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Old 03-06-2008, 11:08 PM #1
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Unhappy To anyone who has lived in Limbo Land...

for those out there who are like me.

the incessant needles, tests, negatives and positives of test results.
the never understanding always feeling, shell of a person who never knows what life will throw next.
pain, transient symptoms, sympathetic but confused doctors, is it all in my head???
can't move forward can't look back.
raw emotion that never shows! must be strong must be brave, must cry with no tears.
depression, they say it is all anxiety, they say it is all in my head. how can something that is so real and so debilitating be in my head?
family that has dreams bigger than you can fill. with hopes bigger than you dare to believe.
dashed hopes, random attacks, painful and terrifying attacks. never the same twice never understood.
What is this monster. I am so terrified. my doctors say it was their treatment for a misdiagnosed illness that caused the weakness, why does it persist? then suddenly disappear?
Good days????? what are those??? is that the fantom dream for which i strive?

Friends who believe you but then drift away like a floating leaf as soon as the tests come back negative to the suspected culprit? Does ANYONE understand. a lonely illness, a savage illness! an merciliess illness. will it rob me of my ability to think and my sharp mind? where will it strike next? when? how?

not yet dx yet what else makes sense? haven't we ruled out EVERYTHING else? how many more needles how many more tests.

with no insurance it is soooooo overwhelming.

must be strong, must not give in. to talk is to give in according to my family. thus i am locked in a vault of silence. I don't know if it is MS. It might not be. but the more i learn the more i realize that though they think it is all in my head. they might just be right. little areas of damage that didn't dwell within before. so scary, so agonizing is the wait.

it is said that the worst part of the hanging is the waiting. would somebody PLEASE hang me or set me free but don't keep me in the land of perpetual tortuous wating! somebody help! does ANYONE understand what it is like to be in my shoes. they are shoes filled with pain and turmoil both inner and physical. is there anything that i can do? is there any hope left in life? what if it is NOT MS. what then. I know that sounds hypocondrical but is there an explanation or will i be forever dammed to Limbo Land?
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When life gives you a ton of lemons, go grab some sugar! It makes the lemonade taste better! - Rachael
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Old 03-07-2008, 07:08 AM #2
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Hi bobcat:

You are a very gifted writer, you sum up what many of us feel.

Limbo is not a good place to be, especially when you are a Type A who needs answers. We all need support.

Sadly, many of us can't get the support of those we love. That's why there are these forums. It was my MS neuro who suggested finding a good forum - this is one - and they has been my lifeline. It is where I come for comfort and support and friendship - people on the forum go my speed. I get my questions answered and my bad days, my angry days understood. My family can't help me, they expect me to help them, and I can't always do it.

I don't know what to say except some of us understand. The last 10 years for me have been tough. That's when I went on disability. Living in Canada my medical care and drugs are paid for, I can't imagine the discouragement you must feel, for you deserve decent medical care and without insurance how can you possibly get it?

I can no longer play the piano or organ, or follow a knitting pattern or read a book. I cannot walk the many kms. I used to love. I sleep too much and struggle with pain and the irritability it brings. My marriage ended after 34 years because my husband didn't have the wife he used to. My bowels keep me inside more than I would like. There's more, but what difference would it make? All the tests rule out everything.

So we sit with a dx of possible/probable MS, the uncertainty reminding us daily that our bodies have betrayed us and the medical community has no answers. Sympathy from them? Maybe. Or maybe they think we are part of that group of psychiatric patients who can manufacture symptoms. For me that's how it feels.

Sometimes there are no answers, except that 5% never show lesions. That's not much comfort because we are back at square one - limbo.

Time helps a bit, just not enough. I too want an answer - any answer. Sadly I don't think it will be forthcoming any time soon for me or my friends on the forum I frequent.

Courage isn't a one time thing - it's a daily act of the will, like love. Your gift of writing will help others here and in turn, they will support you.

Hang in there bobcatsrule - you are among friends. I truly wish you had the money to get the help you should have. It's not fair.

Last edited by cricket52; 03-07-2008 at 07:14 AM. Reason: brainfog
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Old 03-07-2008, 09:16 AM #3
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Quote:
Originally Posted by cricket52 View Post
Hi bobcat:

You are a very gifted writer, you sum up what many of us feel.

Limbo is not a good place to be, especially when you are a Type A who needs answers. We all need support.

Sadly, many of us can't get the support of those we love. That's why there are these forums. It was my MS neuro who suggested finding a good forum - this is one - and they has been my lifeline. It is where I come for comfort and support and friendship - people on the forum go my speed. I get my questions answered and my bad days, my angry days understood. My family can't help me, they expect me to help them, and I can't always do it.

I don't know what to say except some of us understand. The last 10 years for me have been tough. That's when I went on disability. Living in Canada my medical care and drugs are paid for, I can't imagine the discouragement you must feel, for you deserve decent medical care and without insurance how can you possibly get it?

I can no longer play the piano or organ, or follow a knitting pattern or read a book. I cannot walk the many kms. I used to love. I sleep too much and struggle with pain and the irritability it brings. My marriage ended after 34 years because my husband didn't have the wife he used to. My bowels keep me inside more than I would like. There's more, but what difference would it make? All the tests rule out everything.

So we sit with a dx of possible/probable MS, the uncertainty reminding us daily that our bodies have betrayed us and the medical community has no answers. Sympathy from them? Maybe. Or maybe they think we are part of that group of psychiatric patients who can manufacture symptoms. For me that's how it feels.

Sometimes there are no answers, except that 5% never show lesions. That's not much comfort because we are back at square one - limbo.

Time helps a bit, just not enough. I too want an answer - any answer. Sadly I don't think it will be forthcoming any time soon for me or my friends on the forum I frequent.

Courage isn't a one time thing - it's a daily act of the will, like love. Your gift of writing will help others here and in turn, they will support you.

Hang in there bobcatsrule - you are among friends. I truly wish you had the money to get the help you should have. It's not fair.

Thanks cricket! You truly understand where I am coming from! I often feel too that i am like that. Viewed as the crazy symptom factor that belongs in a psyciatric ward rather than the real world. the good and weird and i do mean wearid thing about america is that in someways it is almost better to NOT have insurance. that is if you are resourceful. I happen to be one of the resourceful ones. i have only been researching MS and things like that for 2 days now but so far, it is the thing that makes the most sense to me and even if i don't get dx with MS i will probably continue with this forum b/c 2 reasons.

1) i understand a LOT about the disease now (hey i took 5 physiological psyc classes in college. what can i say i'm a research/physio nut! )
2) weather it is MS or probable MS or what not most of the symptoms that i have seem to match this constilation of symptoms and so there are people here that understand me no matter how crazy i seem to be.

It is comforting to know that there are people out there weather it ends up being my dx or not that understand me for who i am and don't judge me on my bad days and who don't mind long "emails" (posts). I feel safe here, i feel understood here and i feel like i am a human being here not just a psyc ward inmate in a body that doesn't understand me and in a world that thinks at times that I'm crazy. i say a body that does not understand me becuase i have dreams, i have goals i have life to live and i can't seem to get that across to a body that has declared mutiny!!!! it is scary living in a body that is a little more than slightly defective. I have always enjoyed writing and I appreciate the complement! some people (him who was my major professor in college but is now just an awesome friend and used to get bombarded by my "eloquent" discourses in writing, via email) didn't always take to kindly to being bombarded but it is nice to be appreciated.

I enjoy life, and if i can get my body on board then I think I'll be ok.
friends are a and precious possession never to be taken for granted.

Sincerely, Rachael (bobcatsrule)
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A Good friend is one who knows where you have been, accepts you for what you are, and encourages you to grow! ~ Anonymous
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If you were happy everyday of your life you wouldn't be a human being, you'd be a gameshow host! ~ Gabriel Heatter
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When life gives you a ton of lemons, go grab some sugar! It makes the lemonade taste better! - Rachael
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Old 03-07-2008, 09:51 AM #4
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QUOTE put in point form:

Quote:
Originally Posted by bobcatsrule View Post
for those out there who are like me.

the incessant needles, tests, negatives and positives of test results.

the never understanding always feeling, shell of a person who never knows what life will throw next.

pain, transient symptoms, sympathetic but confused doctors

can't move forward can't look back.

raw emotion that never shows! must be strong must be brave, must cry with no tears.

depression

family that has dreams bigger than you can fill. with hopes bigger than you dare to believe.

dashed hopes, random attacks, painful and terrifying attacks. never the same twice never understood.

I am so terrified.

why does it persist? then suddenly disappear?

Good days????? what are those??? is that the fantom dream for which i strive?

Does ANYONE understand. a lonely illness, a savage illness! an merciliess illness. will it rob me of my ability to think and my sharp mind? where will it strike next? when? how?

with no insurance it is soooooo overwhelming.

must be strong, must not give in. to talk is to give in according to my family. thus i am locked in a vault of silence.

little areas of damage that didn't dwell within before. so scary, so agonizing.

they are shoes filled with pain and turmoil both inner and physical. is there anything that i can do?

Hi bobcatsrule,

I have had MS 17+ years, and have had many of the feelings you refer to.

They don't know what causes MS; what it is (autoimmune disease, or ?); whether we all have the same affliction; how to cure it, and/or even good ways to treat it. Even WITH the dx, most of our problems do not go away.

I guess you could say I lived in limbo for 12 yrs, because once they told me it was probably MS, I refuse further testing (i.e. a MRI, LP, etc.). I couldn't see the point in knowing . . . what would that change? I don't regret my decision.

I regret knowing that I have a incurable, progressive, dreadful disease. I preferred denial.

If this was something more serious, after all the testing they've done, they should know by now.

This MonSter will reveal itself only when it is darn well ready, and not a moment sooner . . . just like every other illness we might have lurking in our bodies. What will be, will be.

In the meantime, there are a lot of people here, dx or not, that understand your anguish.

Cherie
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Old 03-07-2008, 10:18 AM #5
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Cool thanks from Limbo Land

Yeah, for me it is more comforting to have a "NAME" for things. I am a research and physiological psychology nut by nature and so a "name" gives me something to grasp onto and understand! If they offer me the option of getting tested (even if it is a LP) i would rather Know and get treatment rather than not know and have this monster continue to wreck havic on my body. I just 4 short years ago used to be involved in 7 different casual sports. Now walking across the room w/o falling is a blessing. It is hard to be in my body b/c it is painful and the disease for me is running so fast with sometimes only a few good HOURS in a day and that is a "GOOD DAY" most of the days are spent in agony and wondering if it would end and I'm only 24 years old. It hardly seems fair that this is happening to me. I have dreams and i have goals and i am having a horrible time trying to get my body on board with the plan of action that i want for my life. I have had to put off grad school for 2 years b/c of this and it only gets worse each day!

I wish it would go away but maybe this is the way that God is going to use me in this life to help others! I mean, if my life is shortened by this (i mean actually i die younger than expected) regarudless of how early i become unable to do things that i used to do. then maybe this is my ministry.

Ok enough with the positive. It is hard and there is no two ways about it. i forget sometimes that this forum is not the place where i have to "be strong" i just have to "BE ME"!!! THAT IS HARD at times! Thanks to all who have and who will reply to this post! It is helping me so much to know that others out there care!
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A Good friend is one who knows where you have been, accepts you for what you are, and encourages you to grow! ~ Anonymous
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If you were happy everyday of your life you wouldn't be a human being, you'd be a gameshow host! ~ Gabriel Heatter
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In the book of life, the answers aren't in the back. ~ Charlie Brown
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When life gives you a ton of lemons, go grab some sugar! It makes the lemonade taste better! - Rachael
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Old 03-07-2008, 10:27 AM #6
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My current response to those who think it could be an emotional response (not psyc ward by any means) is this:

We let them do MRI's, LP's, blood work...all kinds of studies. Why not let a Therapist check out your emotions? What is wrong with checking this possibility? Are we more upset about the possibility that it's emotional baggage than a disease that no one wants?

I believe we owe it to oursevles and our families to check out every possibility. If its not a "Conversion Disorder" (look that up) then you will be 'negative' there, like the other tests. It's as simple as that and one can report to the non-believers in our lives that no, it's not that either!

Therapy can help you learn to deal with whats on the plate too and give you some peace so you are not so distraught over the 'what is it?' thing that keeps one in limbo land.

For the record, I chose to do just that, and to date, my Therapist doesn't think that at all. We are working on other issues, but he has no reason to believe it's a Conversion Disorder...and that is a relief!


Welcome to the board

PS: What are your sx?
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Old 03-07-2008, 11:30 AM #7
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Hey you got a good point. I looked it up. Could be either one I don't know see this thread for the list of sx (will be a long list b/c this is the one i'm working on for the neruo app nxt week).
i grew up in a very stressful home life and around the time the sx started I was being terrorized by an alcholoic stepdad. soooooo you could be on to something there! I think when i go to the doctor next I'm gonna ask about that. If it is that, i'd rather it be that than MS. we shall see!
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Old 03-07-2008, 11:40 AM #8
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Confused curious if anyone can relate to this? my sx

The weird Symptoms: I'm putting this out there b/c I'm wondering if any one else can relate to this kind of thing.

• At age 16 was sitting in a dark classroom in AP biology class and I was just taking notes like I normally did. My head and eyes and the line between the brain and eyes felt like someone had squeezed and poked pulled all at the same time. I say the line between my brain and the eyes b/c that is what it felt like (I know now it was probably the optic nerve) but back then all I knew is that line was on fire and the entire length felt like it was in a vice being crushed. Blinking and rubbing and getting in absolute (or as close as I could come by putting my palms over my eyes) darkness did nothing to relieve the severe pain. In addition to the pain i saw “light” even though the room I knew was dark – we were looking at transparencies on the overhead and I was on the front row but it wasn’t the transparency machine light I saw it was more like the flash bulb of a camera and it faded and blinked on and off in both eyes and it happened weather my eyes were closed or open (from what I remember). When the “light” cleared I had double and blurry vision and it got so bad that my teacher had to provide me with the notes from her lectures from that point on (it was the beginning of the second semester of the college course of AP biology) b/c even she saw that I couldn’t see the board though I was only 3 feet, no i was less than 3 feet from it! That was the first experience with what ever this thing is. And it still scares me to think about it b/c it was the start of the eye problems and I have had several other “attacks” like that during college. I was a junior in HS when this happened. I had no formal accommodations in high school and was not in special education (just the opposite I was in advanced placement classes – but ALL my teachers eventually made accommodations for me like giving me a copy of THEIR lecture notes or having a notetaker for me b/c they could see my grades drop suddenly after this first attack. I went from making A’s to making C’s and even F’s on somethings. It didn’t take them long to figure out that something had changed, we had no idea what, but something had definitely changed! Usually by the first F on a quiz or major test they were coming back to me and saying what happened b/c I NEVER did that before this attack. But from that day on my life changed b/c my vision has NEVER been entirely right since that time and each attack seems to have some sort of cumulative effect on degrading my ability to control my eyes and see w/o doubling. I am constantly now straining my eyes to not see double after the eye surgery and then there are times when I just can’t compensate for it any more and I get unrelenting double vision and almost total loss of muscular control of my eyes.

• Sudden and painful cramping at night in my legs (spasms?) with no physical activity strenuous the previous day that could explain it. Ultimately relieved by letting the cramp run its course with gentle stretching afterwards. Have had this for about 2 or 3 years.

• Tingling sensation down my arms (even the arm on top if laying on side when curled up and all comfy and asleep. Intermittent – started about 3 months ago)

• Eyes closing involuntarily (dark? Makes it better)

• Extreme sensitivity to heat aprox. 80 degrees and above (creates almost instant muscle weakness even if previously strong – was a HUGE problem where I worked in food service when I was in the kitchen environments of commercial foodservice next to major heat sources.)

• Double vision (transient)

• Muscle weakness (transient – a day to a couple of days) coupled with severe balance issues during attacks and general unsteadiness.

• Balance issues (transient see above)

• I love the cold to a degree. When I’m having an attack. I used to go into the walk in cooler at work in food service in a short sleeve shirt and roll up my pants legs to get cool and stay there for like 30 min (or as long as I could beg my way from management to allow me to stay) right in between two powerful fans that kept the cooler just above freezing. I would remain stronger and till I warmed back up. Then I’d “beg” for another round about 45 min to 2 hours later depending on if I was perspiring or not when I went into the cooler.

• When on the Mestinon I always had some muscle weakness. But then, and recently more frequently, I would also have what I called “breakthroughs” where the weakness was REALLY BAD and it was pretty much debilitating for that day(s) of the “breakthrough” weakness. The flare ups would be unexpected and sometimes even when things were going well they would happen. I have been having these intermittent flare ups since age 16 (since the day that I had my first eye pain coupled with double blurry vision). The attacks continued while being treated with the mestinon. (note mestinon is a drug therapy for Myasthenia Gravis a disease that was finally definitively ruled OUT 2 days ago but the sx were similar at the time to MG and had not progressed to where they are now and thus i was placed on the mestinon).
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If you were happy everyday of your life you wouldn't be a human being, you'd be a gameshow host! ~ Gabriel Heatter
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In the book of life, the answers aren't in the back. ~ Charlie Brown
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When life gives you a ton of lemons, go grab some sugar! It makes the lemonade taste better! - Rachael
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Old 03-07-2008, 11:52 AM #9
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Greenjeans:

There is nothing wrong with a good therapist. I spent years in therapy, on and off all kinds of meds and even spent time on psych wards. But that was for depression.

However it was necessary. It was my last psychiatrist five years ago who told my PCP that the problems were physical, not just mental. My PCP thinks it's mostly mental with occasional neurological evidence thrown in. But he is just a PCP who has not made any attempt to pursue continuing education, nor does he do much research. He isn't interested in mystery patients, all he cares about is BP and weight and cholesterol.

So - like bobcatrules I work around him.

Sometimes it's the only way. Even psych patients get sick. I often say I may be crazy, but I'm not stupid.
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Old 03-07-2008, 12:09 PM #10
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Bobcat,
I am not a doctor, but what you posted is very similar to what many here describe. Now that we know what you feel, what tests have been run and what were the results? I ask this so we can provide some (uneducated) opinions that may help you feel better

The only test that showed anything for me was an MRI with a 2 lesions, but I have a history of sx since 1999.

Glad you found us
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