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612876 tn?1355514495

Sorry, Just Venting

Hey gang.  I feel like every time I turn around I'm telling you guys about some crud I'm going through.  Surgeries, hospitalizations, the dog transfusion hooplah, the kidney stone, infections, falls and resultant injuries (the retina injury was exciting wasn't it?), blah, blah, blah ... I'm really starting to feel like a huge whiner.  :-(  So for anyone/everyone else who feels like I'm becoming a huge whiner, please just disregard this post.  I just need to get this off my chest because I'm having a really rough couple of days and my stress level has reached that boiling point where sleeping and eating are nigh impossible and venting to "normal" people hasn't really helped.

Yesterday I saw the doc I was going to for my pain issues.  She is a neurologist who specializes in ... oh, it's a mess of stuff ... here, I'll copy and paste it from the hospital website:  "Neuromuscular disorders; especially, inherited neuropathies (Charcot-Marie-Tooth disorder) and neuronopathies, small fiber neuropathies, and post-transplant neuropathies."  First off, before I start my massive e-nervous-breakdown, allow me to say:  if you ever need such a specialist, Dr. Victoria Lawson of The Ohio State University Medical Center could not be a better choice, and I say that without reservation.  Also, that is, I'm quite certain, the highest recommendation I've ever given of a physician I've ever personally seen since I've been sick with this whole mess.  No joke.  This woman knows her stuff.  I didn't have to explain *anything* technical because she actually knows our dysauto jargon, she also "gets it" (in terms of bedside manner), and I didn't have to suggest (nor beg for) tests or treatments because she was on top of things enough to formulate her own agenda.  [The farther along in this process you go, the rarer that seems to become.]

For those interested, here's how to find her for yourself:  

http://neurology.osu.edu/neuromuscular/lawson.html


Maybe it was how on top of things she was that threw me for a loop.  No, no, it was the stupid safety pin.  That's when everything started spinning out of control.  Because of my short term memory damage, I'm not often able to recall things this clearly, but emotion has a way of strengthening memory (that's scientific fact, not me waxing poetic about how emotional I was).  I believe my exact words were "I of all people should have realized.  I send people links about this all the time."  I got screened for peripheral neuropathy for the first time ever during my appointment yesterday.  Though I've never had the test before myself, through my "work" here, I know all about it.  So I knew exactly what the implications were as it unfolded and shock waves went out through my ... my what?  My mind?  My psyche?  I don't know.  By the time I realized I had less sensation in my left foot than my right, you could have knocked me down with a toothpick.  It only got worse.

After she'd finished testing that Babinski's sign was absent (or plantar reflex was present?  whatever ... tickling my feet) with the bottom of her reflex hammer, she put it in the sink and started running water on it.  I am, perhaps an idiot because I wondered if my feet were really gross that she had to wash it *right away*, LOL.  She was changing its temperature with the water, though.  Later, she retrieved the metal instrument, dried it off, and gently touched it on the top of my bare foot and asked about the temperature of it.  I felt neither hot nor cold (nor warm nor cool for that matter).  I could feel the presence of something contacting my skin, but that's it.  Just ... light pressure? ... I guess.  I was, and I am not exaggerating even slightly, shocked and horrified at once.  Everything felt like it went in slow motion after that.  She continued on, I can't remember if it was higher up that leg next or the other foot and then up the legs or what.  I think both feet couldn't feel temperature and both legs could and maybe I think, as with the pin sticks, my left leg did "worse" than my right.  I want to say my left hand might have been worse too, or maybe I'm imagining that?  Everything seemed far away for a minute there ... I really think I was shocked.  Like this couldn't be happening to me because I would have KNOWN.  I mean, I rambled about as much to her I think, about how could I not KNOW that one side of me felt differently than the other?

It still isn't really computing because I know I feel things.  Rationally, I know my denial is stupid because of course neuropathy doesn't translate to complete and total loss of sensation, but my mind wants to say if I feel something then my sensory nerves are OKAY.  Why does it really matter?  I knew (or strongly suspected, considering my slight abnormality on QSART and worsening symptoms since) that my autonomic small fiber nerves weren't in such great shape.  Why be comfortable with that but wig out over sensory small fiber nerves?

At the end of the appointment, she recommended a bunch of tests.  A skin biopsy to follow up on the small fiber nerves/neuropathy, a fasting glucose tolerance test, a new EMG to check large fiber (hadn't had one in a while), and some blood labs.  The blood labs would include ruling out amyloid (which I vaguely know of but have never been tested for ... don't know a ton about it ... know it would be good to have it come back negative, but for some reason that one isn't concerning me ... don't ask, I have no reasonable explanation) and something with a long name that she spat out quickly and I told her was a new one to me.  By way of explanation she said it was a very rare X-linked genetic disease, but it would be good to rule it out just in case.  I said fine.  I briefly considered asking her to write it down so I could look it up when I got home, and then thought I'd be better off not worrying about it so I didn't.

My curiosity is too strong, and my powers of google-fu are too good.  I pieced together the content of one suspicious question she asked me that I figured had to do with the genetic disease (because it wasn't related to any of the symptoms I came to her for even remotely but WAS related to how my father died ... ahem, genetic much?), and added the key word from that to a few other words that were more obvious and the very top hit was the condition she'd mentioned.  Turns out it does have an alternate, shorter, MUCH easier to remember name.  I suspect she was being kind in hoping that I wouldn't go home and look it up and freak myself out by giving me the long and hard-to-remember name.  Blast my google-fu!!

My EMG got scheduled for the crack of dawn this morning, so I had to get up early anyway.  I ended up sleeping less than an hour last night.  I read too much about the rare disease (1/8 as many people have that as have Narcolepsy with Cataplexy worldwide ... that is really, really rare).  The more I think about it, the more I think it is the not knowing that is driving me batty.  Not knowing what the results of the biopsy will be, not knowing about this other rare disease, not knowing about the glucose test, not knowing what will come next if all that comes back negative.  I do know that if everything comes back negative, I'll have that deflated feeling like somehow my body has failed me or betrayed me; it happens every time I go through a battery of testing and come up "empty-handed."  Even if the doctor doesn't act incredulous, I still feel like for as sick and awful as I feel, I "deserve" to have it SHOW in objective terms.  Does that make sense?  Sometimes even when you know you're being irrational, you still feel things.  This is one of those things for me; all negatives on a battery of medical tests feels like an F on a school exam.  :-p  I KNOW I'm sick, and I know that the docs know it now too, but after so long of being not heard or not believed, I still feel like I need to prove it over and over again.  Does that ever end?  
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Avatar universal
I'm so sorry for all you are going through.  It does seem like it is just one thing after another to sort out, diagnose, treat, and of course deal with emotionally.  For me, I had a lot of denial about the cognitive symptoms.  It took me a long time to be able to acknowledge them, so I can relate to the denial piece.  

By the way, my sleep is horrible too and I have tried so many sleep meds. It is frustrating not to be able to get good sleep and does make it harder emotionally.  Interestingly, I found this group a few years ago one night when I could not sleep!

Please know that I am thinking of you and glad that you are reaching out to us.  Keep us posted.  

Take care,
Laura
Helpful - 0
Avatar universal
I recently had a situation with my son, he was found to have an enlarged spleen my grandfather died because of a gentic blood condition and my father has it so I fully expected my son too have it after he had an ultrasound and found to have the same symptoms my grandfather and father have, in the end he did not have anything at all, his spleen is just enlarged they said it was nl for him so I totally can relate too the waiting game, but you can't jump ahead what is , is already there and I know its hard but stop looking on the internet I did that with my diagnosis and then with my son it made me crazy I so hope everything turns out positive for you keep staying encouraged and keep up your spirits.
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Avatar universal
What can one say to that? There is nothing I can say to encourage and comfort you, but I care.
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Avatar universal
Aw, Heiferly,
I am sorry that you are having to go through all of this, as if you have not been through enough. Please know that I pray for you and think of you and all your struggles and am inspired by how you still manage to stay so positive and very helpful to the rest of us.  I think the not knowing is the worst and I get what you are saying, why do we feel we have prove it over and over again....that we are sick.  I can relate 100% to this.  It's almost as if it's too much for any person to believe if they are not in our shoes. I have to go back to Mayo in Phoenix in a few months.  They are going to do a genetic study of my DNA to try to find the cause of the dysautonomia.  So silly I am almost hoping for something to show up so I can make sense of this mess that my body is in, but then again, I hope it shows a perfect DNA strand of health. It's definitely a bit of a dichotomy!  Until you know I hope you can have peace and the hardest thing to do is to not walk in fear of the unknown.  It's something I struggle with every day.  But I hope you have better luck than I do in this walk.  You have just been through so much, I hope and pray that they find something, and that it is a simple solution to make you feel better.  I have autonomic neuropathy and it's been hard to understand since my doc here doesn't know much about it and I was just diagnosed with it a few months ago at Mayo but have not been able to return due to insurance situation.  My hands struggle with going completely dead at night and my legs also have this occassionally.  Waking up is always interesting.  :)  I feel like the tin man trying to get some feeling in my tin body.  I have noticed that light amounts of my yoga poses of choice get things moving again. I know you have heart struggles too, so don't know how that would work for you. Like I said, I do very very light poses and only ones I can do.  But at times my pain is unbearable which the doctor told me have nothing to do with autonomic neuropathy. So I'm confused and also looking for answers.  Please let me know what the doctor comes up with.  And I'm sending you lots of peace today and thanks for sharing.  
Tkimber
Helpful - 0
1481176 tn?1291392092
With all the help you have given others and me I was glad to read your venting.  I am just getting into this mess I have and I have already done some venting.  I know that after at least half a dozen ER visits and a 3 day hospital stay no one knew what to do except send me to a neurologist.  When he said there is nothing the VA Medical Center or Emory Hospital (which works with the Atlanta VA) could do about Autonomic Dysfunction, I was ready to freak.  But at least I had a diagnoses!  That after 6 months of being told they could find nothing wrong.

When he found the neuropathy in my legs with the reflex hammer (?) (I call it a tuning fork.) I was surprised.  He put it on my left foot and asked how strong I felt it and my answer was felt what?

I, too, am sick of all this and wish I had a cure,but even the Vanderbilt web site says there is no cure but that they can treat the symptoms.  I've got a cane for short walking, a walker for moderate distances, like the hospital and have just been ordered a wheel chair so I can get out to parks and other long distances because I get too darn exhausted and weak, too quickly.

Vent all you want!  Isn't that what we are all here for, after all?

Thanks to you and all the others who have listened to me and offered help.  You're all a godsend.

Dumb question:  I have read in places that men are more susceptible to Autonomic Dysfunction than women.  How come most of the people I have been hearing from on this subject are women?  Is it because of our inate inability to ask directions?  Just a thought.

Richard
Helpful - 0
1323747 tn?1364806882
It sounds like there is so much going on and the answers are coming slowly.  I know from my own experience that everything becomes more overwhelming and more emotional for me to deal with if I don't get good sleep.  It becomes much harder to deal with....and think about...and I cry at the drop of a hat.  Contact your primary doctor and get some help with that post haste.  You need to sleep.  

Your year has been unbelievably high in stress.....from doggies health to your own.... sleep and someone who can help you emotionally navigate such uncertainty can put you at your best for dealing with all.  I have no doubt you can....but you need sleep....and for sure help with dealing with  all.  I am glad you are reaching out...and you have always been there for all of us....so don't ever worry about venting!

I know what seems extremely hard today can look manageable another...Hang in there and let us know how things go next.  Marie
Helpful - 0
967168 tn?1477584489
I am so sorry you're having to go through this, sometimes the not knowing is worse than what we do know we have. It's excruciating waiting and only makes us stress more and can make us suffer more with our health issues.

I hope you find some solace in talking to a therapist; I finally admitted I NEED help and going also; maybe they will speed your approval along quicker.  You have been through so much you don't deserve to have more stress put on you.  Is there any way to get your approval put through quicker?

Genetic things scare me...my mom had cancer (breast; ovarian) and my dad died recently of lymphoma and something to do with his heart my step family can't remember. I remember how scared I felt when my EP said my heart condition was probably genetic; not scared so much for me but for my children because I didn't want them to go through what I have.

Maybe the time will pass quickly and you'll be able to get all of your testing back with good results  =) Keep your chin up and take care of yourself; find something to keep you occupied that's fun.  I don't have it half as bad as you do and I go stir crazy; luckily my husband is a game nerd and we play games together and helps keep my mind off of other things.

oh I thought of you today at my new cardiologist appt...he said he thought he needed to write me a prescription for a helmet,and asked if I knew what they were... he said he thinks I've fainted and hit too many walls and floors in my life :P
Helpful - 0
Avatar universal
Aww Heiferly I am so sorry! Sending hugs your way. As far as u not knowing u have the neuropathy I have it and am just now realizing how bad it is as have to look to see where my hands, arms and legs are in space. I think before I thought I had feeling because I have such severe pain in them. Still confuses me how you can be numb and yet have pain. I know the scientific explanations but still.
I wish I could spout some wisdom that would help you but alas I don't have your brains or.talent for that.:( Do you realize how often you prop us all up? I hope you do because I.admire how you handle your chronic illness so much and yet always reach out to us. So as I say no wisdom from me just my.prayers and thoughts are with you and I pray you get good news.
Beema
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612876 tn?1355514495
Oh, forgot to say (I think?) ... EMG was normal.  No large fiber involvement.  So that's good. :-)
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612876 tn?1355514495
Hit the character max ... still going.  So the other thing is that for the first time, something could make a meaningful connection between the way my father died and what I'm going through now.  I don't know what to do with that, or how to deal with waiting for that answer.  I talked to my mom about it, but I have to keep it quiet from my sister until I know for sure.  I don't know if this is perfect timing, or the worst timing ever.  She and her husband are at "that stage" in their life together.  I know it's not my fault, but I may be waiting to find out news that could break her heart.  If I got this from my dad, there is a 100% chance my sister carries the gene as well.  This waiting is crushing.

I just feel like I'm in this torrent.  I keep thinking about the peripheral neuropathy.  What does that mean for me?  Have I been in denial?  Why didn't I know how bad it was getting?  How am I going to make it through the rest of these tests?  How long will it take to get the results?  How will I steady my mind in the meantime?  Patience is a virtue, but it's one I'm shallow on.  :-(  I am a control freak who feels distinctly *not* in control at the moment.  I don't know what to do with myself.  Twiddling thumbs is not my forte.  I can't sleep.  I can't nap.  I don't want to eat.  Even the Ensure Plus sludge that is supposed to be buffering my loss of appetite before this now seems miserable to choke down.  I was supposed to be getting a referral to a therapist, in part to deal with the general issues of living with chronic illness, but that seems to be taking eons to go through.  AAAGGGHHH!!  Is this one of those "Calgon, take me away" moments?  If only I could get in a tub without passing out and drowning ...  ;-)  Yikes, that makes that whole Calgon slogan take on a really morbid spin.  Nevermind that.
Helpful - 0
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