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??? :confused:
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??? :confused: 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! :eek: 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 :Sinking: to Limbo Land? :Sick: :Sigh: :Sob: :Bang-Head:

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. :wink: 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! :D )
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 :Head-Spin: crazy i seem to be. :Scratch-Head:

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!!!! :mf_swordfight: 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" :Clever: discourses in writing, via email) didn't always take to kindly to being bombarded but it is nice to be appreciated. :hug:

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

:circlelove: Sincerely, Rachael (bobcatsrule)

QUOTE put in point form:


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. :mad:

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. :hug:

Cherie

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. :eek: 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! :girl(sad):

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! :grouphug:

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 :D

PS: What are your sx?

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!

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).

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. :wink:

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 :D

Well said Cricket!! In case you missed it, because I could not get a dx, I chose on my own to investigate this possibility....for me and my family....so that I could put this possibility to rest. I was scared that the therapist would say "Yup, you did this to yourself", but he didn't. I'm working on other issues as in life, we all have things we could talk out and feel better for. It is helping my mind...and I don't feel anxity or depression....hell, who wouldn't get depressed after what we go through? I will never have to wonder now, and I can tell that to any doc that would suggest it in the future :) (FTR: My Neuro just said we are going to wait and see....he never suggeted it was emotional)

Thanks!! :hug:

Just want to share that not many on this board say this...but I have this too! In 2001 when I saw my first Neuro/Optho...he susupected Blephrospasms and we tried to treat it. When it failed, that's when he went to the MS. I appreciated him looking at all possibilities. This doc to this day, calls me a 'probable MS patient'.

For me, my eyes squint and blink, forced eye closure, blurry vision, double vision and ghosting. To this day, these symptoms have never left. I've learned to live with it, so I don't mention it much. I guess when you've lived with a sx for many years it becomes a part of who you are.

This is a very visable sx to the outside world. It has dropped my self esteem and my confidence level. When I'm talking to people who don't know me, I feel so isolated and like a true freak! Anyway....just wanted to share that.

I don't understand this one, You eyes close on there own when you try to keep them open? :confused:

A simple answer...Yes! When it was at its worst, I sat there watching TV,etc, with my eyes closed, which was like a forced blindness. I could open them, but then they would shut again. This was my first attack. Now it's mostly squinting and uncontrolled blinking, with blurry vision. I also have sharp stabbing pain behind my eyes, much more like what others here describe.

Again, not one I discuss much.

Wow, thats awful. I thought I had it bad with the dropping eye lid and twitching and than my left eye (all of this is mostly my left eye) doesn't like to open all the time (mostly when I'm tired).

good news for you greenjeans! I have some info that i think will be educational for everyone on the forum. i too was just dx with blethrospasms and like you my neuro wants to try botox injections in the eyelids :eek: which i'm not crazy about and i had a feeling that b/c of the other sx that the botox might actually do more harm than good. (which i just got permission to send an email directly to my neruo and when i told the scretary what was going on she immediately gave me his email b/c she felt there was something to what i was saying. I was flat out blunt and hoenst with the neruo in my documentation and didn't hold back anything from him about the symptoms. i included lots of detailed examples!) yeah i'm having those wonderful eyelids closure problem right now really severely and it is causing severe doubble vision and blurry visoin. oh yeah and eye pain like crazy. good think i can type with my eyes closed and that i type so fast so as to make the most of the times that i can briefly see! for anyone who is interested in this rare disorder that goes hand in hand with MS please see the link that i have attached to this message. it is a pdf file that i created on myc omputer from the most authoritative sorce on blethrospasms dr. Janorvik from TX (i think). Green jeans you and i are NOT alone. there is a network of people out there that i frequently talk to called MS friends and there is a lady in TX who has the same problem we do. Thanks for being bold enough to share it! BTW knowledge is power and ignorance is fear. keep your chin up greenjeans there is hope out there! the article that i am attaching says nothing of MS but there are other sources that i have researched that do mention MS as a possible cause. green jeans have your neruo check for leasions in the basil ganglion/celerbellar/brainstemarea (he will know what i am talking about) that can cause this. :circlelove: well i'm gonna go and sucumb to the closed eyes and freak some people out and make them think i'm sleeping. that is if there was anyone around that i could psyc out liek that. :grouphug: be ye glad btw greenjeans that this only happens when you have attacks! It happens to me EVERYDAY 24/7 and the mornings are the worst! i think u will find this artilce very intersesting. Hee hee hee typed this in 5 mintues flat!

I did the botox injections for about 6-8 months back in 01/02. It did not help at all. Only time has made it better. Later, my MIL got blephrospasms, and they are nothing like what I have...and the botox worked for her. Usually, Blephro's are only in one eye. Mine sx are in both. I don't have the 'twitching' that is characteristic of blephro's...I have forced shutting, blinking and squinting. Definately nerve related.

I have had several MRI's and I have lesions, but not where you inquire. I have never heard that blephrospams are associated to MS, but I'll check your link out...

My Optho/Neuro I saw again last year, and he took that dx away and has me listed as possible MS since I also have vertigo, numbness and cognitive issues (different attacks thru the last 8 years) which are not related to the blephro's. I think he's on to something...but MS has a way of hiding out for some people.


PS: Please list all the tests you've done and the result. MRI? LP? BLOOD? OTHERS?

The first link you posted did list MS as a dx considered sx related to blephrospasms. (Did I say that right? LOL)

Very interesting...I did all that research years ago, but this is the first I've seen about Blephrospasms and dystonias related to MS. Very interesting. Thanks.

My MIL has that twitching, so I've seen it first hand...but mine is more of a control issues, the best I can describe it. The more tired I am, or if under a stressful situation like talking to a boss about something, my 'tic' as I call it, gets worse.

Again, good article...thanks!

PS: I have to recommend that you break up your paragraphs more often, many here including myself, have difficulty reading long paragraphs...Many here will appreciate it :D

Sorry if I was not clear. This is all day, every day since 1999 for me too. Sometimes an attack can do enough damage to give you a new normal. My normal is as I described, accept I can now keep my eyes open as a general rule. I still get the forced closeings now and again...but I blink and squint all day everyday :(:rolleyes::D VERY ANNOYING!

well Ms. Jeans i wish i could expl. all the tests i've had to you. However, all i know i is i've had a lot of bloodwork (no idea what they were testing for - all came back normal) and none of the standard tests for MS. (I had a "normal" MRI about 6 years ago) and since that time it has been all down hill from there. that Normal MRI was from the time when i could play sports and hopping up to walk across a room was no biggie! Now that is not the case (with the walking across a room being no big deal). i imagine that within the comming days I shall have wonderful things done like LPs and MRIs and stuff like that. :rolleyes: I probably don't have the kind of blethrospasms either that your MIL had b/c mine is much like yours. the eyes just slam shut and don't open. it isn't primary benign blethrospasms anyway that you and I probably have. we most likely have the "secondary" blethrospasms which is the type that has a cause (ie: lesions in some areas of the brain that affect eyelid opening). that is the only type that has the identifiable cause. I'm really glad that I'm talking to you though b/c they were going to try botox on tuesday and I think I'm going to refuse and ask for further testing first before I allow them to do that. I was going to resist anyway b/c I had my suspicions about what they were saying that there was more to it than just simple little eyelid closure problem.

the good news is i got my neuro's attn. I called his office today and mentioned a word doc to the receptionist that i have been using to write down the "wierdies" as i call them. the sx that make no sense at all but that are very real! Like the "attacks" of nerve pain and things like that (refer to the description of the attack at 16 to see what i mean by Nerve pain). I had previously never shared those things with my neuro but i have now and i have a feeling that there will be more tests coming down the pike but that the new info that i just brushed off as "normal" or "slightly odd" or "top secret" then that will help him make the right dx.

when i described them to her in breif she immediately gave me his email address and encouraged me to share that doc directly with him TODAY. I had called her b/c i was wondering if the info might be relevant or if i should continue to brush it off. (typing with eyes closed is such a wonderufl thing!) she felt that it was legit. so here i am, going under the limbo bar hoping to cross out of limbo land for good and into the land of the appropriate treatments.

btw i have had several x rays of lungs and a cat scan or two but nothing w/ contrast to help them see much of anything. all major anatomical features appear normal. now we get into the land of little things that you can't detect with the necked eye. sounds like more needles :Sob: to me. GREEEEEAAAAT! :icon_rolleyes: :thud:

sure BGB i will try to break it up a bit. this has been a venting space for me today and my eyes are now paying for it. but i will keep you in mind. cheers.

That last post was broken up better, but more more more ;)

What I can offer about the MRI being clear for you is my experience.

My first MRI in 2001 was clear too. Now I have two lesions (2007). My LP came back clear, my blood was all normal and I had a VEP, also normal.

Very hard to get a dx when it won't show up! Have you seen an Opthomologist Neruologist? They are specifially for the eyes. These doctors can be key in discovering ON sx and a regular neuro or reg optho may not have the skills needed to discover this stuff.

He suspected MS in 2001, but b/c my MRI was clear then, he couldn't dx me. Now in 2007, he says probable MS. My regular Neuro says Probable MS too.

Problem for me is when you have sx and no dx, THEN you think you are crazy...thus my suggestion earlier today.

How long have your eyes been 'under attack'? Maybe in the coming years it will improve like mine did...oh...but I did get accupunture for a year in 2002 that made a HUGE difference...and been steady like I am now all these years.

I've never met anyone anywhere (even on a board) that has this sx as I describe it....thanks for sharing your story.

Well, Bob!

Welcome to the boards here!

And you and I are practically neighbors! (compared to everyone else here!)

I was curious if we had the same neuro, but when you said yours emailed, I knew my neuro didn't!! :)

Bob, most of us have been in limbo for a period of time. You just need to do what you are....keep researching, read MS books.

But Bob, for your sake, I hope that whatever you have is curable.

Peace.

The Limbo Lost... This Thread Adapted For Ez Reading
 

DEAR READERS AND NEW FRIENDS. I HAVE LISTENED TO WHAT YOU ARE SAYING AND I HAVE ADAPTED ALL MY RELEVANT POSTS TO LARGE PRINT PDF FILES THAT CAN BE READ IN A NON-BLOCK FORMAT! :grouphug:

I HAVE INCLUDED AS MANY ATTACHMENTS TO THIS POST AS THE FORUM WILL ALLOW. THIS IS A TEMPORARY FIX TO A PROBLEM THAT WILL BE REMEDIED IN FUTURE POSTS.

THANKS FOR THE SUPPORT AND LOVE! :circlelove:
SINCERELY RACHAEL (BOBCATSRULE) :wink:

The LIMBO LOST... THIS THREAD ADAPTED FOR EZ READING
 

HI All readers and friends,

This is the last post that i made that wasn't able to be attached to the origional post of ez reading.

thanks to all!

Rachael

Industrious, isn't she!!!??? ;)