THE JOURNEY THROUGH LIMBO LAND

[Audrey_M]

I JOINED THIS FORUM ABOUT 2 MONTHS AGO. I AM IN THE RANKS OF MANY OF YOU WHO ARE IN LIMBO LAND. IT’S A HARD PLACE TO BE, KNOWING THAT ONE IS NOT A HYPOCHONDRIAC AND HAVING TO DEAL WITH SYMPTOMS THAT COME AND GO, YET HAVE A SIGNIFICANT IMPACT ON ONE’S BODY AND LIFE.

IT ALL TAKES A TREMENDOUS PHYSICAL, EMOTIONAL AND FINANCIAL TOLL. FIRST, WE ARE CONCERNED ABOUT WHAT IS GOING ON WITH OUR BODIES AND WHY CAN’T DOCTORS FIGURE IT OUT? FOR SOME OF US, THE SYMPTOMS ARE NOT ONLY DEBILITATING, BUT CAN LEAD TO DEPRESSION, ANXIETY AND PANIC ATTACKS. FAMILY MEMBERS AND COWORKERS NOTICE CHANGES IN US. WE CAN’T ALWAYS DO THE THINGS WE WANT TO DO, ESPECIALLY WHEN WE GET HIT WITH THOSE BAD SPELLS.

WE WORRY ABOUT BEING ABLE TO HOLD ONTO OUR JOBS WHEN WE HAVE TO CALL IN SICK OR HAVE TOO MANY DOCTORS’ APPOINTMENTS. AND THOSE DOCTORS’ APPOINTMENTS AND TESTS HAVE US SITTING ON PINS AND NEEDLES, HOPING THAT THIS TIME; WE’RE IN THE HANDS OF COMPETENT PROFESSIONALS WHO WILL FINALLY TELL US WHAT IS GOING ON WITH OUR BODIES SO THAT WE CAN COME TO TERMS WITH A DIAGNOSIS AND MENTALLY PREPARE OURSELVES TO MOVE ON WITH LIFE.

THIS FORUM HAS BEEN VERY HELPFUL TO ME IN SO MANY WAYS. IT HAS BEEN EDUCATIONAL AND A GREAT SOURCE OF SUPPORT, SEEING OTHERS TRYING TO GRAPPLE WITH A SIMILAR SITUATION. MANY OF MY SYMPTOMS ARE SUGGESTIVE OF MS AND THE LESIONS ON MY BRAIN ARE NOT TYPICAL FOR SOMEONE OF MY AGE. WHILE I AM KEEPING AN OPEN MIND IN TERMS OF A DIFFERENTIAL DIAGNOSIS, THIS FORUM HAS THE MOST INFORMATION IN TERMS OF BOTH SYMPTOMS, TESTS AND DIAGNOSIS.

MY JOURNEY STARTED ALMOST 8 YEARS AGO WITH WHAT I LIKE TO CALL THE “UNBEARABLE LIGHTNESS OF BEING”, WHICH IS LIGHTHEADEDNESS, FEELING DIZZY, BRAIN FOG AND HAVING PROBLEMS WITH VISION. I WAS TRYING TO MAKE A 60 MILE DRIVE HOME ON THE HIGHWAY AND IT TOOK ME AN HOUR TO DRIVE MAYBE 15 MILES. I THEN CALLED FAMILY TO DRIVE ME HOME. I WAS AFRAID OF GETTING INTO AN ACCIDENT AND KILLING OTHERS AND/OR MYSELF.

LESS THAN A MONTH LATER THIS RECURRED WITH NEW SYMPTOMS APPEARED. IS IT A NORMAL PART OF AGING OR SOMETHING ELSE? HOW DOES ONE KNOW WHETHER OR NOT TO CALL A DOCTOR? I STILL LIVE WITH THIS TODAY.

THAT’S ONE OF THE THINGS THAT I SHOULD HAVE ASKED THE NEW NEURO I SAW THIS WEEK. I’VE HAD A RATHER COMPREHENSIVE PANEL OF BLOOD TESTS ORDERED. ON TUESDAY, I’M HAVING AN LP (THANKS FOR LETTING ME KNOW SERUM NEEDS TO BE INCLUDED) WITH THREE SPECIFIC TESTS ORDERED. THE WEEK AFTER COMES AN MRI OF BOTH MY C AND T SPINE. ALSO A VISIT WITH THE EYE DOCTOR AND A FOLLOW UP APPOINTMENT WITH THE NEURO AT THE END OF THE MONTH. I’M DETERMINED TO SEE IT THROUGH THIS TIME, BECAUSE WHAT IS GOING ON IS NOT NORMAL.

SO TO ALL MY COMPATRIOTS IN LIMBO LAND, STAY STRONG IN SPIRIT AND BE YOUR OWN BEST ADVOCATE. FOR ALL OF US, I HOPE THAT WE FIND OUR ANSWERS SOON, WHATEVER THEY MIGHT BE, SO THAT WE CAN ACCEPT THE CHANGES IN OUR BODIES AND MOVE ON WITH OUR LIVES.

AUDREY

[MsWobbles]

Oh, I thought you were therapeutically expressing your own rightful feelings of frustration about your Limboland experiences.  It's certainly okay to do that here - 'cause we sure understand, having had similar experiences.

Agree with your counsel to "be your own best advocate" even though doing so caused me to be dropped by my last primary physician (he didn't like my being so involved in my own medical research).  I had always thought he was a good doctor, but now
I have found an even better one!

Regards,

WAF  

[Audrey_M]

Your last sentence "You're not alone!" was my whole point in writing this post to let others know that they are not alone in their journey. I was hoping to give people the therapeutic opportunity to share some of their experiences and feelings.

Thanks to others for the kind words. I will keep you posted on how things progress.

[MsWobbles]

Hey, Audrey,

I'm there with you in Limboland.  Been there for 5+ years.  Had every test known to medicine at least once.  Had the stinking lumbar puncture (never again!). Ruled out for everything.  Been through an incredible number of MDs.  Seen much falsification in official neuro physical exam documentation. They make more money selling repeated office visits and diagnostic tests than diagnosing.  

Meanwhile, we suffer essentially alone (with the loving and wonderful support of this forum), but without a local support group we can join and not knowing if maybe there is some intervention, some medication we should be on to arrest the progress of our disease and prevent future disability. I guess that is what hurts the most.

I am reminded of an unfortunate woman who had balance issues etc. escalating in her life and her MDs not arriving at any diagnosis. Because of a serendipitous exchange with her chiropractor's receptionist, she learned about normal pressure hydrocephalus and was able, through her own research, to determine that she, indeed, had it and was able to get it treated (even though her MDs poo-pooed her about it) so that she could get her life back to normal.  Wouldn't we all love to be able to get back to how we used to be????

So don't give up your research.  Also, you might consider going to a highly-rated medical facility outside the country for a different approach and possibly a diagnosis. Choose a country not heavily under US govt. influence.

Good luck!!  You're not alone!!

WAF

[rendean]

I"M SORRY THAT YOU ARE IN LIMBOLAND. I WAS A RESIDENT FOR 4 YEARS BEFORE I FOUND THIS FORUM. THE DIFFERENCE THIS FORUM HAS MADE IS INCREDIBLE. HERE THERE IS ALWAYS SUPPORT AND EXCELLENT INFORMATION.

IT LOOKS LIKE YOU HAVE A GOOD PLAN AND APPOINTMENTS TO HAVE ALL YOUR ISSUES ADDRESSED. I WISH YOU WELL AS THESE APPOINTMENTS ARE MET. PLEASE KEEP US UPDATED ON WHAT IS GOING ON.

WARMLY,
REN

[HVAC]

Limbo is hard. I hope you find an answer.

Alex

[tonyad]

    i am sorry that you are in the "Limbo Land" arena :(
So many of this have been in your same situation and certainly understand how you feel.

    You are so right in your thoughts and the Gammet of emotions that you are going
through....You know your body than anyone and don't ever let someone try and convince you of that otherwise!!!!!

     Are you currently / actively seeing a Neuro at this time?  Have you had the panel of blood work to rule in / out some MS mimics........Lyme Titers, lupus, B-12, thyroid Profile,  and ,many others......?

     Wishing you the best.... and please keep us posted.

take Care,
~Tonya