stop me if you’ve heard this one before

i am not really sure if i have ever gotten really into my neurological past.  i may have but apparently i need to work it out some more. it ties in alot to my current state which i will get into later in this post….

in late april of 2012 my dr came in and told me that i needed to quit smoking!  this was for reals and you need to quit now!  he prescribed me chantix, despite knowing that i suffer from depression and anxiety.  it took 8 days until i could feel i was not thinking or acting normal, so i stopped the chantix, but i believe those 8 days did something huge to my neuroprocessing.  in may i started getting what i can only describe as restless leg syndrome.  it was slightly uncomfortable but mostly annoying.  i brought this up to the dr and he put me on a medicine for the restless leg.  this was in june.  we went on a cross country drive in july and by the end of july i had dancing feet, no muscle tone in my face, my cognition was very low: amy would say something to me and i would hear the words but i didn’t know what they were, i had rigidity in my arms and legs, and tremors.  we went to the family dr and he said it’s a psych issue, we went to the psych and he said it’s a physical issue, but he did take me off of abilify (an antipsychotic we aren’t sure why i was on that inhibits the release of dopamine) and put me on a stronger one called latuda.  my symptoms progressed rapidly!  in october my gp sent me to the neurologist in november.  he was certain that this was psuedo-parkinsons caused by the latuda and abilify.  i had stopped the latuda in late sept, so i had my doubts.  my neurologist put me on a parkinsons medicine called amantidine, and within two weeks i was doing so much better.  i had gone from 0 to 80 in months and i was pretty close to body systems shutting down.   by december i was back to normal.

so i was bunbling through my life, as normal, never forgetting how lucky i was to be able to do the things i could do.  in july i hit a brick wall face first!  everything was good then everything was not good.  nothing had changed, no med changes, no lifestyle changes, nothing.  and now we are back on the roller coaster of neurological issues.

this time things are different.  my brain thinks full thoughts, i have a tremendous range of emotions, i am not unattached from everything going on around me.   although there are some symptoms that are present  that were present in the psuedo parkinsons, loss of muscle tone in my face, rigidity in my limbs, weird eye movements, and a wide stance, most of my most troubling issues are relatively new.  i have had dysphasia (trouble swollowing) for at least 5 years, but it is getting worse.  i have dysarthia (inability to articulate words) that can go from speaking slowly to stuttering to incomprehensible jibberish within a couple of hours.  i never know when i am not going to be to talk until i open my mouth and try.  i have peripheral neuropathy the loss of sensation in my extremities.  last year the neuropathy was to my ankles in both legs and it has ascended half way up both legs, although the neuropathy in my hands has not gotten too much worse.  i have gi neuropathy that affects my digestive system.  i also am getting skin infections all the time, sometimes on my legs, alot of the time as a sty.  i tested positive for epstien barre (mononeucleosis) in august, which was pretty severe also.  i had mono before 15 years ago and was hospitalized for a month, so apparently it just reactivated.  i am completely and totally exhausted all the time.  attempting to talk is probably the hardest thing on me.  it feels as though i have weights on my body parts, holding me down.  the vertigo is wicked leaving me feeling like i just stepped off of a whirly twirly roller coaster.  i pass out, i fall down, and i crash out of the blue.

the neurologist was unable to give me a name for this disorder.  we have many more tests to run, but he does assure me i am not insane and i am not making this up, which is the feeling i have gotten from my gp.  i have doubted myself bc the drs just act like this is all impossible and it doesn’t make any sense.  so this morning i had 12 viles of blood drawn for all kinds of tests.  this thurs i have an eeg, mri of my brain, xray of my abdomen, an appointment w my gp, and then i have to go with our youngest son for an interview into a college prep program.  the neurologist put me back on the amantidine bc it worked so well last time.  i also have an emg, a nerve conduction test, scheduled for a week from today.

i am going between being absolutely ok and happy and hopeful to just full blown panic attacks bc of the impending doom.  i am not sure that i will be able to really deal with it until i know for sure what the diagnosis is and the prognosis.  my mind can build things up and tear things down.  i am scared.  not being in control of my body is the biggest fear i have ever had.  and after the psuedo parkinsons, that fear is completely based in a reality not many ppl are able to understand.  the idea that this is a lifelong nervous system issue, especially the idea that it is degenerative getting worse over time, is gut wrenching!

so i do think i am mourning, although i am not sure what for.  i do know i will never ever go back to the person i was before all of this happened to me.  i have seen my friends and family reach down and find the strength to stand beside me despite me not being in control.  i look my fear in the face everyday.  even if all of my symptoms disappear tomorrow, i am forever changed.



  1. jmlol · November 19, 2013

    I can totally understand the mourning. I really hope that something shows in the test, so you have a name to put to your fight. I wish you all the luck I can!

    • cakeleevannila · November 19, 2013

      thank you so much for your support. mourning is a process…i thought for the longest time when you got through one stage you just checked it off and didn’t have to deal w that ever again! but that isn’t the way it works at all!!!!

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