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How initial Neurology appt went today

Posted , 4 users are following.

EBVfighter
EBVfighter

Hi ya'll. I thought I would hop on here and give you an update to my initial appointment with neurology.

When the doctor entered the room, she introduced herself and sat down and immediately said to me, " We are only going to discuss Neurology aspect of things, we are not going to cover everything else today. "

This was somewhat alarming to me. First off let me say I do completely understand that her specialty is neurology and it is quite obvious that is what we would cover during the appointment. Doesn't that go within out saying it? Kind of bold to open the appointment up that way, as if she felt I needed to be reminded for some reason? Not completely sure why she felt the need to even say all that.

Anyways, she said she reviewed all the notes from infectious disease and didn't believe further testing would be of any benefit. She hinted towards fibromyalgia. I explained to her I was diagnosed with this many years ago, and what I have been experiencing is nothing of the sort. She believes and stated that as we get older fibromyalgia will change its course over time. I call BS!

I do honestly believe when a doctor wants to use fibro as a diagnosis, especially when they conduct zero testing and don't take a thorough history, I think it's a gentle way of dismissal for any patient. It's a way of appeasing the population that are desperate for an answer.

The doctor did immediately dismiss a few suggestions I gave her from the many hours and days I have desperately spent searching for an answer. She kept hinting at fibro.

She offered an EMG test but believes that it will come out with no abnormalities. Her reasoning behind this is she says, EMG only test large nerves, and she believes my small nerves are being affected (again hinting at fibro) I agreed to an EMG which is scheduled out for 6 weeks. The entire conventional medicine is seriously failing us folks. It took 6 weeks to see infectious disease. Took another 2 months to see neurology. Hurry up and wait! Covid burn out or said no to the jab? The shortage of doctors is everywhere!

She also said that if the EMG comes out with good results, she is willing to send me to a tertiary pain clinic to get a 2nd option if they agree or disagree to a fibro diagnosis. This was probably the only part of the appointment I could actually appreciate. Atleast she is willing to get a 2nd option from her own self.

I am incredibly saddend today and losing what little hope I had in conventional medicine. I don't believe, in my opinion, that conventional doctors will think outside the box, and actually consider rare cases, that don't always fit the boxed description. If it isn't clear cut, it's completely disregarded.

I guess that's all for now. I hope today was a better day for all of you! Wishing you all care and peace during the journey. If anyone wants to share their neurology appointment journey, I am happy to listen. I am quite curious if anyone had a spinal tap done.

Until next time, keep on-keeping on.

0 likes, 15 replies

15 Replies

  • Jaky47854
    Jaky47854 EBVfighter

    Posted

    that convential doctors are so close minded and by the book

    • EBVfighter
      EBVfighter Jaky47854

      Posted

      I can appreciate that they use what knowledge they gained from their textbooks and years of study. However I believe a true doctor is able to take that knowledge and think outside the classic textbook cases.

  • marcusG
    marcusG EBVfighter

    Posted

    This sounds completely insane and just of lack of DOING your job. How can you be referred to a neurologist while experiencing neurological symptoms and be denied or discouraged from neurological testing. Why would the doctor even give a diagnosis without further testing??? The emg is good because it can rule out some other scary conditions but not doing further testing is crazy. I have appointment with neurology sept 23 and pray I have an understanding doctor that will exhaust all efforts before trying to diagnose. I hope all is well with your nerve study and further appointments

    • EBVfighter
      EBVfighter marcusG

      Posted

      Marcus,

      I am so glad to hear I am not the only one that feels this way. I left the appointment and the hour ride home left me thinking I should fire this doctor immediately and my infectious disease doctor as well. I almost convinced myself to completely give up on conventional doctors all together, and just let be what will be.

      If only the doctor could have actually seen my facial expression, covid masks are still a thing apparently...

      Not a single test was run today, it doesn't make sense to me. Granted I am no medical expert, but if I was, I would do whatever it takes to get answers for a patient that states there is zero quality to their life from a long road of chronic illness. How she layed her head down tonight thinking she did her job to the best of her ability is beyond me. She left it up to me to decide if I wanted an EMG, if it were up to her, she didn't even feel it would have given us any answers. Again she believes this is a classic case of fibro AKA doctor's don't know the cause so they slap fibro on their paperwork and call it a day. I am not saying I don't believe fibro is real, I just think that is the easy way out for doctors.

      Marcus, I would so appreciate it if you wouldn't mind sharing how your appointment goes and what plan you come up with. I hope and pray your appointment goes well and that you are happy with the plan moving ahead.

      I hope to hear from you.

  • saba2012
    saba2012 EBVfighter

    Posted

    omg ebvfighter i can't believe it the experience you had with the neurologist, i too believe that conventional doctors are failing us, big time, i think my dogs get better care that us humans do, this is so important to find out what is going on, and the stuff she said in the beginning, omg, the brain is the organ that regulates pretty much everything and you want to know, i'm speechless, but me too is very disappointed in our healthcare system, hang in there and keep us posted

    • EBVfighter
      EBVfighter saba2012

      Posted

      I'm trying, thank you!

      Have you seen Neurology? If you don't mind sharing.

      Thank you!

    • saba2012
      saba2012 EBVfighter

      Posted

      yes, i got the results from the mri and eeg and my neurologist said everything is normal, i was very relieved, continue to have the tremors and other issues like you also describe in the ebv symptoms, one day or couple of days are good and then again days that are not so good, so in my bad days, just crawl in my safe space which is at home and pray that it will pass, please continue to share your good and bad days here and how things are going

    • saba2012
      saba2012 Jaky47854

      Posted

      yes, he did, and i actually did not know what it is so i've googled it, and yes it was a 1 1/2 hour test where you have all the cables hooked up to your head and you can't move at all while laying down, but i think you all agree when it comes to brain issues and especially here related to ebv it is important

    • EBVfighter
      EBVfighter saba2012

      Posted

      saba,

      Was it a brain MRI or spine, or both?

      thank you!

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