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It's a thief!

Jan 08, 2016 - 7 comments

And it just keeps taking!

It's taken away my balance, it's taken away strength, it's taken away muscle, it's taken away my energy, it's taken away my appetite, it's taken away my hobby, it's taken away my joy, it's taken away my money, it's taken away my optimism , it's taken from my children, it's taken from my husband, it's taken away my social life, it's taken away my patience, it's taken away my hope, it's taken away my goals,  it's taken away my confidence, it's taken away my laughter, it's taken away 19 months, it takes more and more each day,  it's taken away who I am....and I AM STILL NOT DIAGNOSED!!!  

Frustrated, and exhausted, and hopeless.

This is my if the doctor's would just agree

Mar 29, 2015 - 5 comments

I believe I have MS...I believe the lesions are on my spine and because they have not used the highest strength MRI, they are missing them.

This is what I know which is bringing me  to this conclusion:

1)  I at some point in the past had the Epstein Barr lab results indicate that I had a very high IgG and a low IgM.  True that most of the general population has had the virus, but also true that results such as mine are found in patients with a confirmed diagnosis of MS.

2) I stood up and immediately fell down as a result of lack of feeling/no feeling in my legs which resulted in a sprained ankle.

3)  I  now have a confirmed 25% vestibular deficit of my left side

4) I have hyperreflexia of the left knee

5) I have noticeable atrophy/loss of muscle bulk and tone on my left left (symptomatic leg)

6)  The toes on my left leg flail/spread apart when I lift it or walk...babinski reflex??

7)  My eyelids flutter rapidly when I close my eyes-eyelid myokymia ??  

         True that:  (a) "In most cases, eyelid myokymia is benign, self-limited, and not associated with any disease."
(b)"Rarely, eyelid myokymia may occur as a precursor of.......multiple sclerosis." .  

     If this were just a stand alone phenomenon, I could easily dismiss it...but this is something I NEVER had before the initial fall in May.

8)  I have obvious gait problems

9)  I've had EVERY test run to rule out the mimics...and MS is a disease of that leaves me with???!!!  

10)  The first neuro I saw diagnosed me with MS and wrote an RX for steriods based solely on my history and clinical exam.  Was retracted when MRI's came back "clear".  

Objective evidence, only because there is no way to "prove" all these symptoms I've had over the past 11 months.


1) Extreme fatigue, numbness tingling "awareness" feeling of my left  leg.
2) Buzzing sensations  in my legs twice.
3) legs were "paralyzed" in the middle of the night on 2 separate occasions.  
4) leg feels weak, unstable.
5) numbness/weird feeling in my fingertips/hand
6) went from being very active/athletic  to barely managing 10 minutes on the treadmill at a slow walking pace
7) left eye blurriness
8) left leg "catches" and gets out of sync when I walk
9) say the wrong words a lot, have a hard time finding words
10)  dizzy, dizzy, dizzy and one bout of vertigo in December (have had it a couple of times in the past...thought nothing of it)
11) after walking 10 minutes or any "length of time", my feet start going numb and can't hardly feel that they are there.
12) having a hard time concentrating/brain fog.
13) neck gets really stiff and feels inflamed for no apparent reason.
14)...forgetting, I'm sure I'm forgetting something!

Having just one of these symptoms could just be a blip in life...but added up all together...HAS to mean something!  This is no coincidence!  

I've had most of these symptoms for the good part of the summer into fall and then they appear and disappear at that because of active inflammation?  I'm dealing every day with gait problems and the dizziness/leg problems...permanent nerve damage?

I feel like a switch was flipped back on May 6th, and I haven't felt "well" or "normal" since.    I don't want a diagnosis of MS, I don't want a diagnosis of anything!!  I want my "old" life back!  

I have seen my GP, my Internal Med doctor, an Infectious disease specialist, a functional nutritionist  3 MS specialists, 1 neurologist, a movement disorder specialist, a chiropractor, 3 Physical Therapists (2 for my dizziness and 1 for my gait issues) , a neuro ophthalmologist and a psychologist (who cleared me of "making this up") ...phew!  I joke that I would see a veterinarian at this point!    

I'm not a "head case" as the diagnosis of "functional gait disorder" implies, I am a "body case" and it is betraying me, it is scaring me!    A person doesn't go from being "healthy" May 5th,  to falling down on May 6th and having a downward spiral of diagnostic  "proof" and 11 months of symptoms that were NEVER there before.  Something triggered this, something is going on....I think it is if the doctor's would just agree.  I am not fitting into their "box" because of clear MRI's...but I definitely am in a "box"!  

I am frustrated/exhausted/fearful for myself and my family and angry.   Losing hope that I'll ever get better because no one can tell me what is wrong with me!!