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

[HVAC]

I am so sorry.

Alex

[wonko]

Dear Lisa,

Your story is very relatable.  While everyone's experience is unique, I went through a difficult time in 2008, when after about a dozen doctors I had no definitive diagnosis or direction from mainstream medicine.  I actually had a doctor tell me to go home and pray, which may be good spiritual advice but was a let-down in terms of Western medicine.

I don't know your background or all of your symptoms, but I can glean from this post that you have, at least, paresthesias, balance issues, and fatigue, but not enough clinical evidence that MS is the cause.  That is very similar to where I was in 2008.

There is a lot of confusion and misinformation surrounding it, but have you considered Lyme disease?  The doctor that finally listened to my health concerns what an internal medicine physician specializing in chronic fatigue and fibromyalgia.  He later became a Lyme doctor, because he learned with time that many people labeled as CFS and/or fibro actually have chronic Lyme, a treatable condition.

I'll go out on a limb and suppose that you are 100% certain that you do not/can not have Lyme.  If that is the case, then we really do have a lot in common, because I was also certain that chronic Lyme was a made-up disease, and that certainly if I did have Lyme then I would recall a tick bite or I would have tested positive for it.

Despite my skepticism, I had exhausted all other options, and no other doctor was offering a diagnosis of any kind, let alone treatment, so I decided to undergo antibiotics for Lyme.  Mind you, at the time I started treatment, I had an abnormal MRI (8 lesions at age 28), constant paresthesias, eye pain and "flashing lights" when I moved my eyes, heat intolerance, relentless fatigue, and more than I can recall or care to write.  And my symptoms came/went in a relapse/remit pattern.  I was weak as a kitten, was barely holding on to my job (was reduced to part time and using up my leave), and was in constant discomfort if not pain.


To wrap up my story that is becoming longer than I planned:  It took a long time, but I responded well to treatment and though I'm not cured completely of all symptoms, I am much much better and back to living life.

If a skeptic like me can look into Lyme, and if a cure is possible, I hope that will help you decide to at least think about it.

Some resources that may interest you:  THere is a film that is on Netflix and other stream sites (and probably also YouTube) called "Under Our Skin."  There is also an awesome book "Cure Unknown" that is ~$10 for the ebook on amazon, by P Weintraub.  She is a scientific writer who went through the same debacle, so the book as a beautiful balance of science, history of Lyme, and personal experience.  It was not only her but her entire family who was sick.

There is also a Lyme forum on MedHelp:
http://www.medhelp.org/forums/Lyme-Disease/show/148

And though I don't check this forum often, you can feel free to PM me any questions you have.  If you do decide to look into Lyme disease, it is very easy to become overwhelmed and frustrated by the consenting opinions in the medical community and some of the more "out there" patient forums.  I know in my case that was a big factor in me dismissing Lyme for as long as I did.

However you decide to pursue your health, I hope you find answers and relief.

[LisaJF]

I can not thank you all enough for your heartfelt responses and support.  You have no idea how this impacts my strength when I find that mine alone isn't good enough at this time.

There is no other choice but to carry on and trudge through the ups and downs of finding a doctor who will actually listen, display some form of empathy (not asking for too much am I?) and help me get to the bottom of this.

The only thing about CFS literature, no where does it state about paresthesias or neuropathy or balance and coordination issues.  I just don't understand how I got dismissed so easily based on my LP being negative for 0-bands.

I am well aware that 90% of people have marginally elevated protein, 0-bands and increase synthesis rate displaying a break in the blood brain barrier, but I have a hard time accepting it because the first LP displayed an increase in my IgG synthesis rate.  Something was going on.  Whether post viral syndrome (had mono twice) caused it, I have no idea.

Again, I feel like I was spun around in circles, blinded and pushed forward not knowing which way to go.

I am at a loss.

This is where I miss Mary (twopack) where she would guide, support, listen, care and give reaffirmation of what I've been through.  

I wish someone could tell me what to do now, for I do not have an answer at this time.

Thank you again.

Lisa

[Evalucia]

Lisa I am so sorry you are still in limbo.  Im sure going back to the drawing board over and over again is no fun.  I pray for answers for you and also for strength so that you find it easier to cope.  I am a newby here, and your emails have kept me from banging my head against the wall, you don't know how much I appreciate that.  

[Corriel]

Oh Lisa, I am sorry that you don't have any answers. I cannot begine to imagine what you are going through but I am so happy that you do not have MS.

Even newbies such as myself know and cherish your presence here so I hope you will stay with us. We care about you and would love to be updated on your progress.

Keeping you in my thoughts and prayers for answers to come your way soon.

Hugs,
Corrie

[kwarendorf]

I can only imagine how frustrated your feel. Having cra*py days where you can barely move is bad enough when you know why you're having a cra*py day is one thing. Having endless cra*py days with no one able to tell you why is another!

Keep plugging away at it!

Kyle