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Thread: Off to the Neurologist

  1. #11
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    What is SFN? Hope you get some answers soon.

    Rose

  2. #12
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    Quote Originally Posted by Jaha View Post
    I am off to CC tomorrow to see my neurologist about the SFN and the vasculitis in my Brain. I had a Rtx infusion on Dec 9th and have had a lot of weird things happen since then. My WBC, neutrophils and lymphs have all about doubled. I took a round of antibiotics because we thought I might have an infection and they are still quite high. I am also having a lot of pain and numbness in my head, face and ears. I also am having a lot of nerve pain in hands, feet and chest. My pulse is irregular and I have been very tired all the time. I don't know what is going on but I hope she will have some suggestions. This stuff really sucks!!
    Oh, dear. My thoughts are with you! I hope you find some relief and answers.

    Sent from my SAMSUNG-SM-G935A using Tapatalk

  3. #13
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    Quote Originally Posted by Jaha View Post
    I'm back from the Neurologist and she had me get an EKG and some labs done. She is weining me off of cymbalta and starting me on another medication for the SFN pain. She has also ordered another MRI of the head, to see if I have more vascular changes happening or anything else. The labs that She ordered is going to check for possible CLL and also some things for my heart. She asked me if I thought that the rtx might not be working anymore. I told her that I really did not know, I just know that I feel like crap and that my #'s are all raising instead of going down. I will know more when my tests results come back, but for now I will just keep doing what I can and rest when I don't feel good.
    I only now read it. Sorry for your agony. What are SFN and CLL ? I hope you will soon feel better.
    If you just got the rtx couple of days ago, it is too early to know if it helps. In the first month after I get it, I feel pains all over my body, like after a car accident.
    Hang in there. Please update us. Sending prayers ♡♡
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  4. #14
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    Rose,SFN stands for Small fiber neuropathy, they are the nerve fibers that lie just below the derma of the skin. They control sensation and autonomic factors. There are many reasons why a person can have them to start detorating. It is found only thru doing a punch biopsy on three place of your leg. There are only certain labs that can read them. Many times they mistake this for Fibromyalgia. They think mine is caused by the autoimmune disorder. There is no proven treatment for it, just control of pain. It can cause a lot of things to act up, including nerves to the heart.
    Now I wanted to let everyone know that so of my texts have come back, my EKG is normal and the tropl.(can't spell it) in other words I haven't had a heart attack. The other tests are still quite out of whack and the Neurologist wants me to speak with Rheumatologist about further testing. I also have an appt with a Cardiologist so he can test me for POTS.
    I am just taking it easy and thought I would update you all.
    Thanks for listening.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


  5. #15
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    That was my question, too, Rose. I found an interesting abstract about it....
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3086960/

    How has your brain been affected? What pain meds are you on?

  6. #16
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    I am on cymbalta, oxycodone, and tylenol, but she is taking me off of cymbalta and will replace it with another antidepressant, after a 4 month wean. My Brain is showing some vascular changes, I will be having another MRI in Feb. Thanks for the article, it is packed full of info.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


  7. #17
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    Jaha - sorry to learn about your recent issues, seems with this disease of it is not one thing it is another. We just have to have to keep on keeping on, stay vigilant and in touch with our medical team. Be mindful of GI issues with the pain meds -

  8. #18
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    Well I came back last night from CC, after seeing the Cardiology NP. They ran a stress, echo on me and also did labs. It seems that I have Hypertrophic cardiomyopathy ( which is a thickening of the back of the heart muscle), caused by long term high blood pressure or can be hereity.
    The tachycardia they are guessing is from the cymbalta, that I am getting weaned off of. I guess the Doctor is going to review this and contact me if anything different.
    They were also able to do my MRI while I was there. I am holding my own there, in other words nothing has changed since the last time, woohoo!
    They also ran labs and my WBC's are still elevated, a little higher than before taking the antibiotics for the UTI. So I am starting another course of antibiotics and then I will have another culture.
    So there's the update and I am still working towards feeling a bit better soon!
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


  9. #19
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    Although I guess the progress you're showing seems maddeningly slow, it's still progress. Glad for the better report!
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  10. #20
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    Jana,

    Sorry to hear about all your are going through. I hope you find real answers with your cardio issues and feel better soon!
    I feel your pain.

    I am heading to CC at the beginning of March. Have an appointment with Villa-Forte on March 3rd.
    Not sure what to expect but my local rheumy is not convincing me that she knows enough about Wegeners GPA.
    Have a lot of nerve pain in my feet, hands and face. On Gabapentin and Tramadol but they don't really help that much.
    Do you know of better meds than Gabapentin for nerve/vasculitis pain?
    It's unbearable sometimes.
    I am about to go through my 3rd Rituxin infusion. No improvements in symptoms yet. On 60mg of prednisone daily.
    Also, since I have so much nerve issues, do you recommend I make an appointment with a neurologist too while I am at Cleveland Clinic or just stick with Villa-Forte for now?
    It would be my first visit to CC.

    My thoughts and prayers will be with you.

    Jeannette

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