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

[Lulu54]

I second PD's message.  You really do have to stick around here now so we can follow your activities and health.  We love your contributions and your positive attitude despite all of this going on with you.

I don't know a whole lot about CFS and sometimes even think it is an easy out dx from doctors who can't figure out what it is really going on.  I hope you can find a specialist who understands it more - perhaps one of the university teaching hospitals?  Or a Clinic with a big name?

I'm so sorry you still don't have answers but celebrate with you that this expert is positive you don't have MS.  That's a good start.

see you around, OK?
hugs,
Laura
  

[PastorDan]

Lisa, I am sorry you don't have a solid answer yet, but I can tell you from my past experience that this forum is here for you under any circumstances.

You have been a significant contributor here, and there's nothing that says you can't continue to serve that purpose.  It's also simply fair that you let us hear what you learn beyond this point.

Meanwhile, I am confident that others here will join me in praying that you get relief for today and hope for the future.