Results of a long journey

[LisaJF]

I feel compelled to inform everyone of my last Dr.s appointment and its conclusion of my long journey in attempting to find what was going on with my health throughout the three long years. A forum, that is comprised of compassionate and supportive people,  I do not think I would of held onto my sanity throughout the ups and downs of the diagnosis process and the symptoms that had debilitated, incapacitated and wreaked havoc on my personal life.

I received a call yesterday by the MS Specialist with the results of my lumbar puncture and everything that I had been going through for years was hanging on a  frail thread of an answer.  Although there was a few out of range values, there were no oligoclonal banding in my CSF or serum.  There was no monoclonal banding of the serum electrophoresis testing.  My MS Specialist concluded that, "MS can be wiped off the plate entirely."  This is a doctor who said, "I'm not impressed with your lesions.  They do not look like MS lesions."

I can't help to say that a big part of me was relieved and did express to the doctor that although I am happy to hear I do not have a progressive demyelinating disease, I am still bereft of the causes of what has been going on with my health from chronic fatigue, paresthesias, pain, balance and coordination issues, blurred vision and sometimes cognitive dysfunction.  

The doctor's comment was to me that I could possibly have chronic fatigue syndrome and that I should look into seeing a specialist in that area.  However, the doctor did state that according to the CDC's diagnostic criteria, that I may not qualify. I asked "who" I could go to or someone the doctor knew to refer me to and there was no helpful answer.  

After I hung up the phone, I cried.  I cried because I am no farther than I was three years ago and the mere fact that I would have to start "ALL OVER" again.   The things I've lost along the way grieved me, yet, somehow I managed to pull myself out of that grief and push forward and tried to live my life as best as I could.

I even contemplated on going back to work by going to get my recertification of my BLS and went to an interview for a position. I submitted my cover letter and resume.  During the time of waiting to hear from the facility that I applied to,  once again I fell into a health crisis that did not allow me to go hopping on the job hunting bandwagon and instead, laid flat on my back or became a couch potato for weeks.  I could barely stand to hold my weight or go up my stairs without crawling 3/4 of the way.

Of course, I googled certified CFS doctors in my area and none to be found.

I'm relieved, yet devastated at the same time.

Thank you all for the years of support, listening and most of all friendship.

Lisa

[immisceo]

Lisa, I've been off the forum for a few days as I was away, but I just want to chime in. I can't imagine the complex emotions accompanying that result. I can only add to the chorus of voices saying you absolutely belong on this forum as long as you feel it is of benefit to you. Thinking of you.

[Lulu54]

Lisa,
I am always amazed when I start rehearing the stories of all my friends here who have been through limbo-hell  and continue on, rather than give up and resign themselves to living with all those symptoms.  I know you wont give up either, but you may need to step back, gather strength and regroup.Then plunge right back in on the search.

I also want to acknowledge how much you miss Mary - her absence here is felt by all of us.

We'll still see you around, right?
hugs,
Laura

[PastorDan]

You know, when I read stories of everyone else's ex-neuros and their supposedly expert judgments, they all sound so similar to mine, among the five (+/-?) I have seen in the past.  Giving number 6 time.  This guy really seems to be listening, so far.  Not only that, but he didn't seem intimidate byd, might've even been appreciative of a patient wwho's do e some homework over the yearz to become informed and conversant in the subject.  6th time's the charm?  I du no.  Maybe it'll take nine but quit is not on my list right now.  Lisa, we continue to appreciate you, and a slew of ithers around here.

[yorkieville]

Lisa,

I like your attitude-whatever is wrong will be diagnosed. My former Neuro told me that I would die, before anyone figured out what was wrong with me.

I didn't give up-I knew the answer was out there. Like you, I knew it wasn't going to be as timely as I wanted.

I feel that you contribute a lot by staying in this "Forum Family". You set an example for everyone living in Limboland, not to give up.

(((HUGS)))
Sheila

[maestro1959]

Lisa, I am terribly sorry for the frustrating position into which you have been thrust.  I do wish you could have an answer for all you are experiencing.

I can not understand why so many MS specialists (and I use that word loosely) place so much weight on the results of a lumbar puncture.  When I was going through the process my LP came back negative, as did my visual evoked thingy.  Between the symptoms I was manifesting and the lesions found on the brain MRI my neurologist made the diagnosis without hesitation.  The "specialist"  I went to told me it was age (52 yrs. old) and that I was 40 pounds overweight.  I went home from that appointment crying and wondering what KoolAid he had drunk.

I said all of that to encourage you to keep your chin up.  Find a doctor with whom you click and can have trust.  Your answer is out there.  Call it, "The Thrill of the Hunt."  I am praying for you to have courage, and take heart.  God has not lost your address.

Beth

[Sailorsong]

Lisa,

  For over a decade I was told by doctors that I had CFS, CFIDS, and a number of other things that I can't remember right now. Like you I also had no o-bands, and some a-typical lesions in my brain. I have been dealing with this since 1988.

IN the end in 2010 I finally got a PPMS DX after I finally got a spine MRI done that showed a lesion there. IMO any doctor that says you have CFS just doesn't know what is wrong and doesn't want to do the work to find out what is wrong.

Dennis