neurologist appointment

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amy and i went to the neurologist this morning for my emg, a nerve conduction study where you get leads taped to you in different spots then shocked the second part of the test involves leads, a needle (that has shrunk quite a bit in size since my first one) and flexing of different muscles, not really a fun howdoyoudo in the morning, but at least it is done and it gave me an opportunity to talk to my neurologist who i just adore, not just because he might be the most compassionate dr i have ever met but also bc he is smart and gives a shit!  so now all of my test results are in, at least for now.  my blood work that he ran showed no issues, and the only problem any of the blood work showed was a high activity of antibodies for epstien barre (mononeucleosis) that has been elevated since august.  my eeg was totally normal meaning there is no seizure activity going on.  the mri of my brain showed nothing structurally wrong in the brain itself, just a messed up spine and a constant infection in my sinus cavities-no lesions, no tumors, but there is a brain there, i have pictures if there are still some of you out there doubting this!  the emg showed no decline over the last year in nerve conduction, which again is a good thing!  having negative test results is a double edged sword!  while you don’t want to have anything you also want an answer, so negative test results leave the questions why and what is going on?

i told my neurologist about the last appointment i had w my gp, and that he is so hyperfocused on the speech issue he is not dealing w some pretty serious issues that need to be addressed-my gi system slowing down so much, my blood pressure rising and falling, infections that are leaving deep black-purple spots on my legs, infections in my eyes, worsening psoriasis, constant fevers, vomiting and a few other issues that seriously need to be taken care of.  so my neurologist asked me what my gp said about my stuttering and i told him that he looked things up on wikipedia in front of me, he has no ideas and tried to say it was psychological aphasia.  i do not have aphasia, i do have dysarthia.  aphasia patients have an overall decline in communication both receptive and expressive.  they generally lose ground in all areas of communication not just speaking, it effects their writing and sign and signal language too.  dysarthia is an issue w the muscles and signals to the mouth and tongue, making it hard to speak.  i can write, obviously, quite well, and for the most part i can understand everything that is said to me as long as it is said loud enough, there isn’t alot of background noise and if the person talking is not talking at about 110 words per minute, also the more tired i am the worse i am at paying attention to what i am hearing. my receptive speech hasn’t changed that much, these have always been issues for me.  so, my neurologist is sending me to speech therapy.  he said we are still going to try to find out the why but in the meantime i need to be able to talk.  he knows that right before i got sick this last time, i was working on oral story telling and that i do alot of social work in the community.  not being able to speak is embarrassing and it makes it hard to accomplish those things.  so despite having a name for my disorder, i need to get back on track as much as possible.  he also said he was going to call my gp and talk to him personally, not just fax reports back and forth.  that was pretty cool.

so i was a bit disheartened i don’t have a name for my illness yet.  no name leaves my brain open to fear.  several times an hour i find myself chewing my stubby fingers thinking the words “parkinsons” repeatedly in the back of my thoughts.  

the best part was after my test, amy and i were walking out into the parking lot, and my neurologist was outside putting rock salt down on the ice, which in and of itself tells me what i cool cat he is!  but due to my unsteady gait, he rushed to my side and lifted my arm and wrapped his around it.  he said “if you go down i am going down with you!”  this man, who is at least 60 with a voice like ricky ricardo and silver hair, in his pretty fancy turtle neck sweater helped me to the van.  i almost wanted to cry!  

 

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3 comments

  1. jmlol · November 26, 2013

    Ok, I don’t want to be weird but I am going to put a couple of links in this comment about research that might fit what you have so that you can ask your doctor about (you can print him copies). It might be irritating, but I really want to help and I used some of the results you gave in this post and got a small bit of research that might be good to look into. Admittedly, I am not a doctor, but it can’t hurt. It’s pretty high end medical terminology, so if you try to read it, it might be gibberish to you.

    http://brain.oxfordjournals.org/content/119/1/1.full.pdf+html

    http://link.springer.com/article/10.1007%2Fs00431-004-1529-3?LI=true

    http://link.springer.com/article/10.1007/s004150200012

    • cakeleevannila · November 26, 2013

      no, thank you so much!!! i tried to read the first article and i am going to need time to discern through the terminology. i was able to figure the other 2 out. i think they would be able to see hydrocephalitis on the mri, although i am not positive about that. i do believe that this is linked to the epstien barre either directly or indirectly. for alot of ppl who have had serious reoccurring epstien barre it causes alot of longterm autoimmune disorders-ra, lupus, fibro, and ms to name a few. i can definitely give this info over to my neurologist, but not my gp-if i am too educated about my own health he thinks i have some kind of control over it, it’s weird, but educated patients make him quite uneasy. i find that to be disheartening bc who knows better than the patient what is going on in their body? i know everyone of my symptoms, and i can guarantee that, whether purposefully or through bad communication, he does not! if i wait for drs to tell me i am quite ill, well, it would never happen!

      • jmlol · November 26, 2013

        Yea there are a lot of doctors intimidated by knowledgeable patients (This is something I see all the time, because I am so extreme in my med knowledge; most hate me vehemently, lol). If I remember correctly, it said that hydrocephalus was not present in all cases and some had clean mri/ct results. I would suggest asking your neuro to refer you to an immunologist too. Be gentle when you ask, though. You can see both at once which will let you rule out it in the very least. I honestly see an immunological pattern in your symptoms, and even if there isn’t it might be helpful to try and knock it off the list of culprits. The EBV might not have been the cause of the infections, but the symptom of an existent immuno problem. Make sure when it’s feasible that you get a new GP! It makes me angry when doctors say something is psychological; they are not psychologist and have no training to diagnose something like that. It’s like a lawyer trying to diagnose your medical issues. They forget that.

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