Limbo Stinks!

By Hollyk Friday, September 03, 2010

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Hello everyone! I hope that today finds everyone doing as well as possible! I have an upcoming Optic Neurology appointment on Tuesday. I haven't seen my doctor in almost a year. (He went on hiatus for a few months.) He is the doctor who diagnosed my Horner's Syndrome and that I have demyelination. Anyway, I am a little apprehensive; living in constant limbo has worn me out.

While I recognize that every person has their own experience; those of us stuck in limbo, I feel, have an added burden. Always having to "prove" ourselves; even family members can be insensative or hurtful. At least with a definitive diagnosis the doctors are confirming and "affirming" that there is a problem. Limbolander's however are left in a vortex of unanswered questions; we live in a temporary mode.

I've found some piece in accepting my partial diagnosis. Over the past year I've developed secondary complications that were a direct result of the demyelination and what a few of my physicians call MS (albeit Probable MS). Most profoundly the Horner's Syndrome which is a rare disorder and have very few causes for appearing acutely.

Seeing the lesions does not guarantee a diagnosis either. The big "Stink" however is that just like our diagnosed friends; we still suffer from our symptoms. I understand that it is a hard disease to diagnose; that it is more of a process of elimination of other diseases that brings a lot of patience their answers. But when they've tested, evaluated and found nothing else...it is not better to treat the patient as if they do than don't?

MS treatments are not to be desired; to be sure. No one wants MS! But when your symptoms match in enough ways and as many as the mimickers have been ruled out as possible...it seems cruel not to treat the patient.

Time has gone by and things have happened that I didn't foresee; but, I did find some peace in "letting go" of my intense pursuit of a confirmed diagnosis. At the very least, it has lessened my stress; which is always a good thing. I have found that just living my life the way I would with or without diagnosis is the best place to be in. Only when I have to go to the doctors do I remember that I am in Limbo.

Laugh with me!

Comments (11) | Add comment

Suz

9/ 6/10 9:44am

Hi Holly - just wanted to say I hear you loud and clear. You put it really well what it feels like to be in this in between place. We know there's something wrong, the doctors can SEE that there is somethings wrong (through MRI's, neuro tests etc.) and yet we have no answer as to what is happening and why. I too dread going to doctor at this point beacuase of the feelings it stirs up.

But I'll hope and pray that someone will give you the answer to why you feel the way you feel and do what they can to help you. Good luck tomorrow...

Suz

Sheila

9/ 9/10 10:38am

To finalize my diagnosis they did a lumber puncture. Apparently this is the definitive test for MS. One has to lie very still and they extract by syringe some spinal fluid. Afterwards, if you don't rest, you'll get a crashing headache.

Hollyk

9/ 9/10 10:47am

I've gotten that headache...it is the worst feeling in the world! Did you get your diagnosis?

Sheila

9/ 9/10 10:47am

I was diagnosed a long time ago using this method.

Dan

9/ 9/10 11:03am

I really hate to say this but I always feel a small blessing when I find others going through the same thing as me. The reason I hate to say it is because I don't want any one to think I am glad someone else is suffering too. You know the old misery loves company thing? People who are not trying to get a diagnosis of a medical issue really have no clue what we go through. I sometimes think that the not knowing issue can be worse than the medical issue is psychologically speaking of course. So with that being said....... Thank you for your post. I feel a little comfort from it.

Hollyk

9/ 9/10 1:34pm

Thank you for responding; I do understand what you mean. It is a very lonely place to be when you are ill; but it helps your spirits tremendously when you have someone who understands. I do not think being happy about that means anyone would wish illness on themselves or others; it just means we no longer feel alone.

Being ill, even when you have a loving family, can be a very alienating experience. It is much harder when your loved ones do not understand or even care to understand. Now, add all of this on top of doctors who can't tell you a definite answer and stick you in limbo...that is like being trapped in a pit that you can not escape.

I am like you, I have found comfort and hope in others here who are in limbo, who've finally been diagnosed and those who've been for a long time. I am just so grateful to find a place such as this where we can gather.

I am very grateful to all of my friends here; it helps so much to have you all!

Dan

9/ 9/10 1:42pm

My wife and kids are great! They really try to help me with everything even though I don't usually ask for it. They never want to see me struggling but sometimes I don't mind. Sometimes I make myself struggle with things because.....I am alive... I can struggle and it won't kill me.....really, it won't.... They don't understand that though. It is really tough for me because my illness can't be seen so I just know that everyone in the world thinks I am just a lazy faker. Even though I am 48 years old and have had a job every day of my adult life (thank God) I still feel that way. Oh too be young again!

Hollyk

9/ 9/10 1:49pm

That is wonderful Dan! My children are wonderful; my husband, not so much. He is a nurse and won't believe it until the doctors say it out right. He expects me to be as I was...running myself into the ground being super woman. But, thanks to God, my children are wonderful. I am like you; it is ok to struggle as it is human to do so. I am not looking for sympathy; but for ideas of how to manage to live with my disabilities. I push myself to the point I know I am able to without causing myself to become more disabled. Some days though, (I know what you mean about being labeled lazy) it is all I can do to sit on the couch. I know that my body is trying to rejuvenate itself; to build strength.

Dan

9/ 9/10 2:00pm

I just read your post about your doctor app. I Know that eventually God will lead you to the doctor and the dx that you need. That's what I keep telling myself. I have 3 children and 1 Grandson. My older 2 are 24 and 23. My youngest is really funny. If you try to tell her that she needs to get her chores done, she will give you one of those " I will " statements. If she sees me trying to do something she "thinks I shouldn't be doing, she will run to me as fast as she can to do it for me. I try to live everyday with the attitude that if it doesn't kill me it makes me stronger. Having a great family really helps too!

Dan

9/ 9/10 2:00pm

Oh and my youngest is 13

Hollyk

9/ 9/10 1:43pm

Update from my doctors appointment on Tuesday...my Optic Neurologist confirmed again the demyelination; but still will not call it MS. He approved of my finding another Neurologist who specializes in MS. I also need to find an independent doctor to look at my MRI's which appear to show 2 spinal lesions. If they confirm they are lesions; then I will get my diagnosis.

I am not going to think about it too much however, I have been here too many times before; hopeful and trusting that I would finally have my answers...only to be told that they didn't have any.

I will remain patient however; no answer, diagnosis, or lack there of is going to change my symptoms; it is not going to change what I am going to do for now.

Thank you for your prayers and kindness!

Limbo Stinks!

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