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Thread: Off to the Neurologist

  1. #21
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    I guess, Jaha, that your message is king of good news or at least slow progress. What does that get? A half smile?

    Jeannette, you and I are on some of the same drugs. The docs just up'ed my gabapentin to 1800mg/day. As for the Tramadol, I'm taking 300mg (sometimes 400mg/day). One or more of my drugs makes me bit dizzy and very tired. Even though I'm tired during the day, I often can't go to sleep at night and have to take ambien, which only "kind of" works.

    My WG is extremely rare -- it attacked my pituitary which is a 1:10,000,000 occurrence. Recently, however, I have gone into the super rare thin air zone. WG is getting involved with my autonomic nerves and knocking out critical functions. So far, it has affected the phrenic nerve and the vegus nerve. Both are pretty bad and caused some serious issues. My PCP told me today that he is sending me to Mayo in Rochester. It will be interesting to see what they come up with.

    I haven't been on the forum much lately. Usually, that means I'm not doing to well or I'm doing super, super well. In this case, I haven't been doing to well. Not sending messages on the forum doesn't mean I'm not looking. I check some admin things pretty much every day and then scan the messages to make sure everyone is being nice. Its and easy job because we have such good members. Good luck to everyone as we struggle with this disease.

  2. #22
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    Hi Jeanette, I'm glad to hear you're seeing Dr Villa Forte. I've been under her care for five years. She's wonderful. She also seems to be well-connected within the Clinic. I think I'd wait to see what she thinks about the neurological aspects. Unfortunately, her best friend Dr Tavvi, who is a neurologist, is leaving the Clinic soon.

    In the meantime, you could call Dr Villa Forte's office to describe your symptoms. Giving her a heads up might accelerate another doctor's input.
    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

  3. #23
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    Jeanette,
    I am glad you are seeing one of the best, she is my Doc at CC. I am lossing my neurologist, Dr. Tavee, she is leaving on 2/14, so I will have to pick another one up there. If you are traveling from a long distance, I suggest you try to get in with a neurologist while you are up there. If you don't it may take a long time to get in since Tavee a is leaving and will leave them short a Doc. It is really hard to control nerve pain and I think every doc has a different approach, so maybe try to see what your new Docs say about the meds. I wish you all the best with getting the best treatments.
    Jana


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


  4. #24
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    Hi Jana,

    Yeap, sounds lie we are on the same drugs. A lot of the same symptoms with the nerve issues. How about prednisone? How much prednisone are you on? I know you are done with RTX infusions, right? How long did it take for the RTX do improve your symptoms?
    Did your nerve issues ever really go away after RTX?

    I take 600 mg of gabapentin about 3-4 times a day with 1 or 2 tramadols. It helps a little bit. Not a whole lot. Not sure if it's really the tramadol doing the trick or the gabapentin. I am also having heart rate issues and had an arrhythmia or extra heart beat incident the day after my 2nd RTX infusion that made me fall. I felt like 3 jolts (I think it was my heart either skipping or extra beat) which made me bit and cut my lower lip really bad then felt backwards on the floor. Went to the PCP and they did an EKG. My heart beat is getting affected by the high doses of prednisone. They put me on a beta blocker for now.
    3rd RTX infusion is in 2 days.

    Anyway, I really hope you get the new symptoms addressed soon. Sounds like you are in the hands of good doctors. I am glad you and Pete have good things to say about Villa-Forte. I was worried that she didn't have as impressive bio as some of the other specialists. I was going for Dr. Langford or Dr. Hajj-Ali but their appmt availability was further out and I want to see a specialist ASAP.

    I will follow Pete's advice and call Dr. Villa-Forte's office on Monday and describe my symptoms and let me know I will be traveling from Georgia to see if they recommend I also make an evaluation with a neurologist.

    Stay strong and positive! Don't drop off the forum. We'll help each other out!
    Please know that you will be in my prayers and everyone else in this forum.
    Jeannette

  5. #25
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    Thanks Pete! Great idea! I will follow your advice and call Villa-Forte's office on Monday. I will let them know that I will be traveling from Georgia and it would be nice if I need a neurological evaluation to have an appointment at the same time so I don't have to go back.
    My neurologist here has told me I have to wait until the RTX treatment kicks in before we can address trying to "fix" nerve issues but makes me nervous that the damage is going to be irreversible if we don't do something.
    Jeannette

  6. #26
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    Hi Jeannette,

    I saw a neurologist at Cleveland last fall. I had a nerve conductivity study and electromyogram. I was experiencing tingling and numbness in my feet that had progressed about halfway up my shin. The tests showed that something was not quite right at my L-5 vertebra. I asked Dr Villa Forte if chiropractic might help. She said it probably wouldn't hurt.

    I took the study report to my chiropractor. He took x-rays of the area and saw that I had some arthritis and bone spurs that impinge on my intervertebral foramen (the spaces between the vertebrae where the nerves emerge from the spine). He's given me 10 adjustments since mid-January. The improvement has been substantial. The tingling has retreated to the tips of my toes.

    I hope you get good results soon!
    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

  7. #27
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    Pete,

    Thanks for sharing. So, my nerve issues are actually my worst symptom right now and it's getting very debilitating. I have major numbness, tingling, nerve pressure/pain like my feet are permanently asleep really really bad; feel like I am dragging two huge rocks. also like vascular pressure in my feet to the point that I cannot walk very well. This morning my right foot was dangling and I couldn't put weight on it. After I took my prednisone, it was a little better. has gradually gotten worse. Between December and now, the numbness has extended to part of my shins, like you and has progressed to my fingertips, and face now, around the right side of my face and around my eye. The face numbness comes and goes but the feet it's there all the time. My arms too but they hurt more than being numb. Vision blurriness on my right eye. Prednisone calms it a little bit but it's becoming less and less effective. I am trying to hold on to not increasing the prednisone (at 60mg/day) right now but I can already tell it's a matter of time. I won't be able to bear these symptoms much longer and, if the RTX treatment doesn't kick in, they will have to increase the prednisone. Especially, if it's irreversible. I am very scared and worried I won't be able to walk soon.

    Back in January, local neurologist did an MRI of brain to check orbital area behind eye and head since I had a blood shot eyer. Didn't see any masses or anything at the time. She also did the nerve conductivity study and she said the parneal nerve was affected the most but not that bad. That was back when the numbness was just in my feet. She said to do a biopsy she would have to permanently damage the nerve in the area of the biopsy. She said it probably wasn't worth doing since they were pretty sure I had Wegeners. I actually don't have biopsy proof it's GPA.

    I am curious if chiropractic care or something like acupuncture might give me some relief. I was actually seeing a chiropractor before the disease had gotten bad and numbness had just started to show up in my toes. only thing he said was my neck curvature was off -- too straight - so he was working on that.
    have you tried acupuncture?
    Jeannette

  8. #28
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    Hi Jeannette @JMG

    I have not tried acupuncture. I've seen chiropractors off and on since I was in my early 40s for muscle spasms, etc. I've had a history of disc issues. My spine is also a bit too straight.
    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

  9. #29
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    I'm glad that you both are getting the opinions of specialists. It sometimes takes awhile to get things all figured out. The neuropathy I have is called Small Fiber Neuropathy and is found by 3 small punch biopsies on the leg and only certain labs read them. I had all the other nerve conduction tests and they were fine. I didn't get this until about three years ago, I have had Wegs for over 7 years now. I started having RTX in 2012 and have had 19 infusions, at present I am going back down on preds at 13mgs. I also have degeneration in my spine and neck which only adds to the pain. I tried gabapentin and could not tolerate how it made me feel. My neuropathy is in my hands and feet, burning, lightening bolts pain and feels like I have gloves on. I don't think the Rtx is helping my SFN, I'm not sure anything is right now.
    I have only had possibly one short period of remission, but I am an oddity, a lot of complications.
    I wish you both, all the best with your visits at CC, they will figure it out and you will feel 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!


  10. #30
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    Thank you Jana. I really do hope you find some answers too soon.
    So, your SFN has not been relieved by anything? How do you deal with it?

    I was thinking I have SFN because it sure sounds similar to what I am feeling.
    I have to research it online. The neurologist did the EMT study and said I had neuropathy but at the time it was done it wasn't that bad, nothing specific though. She said a biopsy would leave permanent damage on the nerve and we wouldnt really get anything from it since they didn't need it to prove it to say I have Wegeners.
    Did you get permanent damage on those nerves they biopsied? If so, was it a lot of damage?

    My neuropathy is really starting to disable me. Sunday morning my right foot was like a dangling noodle. I couldn't bear weight on it. Bumped up the prednisone to 80mg/day. Have to go see my rheumy tomorrow. 3rd RTX infusion was today and went well but nothing has changed. Only thing that improves my symptoms a little bit is increasing the prednisone. After increasing to 80mg, I got some more feeling back and can put a little bit of weight on it but very limited. I should really be using a walker.


    Jeannette

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