does - bless him for all his hard work!

So workwise it was losing my job and having to live on benefits, then not losing my job and having to keep working when it is so obviously making me worse.

Like Lulu I came very late to a career after being married to a pyscho for a number of years (no not an exaggeration and actual dx-  ask me sometime about it) I married my wonderful better half and he packed me back of to finish my education. So I have only been contributing to retirement for some 14 years.

I get scared of losing my independence more than anything else and needing my DH to turn into a total carer instead of a lover.

Most of all I fear this bitterness I still feel will follow me all my life and I will never stay cheerful whilst facing all this as others seem to.

I know you are right ess but it is sooooo hard, when my days are filled with sitting in an office doing stuff that I used to love and now resent as it seems so trivail and it takes the little energy I do have to enjoy life. Work/life balance with half a cake eh?

Pat

[HVAC]

My biggest fear was this was too expensive an illness and I would become a burden to my family. This has come to pass.I am now having to make twelve monthly payments to cover my last Neuro Exam with MRI at close to $1000 and yes I am on the State Employees Insurance Plan the biggest in the State. In six months I will need another $300 to see the Neuro which will go on 12 monthly payments while I am still paying on the other. So I will be paying Duke Hospital for the rest of my life.

Alex

[Sumanadevii]

I think fear, like anger, is just an emotion.  It is what we do with that fear that will tell the story.  Do we let it control or life or do we control it?  Fear is a normal human emotion.  To pretend we have no fear is silly.  We all do.

[figuerpa]

My biggest fear as of now is not finding a dx. I am scared that I will live like this the rest of my life without having a name to put to what is going on with me.

I can't really add to what my biggest fear is about MS because I am not dx'd but if I were to get dx'd I think my biggest fear would be not being able to walk or swallow. I have problem with both of those now at times.

I have a cane handy for long distance walking and sometimes I can't even swallow my own spit.

So those are my fear but as I said my biggest fear is never having a name to put to what is going on with me.

Paula

[twist330]

I have to agree with you,all my neuro will sat it is "it may last a year or 2 then dissappear or it maybe here for life". Also it causes many problems as to what you tell people. I recently renewed my travel insurance and it caused all sorts of issues.

[sllowe]

Ess - words to live by.

All - keep this discussion going! It's inspirational. Whether you had fear, just concern, wondering thoughts, or not, it's important.

Maybe if we throw it all to the wall it will stick!  And then, we'll be done with it! Ok, I'm an desperate optimist, and I know it's not that easy, juuuust hoping it could beeee.

Any more?

[Sparkysarah]

Ok so facing my deep fears is perhaps a challenge (and yes even therapists run away from emotions!)

I was diagnosed six months ago and my fears remain fairly constant;

Losing control of my life and independence
Being in a wheelchair and having to rely on others for anything
Not living to see my grandchildren and also if I do.... then not being able to be a practical hands on granny (Eldest son 20 and youngest daughter 15)
Not living to see any of my children get married
Being a burden and embarrasment to my children and huband
Dying prematurely before I have done all the things I want to do, listened to all the music that I have yet to hear, been to all the places I still have not visited

So when some of these worries come into my head I am able to talk myself round some of them kicking the irrational ones away such as....worrying unnecessarily about my kids getting marrried and having kids as I know there is every chance that this will happen.

So time to get on with living each day and in the moment.

Love Sarah x

[Wobbly]

Losing what I used to do in my life, our lives have been changed drastically from this Dx and I still want to wake up and believe this is a dream (nightmare).... but no luck with that.

I guess the one thing that changes our lives mostly is my walking... I can no longer do what I used to because my legs wont' let me.

take care
wobbly

[Quixotic1]

Pat - I'll pit my psycho against your psycho.

I think ess was commenting that is isn't in her nature to fret and dwell on her fears, not that she has never been afraid.  And that really is the topic of the thread.  What do we fear (or have we feared) and how do we react.

Jemm - You are not to take this discussion as any finger pointing.  You are only a part of a group of people venting about fear.  We always try to see these patterns and get some kind of constuctive (or instructive) discussion about them.  Google is STILL off-limits, lol.

All-  So many of our worries, concerns, and fears are the same and seem to stem from loss of control or failure in our perceived roles.   I do think this is a great idea to put out in the open.  One - in the light of a rather non-emotional discussion we can see that some fears are a bit silly, although they feel very real.  We can also see that all of our friends deal with the same uncertainties that we do.  

One thing I would to say come from something someone said a while ago.  It was something to the effect that "I am afraid I will not be the best that I can be."    First, one has to comment that this might knock you out of the US Army, since that is one of their slogans.  But, more to the point, I see that there is an inherent comparison of "what one can do NOW versus what one could do pre-MS."  

Now, is that fair to ourself?  Should we really compare our "work product" now with what we could do before we became ill - and, by the way, when we were younger?  We can only be the best at doing or being "whatever" with the abilities and energy we have at our disposal TODAY.  That may mean words of praise from a seat in the shade versus an active role in a game or sitting animatedly as someone tells of their daily events.

If we always compare ourselves to what we were (which is often what we "wish" we had been) in the past, then we will almost always fail.  If nothing else we are growing older.  I am a firm believer in giving ourselves permission to fail and not tear ourselves up over it or to attempt a smaller success than we would have been happy with years/months ago.

I know this discussion is about fears, but I will share a huge disappointment I had after leaving practice, the bankruptcy and the divorce.  I became unimportant.  After moving from the little town where I was the only pediatrician, I moved to a city where no one knew me.  I was ill, gaining weight, unsteady on my feet and was npot an impressive sight for people to see.  I didn't have "automatic stature" when entering a hospital.  When needing to have my credit checked to rent an apartment, I saw the disaproval and doubt as they saw my bankruptcy.  That was hard.  

I realize now and even did then how egotistical that sounds, but it was true.  And, the reality is that I missed it, still miss it now, sometimes.  It took some years before I was comfortable - really comfortable - with anonymity.  Now, I really don't give a hoot in a hailstorm if people recognize me.  And day before yesterday when I had an Epic Flood at a fabric store and was trying to make my way through the masses at the big Labor Day sale toward the restroom - I was glad no one knew me or cared that my pants were soaked in an unmistakeable and  classic pattern.

I was too sick when this whole thing hit to fear "losing who I was or who I perceived myself to be".  Learning so late in life that a career do not define a person was a hard thing to do.

Wobbly - I know how you feel about wanting to wake up from a dream.  I was I my sickest with the vertigo at the turn of the Millenium.  Part of me really hoped for the Apocalypse.  The whole thing would be over and I wouldn't have to deal.  I woke up the next morning with a kind of rueful disappointment.  No such reprieve.  But, I did see the funny side to that whole thing.

Quix

[lovemy6monkeys]

My biggest fear is optic neuritis, losing my vision for any length of time. It is the reason I have pushed so hard to find out what was wrong with me, and why I would not consider giving my first neuro another minute of my time (after she very politely suggested maybe it was anxiety causing my symptoms). I am lucky in my current neuro.

I have an online friend (from an online mommy playgroup) who has MS and was diagnosed very quickly and dramatically. She gets ON and can lose her vision for weeks at a time. She is such an inspiration, does not ever let it slow her down...heck, last winter she designed and knitted my 3 youngest kids winter hats, all while not being able to see...and the hats are flawless!

And yet, losing my vision still scares the stuffing out of me! I hate that my eyes seem "off" a lot. I know my pupils are not always working well...at times if I walk into a dim room it seems darker looking than it should be and I can barely see. I get photophobia sometimes. I try not to dwell on it too much.

I was actually relieved and glad to be (mostly LOL) diagnosed and when my neuro offered DMD. I honestly think this is my fighting chance to delay progression, and I am going to fight that progression with every drop of fight I have in me, and when I think I have no more fight, I will look at my children's faces and keep fighting this fight so I *can* keep seeing their faces, so I can be here. I might not be the Mama that runs around at the park with them, but I want to be the Mama that takes them to the park, even if I just sit on the bench and watch them play.

I was more scared of not being diagnosed before I had a major symptom then I am of thinking what my future might hold.
~Jess

[mj111169]

I'm no where near a diagnosis of anything - but my biggest fear is not being able to carry my 2 year old daughter safely.  She wants me to carry her sometimes and I do - most of the time.  But there are times when I am afraid if I attempt to carry her down the stairs I may either drop her or we will both take a fall.  

My husband works out of state and is gone for long periods of time.  So I miss having him to give her a boost now and then.

I have taught her how to navigate the steps on her "bum".  I have a feeling that someday I may be joining her!  : )

Maureen

[jensequitur]

I guess maybe I'm lucky.  I've always been a cheerful sort of person, and usually things don't get me down.  When I started having all these symptoms, I knew something was wrong - but I didn't know what.  My thought was a brain tumor.  When I heard it was MS, it was a relief!

[essdipity]

We all are unique, so our reactions vary as much as we do. There is no right and wrong about this sort of thing, and no one can judge anyone else---about this or any other aspect of living with MS.

This forum is great in general, and this topic is especially on the mark, because it allows each of us to express ourselves and to understand others' viewpoints. That makes the MS burden shared, and thus easier to bear.

There have been many comments in this thread, and I'm hoping for many more. It seems most people are finding this topic very therapeutic.

ess

[michelleislay]

what an excellent post...i have been waiting for the time to sit down and read through everything and it still has not come, but i wanted to quickly weigh in on it before it skips to the next page, and i will come back to read all soon.

i think for me the thing i fear most is not being taken seriously.  i haven't thought too far ahead to the future about what a diagnosis might mean to me and seem a little stuck with living in shadow of the last neuro appt., whereby i felt completely discounted.  

it's a strange place to be, because while i am truly hoping the mri's come back clean and negative for anything at all, that scenario would support the neuro's theory that i am just fine and need a little physiotherapy.

irrational i know as i now have proof that back issues are not my problem, and i will definately communicate to her next time that anxiety does not play into it for me either.

ok, and perhaps i have also spent some time worrying about how something like a dx of ms would effect my kids...

xo michelle

[johnniebear]

I guess I've had many concerns,  the biggest is how will I be able to care for my wife & family.  At 50 and self employed , can I continue to generate an income with this MS?

We surely thought at this age,  the kids are grown & gone and we are free to travel a little & think about when and where to retire--  that's all changed and I'm ok with that as long as I'm not a burden to my family..

Then all of sudden an MS moment pops up from time to time,  we took our three old Grandson to the Zoo & he wanted me to pick him up and he wanted to  ride on my shoulders-   I couldn't take the chance with the balance issues,, Thank God he is only three and forgot about it later.

Best of Health to all

John  

[supermum_ms]

I've been pondering this for a few days now, funny but thinking about this has actually made me think about things that i havent been willing or ready to do, sometimes the future is dark but i should of been a girl guide cause i've always got spare batteries lol. As odd as this will sound, i've never had to worry about anything because those i love do it all for me, I grew up hearing "you cant do that, xxx will happen and then what will you do" so i've always said "yes I can, if it happens so be it".

I would climb the tallest trees, joined a boys only club because they said I couldnt but I did. I swam miles to shore in shark in fested water (lucky they were not hungry), I didnt get the nick name JJ (jesus janice) for nothing lol. I've always thought i was strong enough to face anything, and sometimes i have had to be. I've had so many bumps in the road of life, this is just one more that i have to face, oh i'm kicking and screaming but still i will go down with a joke on my lips and a smile in my heart, I know no other way to be.

So what do i really fear, well apart from being forgotten in a dusty corner with a lamp shade on my head, I fear loosing my mind! Take my legs, my arms, my sight, take everything but do not take anymore of my mind, it is the one thing, the only thing that is the sum total of and essence of ME!!!

Cheers..........JJ

[Mand125]

Sorry OT but I just had to say I loved reading how you got your nickname (JJ).

I hope you are feeling a bit better.

Mand

[doni54]

Ummm...I have many of the same fears as some of you, but I guess my biggest fear is to never have a dx, whether it be MS or some other monster.  It's hard to live through days when you can't think, or walk or talk and your own family looks at you and you know they wonder if all this is real........sigh........

I can remember feeling validated about MS when my GP said, "You are classic MS, what's wrong with your stupid Neuro?"  That lasted a couple of months, but I KNOW without a firm dx from a neuro that I am still consider a "Limbolander".

I have gone back to work as I didn't have a choice, and it becomes really difficult to hide my health problems.  Having to get up 2 hrs earlier than most folks would, just so that I can have plenty of time to take care of bathroom duties and pray that I don't have an accident on the way to work, or at work.  

The days when the tremors take over and I'm using the computer and my fingers go nuts and click the mouse 4 or 5 times instead of one, or when I'm having to answer the phone and call people over the intercom and I can't form the words......it's just so embarrassing.

My second biggest fear is losing my eyesight.  My right eye is never clear anymore and some days practically useless.  I think I can handle the urine/bowel incontinence, the twitches, the buzzing, the burning, the spasms, the spasticity, the numb leg, the walking like Frankenstein's monster, etc., etc., etc.  But the thought of losing my eyesight..............I just don't know what I would do, or how I would ever handle that.

One bright spot is that soon I will be covered by health insurance and maybe, just maybe, I will have the opportunity to get my dx and at long last not be wandering around lost in the land of limbo.............

doni

[Jepster]

I've been thinking about this for the last couple of days and I've come to the conclusion that the reason I don't currently fear anything is because my Sx so far have been mild and have cleared up, bar pins and needles. I guess it's different reading about other people's Sx than having them yourself. 

I was diagnosed last week, mainly due to a radiologist's report stating pretty categorically (apparently) that my lesions fulfilled the McDonald criteria. Clinically I doubt I'd have come close.

Having read people's stories on these boards, in some ways I feel a bit guilty about my diagnosis - there are so many people out there in limboland who're really being hit with awful Sx and yet are being dismissed by the practitioners. Therefore I guess that my main feeling towards the Dx is 'false pretender' - I'm really, really grateful for my current position, but wish that everyone could find medical support for theirs.

[Weakandfalling]

Hi, sllowe and all!

Thanks for including us Limbolanders too!

My biggest fear is not getting a diagnosis, of dying like my mother did with similar symptoms of weakness, falling, balance issues, aspiration, respiratory trouble etc, but no diagnosis.

Second biggest fear is being given an incorrect diagnosis.

Third fear is being diagnosed accurately with ALS.

That's it.  Those are my 3 biggies!!  Thanks for asking!

Weakandfalling

[Weakandfalling]

Give feeding tubes a chance!!  Once you have a PEG tube, you can still eat normally if you want to.  Of course, once you lose the ability to swallow that ends that.  But still, most people I've heard from who had feeding tubes greatly appreciated them and wished they had gotten them earlier because the feeding tube allowed them to stop the lengthy mealtime struggle they had had before getting the tube, helped them to get the nutrition they needed for maximum performance.  Have you spoken to any people with feeding tubes?  If not, it might help put your minds more at ease.

I have had a couple of times when I could not swallow at all.  But then after napping for 4 or more hours, I regained my ability to swallow - it was fatigue that had blocked it.

WAF

[momma2abcd]

my main fear is ending up in a wheel chair, my legs get weak after awhile and start hurting so then that leads to me to fear if my husband will be with me till the end of my life if I end up in a wheelchair will he continue to support and love me.

My other fear is every time something hurts in my body I think it is something else and maybe not MS and it could be fixed but I let it go and that situation gets worse but I just pass everything as MS symptom.

[Audrey_M]

My biggest fears? I’m in Limbo Land, so that’s my jumping point. I’m going to echo a lot of what others have said.

-I guess I’d have to put on top of the list not getting a DX and continuing to see the quality of my life and health decline. Right now, it’s the fear of the unknown. I’m not the same person I used to be physically, mentally or emotionally. I have accepted that much of what is going on is the new me and is not reversible. If I knew what it was, I’d be in a better position to mentally and emotionally prepare myself to be able to deal with it.

-Like others of my age group, I worry about how this will affect me financially. I’m in my mid 50’s and a single parent of a 20 year old. What if things get to the point where I cannot work? My employer does not offer disability insurance. I have little built up in retirement plans and having worked for non-profits for many years.We have just eked by financially. I have no nest egg and would not be able to afford health insurance. Ironically, when I was in my 20’s, I worked on Wall Street and was raking in the big bucks. My life would be much different now if I had followed that path, yet I am happy with the choices I made.

-As far as a diagnosis is concerned, I would be relieved to have one, no matter what it could be. I then would be in the position to understand what is happening to my body, what I can or cannot expect as the disease progresses and make my own choices. I remember when I was younger thinking about how I would respond to a diagnosis of cancer; my thoughts on the subject are very different now. With a diagnosis, I would be able to take it one day at a time, knowing that I am deliberately choosing my path.

Thank you for bringing up a very important topic.

This is also the opportunity to stress the importance of having a living will and to understand what it can and cannot do for you. Laws vary from state to state. If you have strong beliefs in terms of medical intervention, please take steps to write a living will. If the thought scares you, think of it this way; a drunk driver is much more likely to kill you than MS.

Audrey

[twopack]

When first diagnosed, I was afraid to experience the fullness of the anger and sadness brewing inside.  I realized I had to give up the lingering hopes for a simple cure of all that ailed me.  I had to admit I would likely never feel fully energetic and well again.  I'm still coming to terms with this.

My vision has deteriorated.  Even as a child I feared blindness.  My greater fear now is losing the written word.....communication......independent learning.

I'm afraid that when I choose actions to conserve my energy (or because I've already used all I had for the day!) people will see it as being lazy or an exaggeration of my limitations.

I'm afraid I won't have the inner strength to support my outer weakness.

I'm afraid my world of experience and interests will shrink until MS is the entirely of my life.  I fear being consumed by living a disease instead of living life.

[doublevision1]

bumping re: Bob's recent similar post

[sllowe]

I'm glad this was bumped.

I've re-read it and it reminded me of who was facing what and I'm wondering now if anything has gotten better or worse since we started talking about it.

My add on would be when now looking to borrow money, I actually weighed in timeframe. Figured I'd better get it now while I still can, and payoff in the shorter timeframe rather than longer.....I guess it could be described as fear of what's 15 yrs down the road, but I felt mostly concern and wouldn't want to put a huge burden on my family if I couldn't provide after that time...crazy....I'm usually better at ignoring things! lol

So glad this was bumped, I forgot about it!

Add on, PLEASE!
-Shell

[territorial]

Great Question.

My biggest fear is what it is going to do to my marriage. My husband does not do well with me ill. He goes into panic mode when I have the flu and becomes very overwhelmed with everyday stuff. He is a very negative person and I am the positive upbeat one in the relationship. He is very scared of the future right now. I feel like I have to keep my fears, complaints, symptoms to myself so as to not cause him extra stress.

[bridgeport]

Hi thanks for focusing on the question I tend to pretend doesn't exist. I have to say that my biggest fear is never having a dx. I am wheelchair bound, Starting to wee all over myself not knowing it ,have foot drop in my left foot with a lot of pain. I have weakness tingling in all four limbs, and none of these are my biggest worry. I just want a doctor to take me seriously. I want them to do what they promise. I want proof of ms,or huntingtons,or distonia,or whatever else he thinks it is...Yet he keeps saying "We probably will never know what you have". This after spending twenty minutes with me.
   Sorry didn't mean to rant.    My doctor is a Neurologist at the VA .
Bridgeport

[Mike_Shuswap]

One of my biggest fears was that I wouldn't be able to work anymore......I have been unable to work for 2 years now.

My next fear was that my insurance company would force me back to work doing some useless function after 2 years on LTD......I can put that fear to rest, my insurance co has decided I'm not suitable to do any job at this time.

I didn't want to be disabled, but I am. I'm recieving Canada pension plan disability payments and long term disability payments from my works insurance plan. I do feel very fortunate to have this income, although it is considerable less than what I used to earn.

My current fears are that I'm loosing it mentaly. I have noticed more and more lately that I can't remember anything, like my folks phone number, etc.. I can't seem to do simple math without really screwing it up a few times first.

And now we are waiting for my wifes breast biopsy results. I'm very afraid for her. I can not bear the thought of her sufferring through breast cancer treatments, and I can't bear the thought of her  not being here anymore.

mike