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Thread: Off to the Neurologist

  1. #31
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    I tried gabapentin and could not tolerate how it made me feel.
    I'm totally with you on the gabapentin, Jaha. Since they up'ed me to 1800mg/day, I've been feeling terrible -- dizzy, light headed, and a little foggy. I still have good reactions and I'm thinking clearly, but feeling terrible. Today, I decided to go back to 1200mg/day and see if I feel any better, but with tolerable pain. If I feel better and still have a bit of pain, I'll up my tramadal and see if that helps. Another option is to go back to hydrocodone. I don't like to do that because, thanks to the druggies, the gov't made it very difficult to get even if prescribed. So, I hope the tramadol works.

    I'm a little leary about changing my dose of gabapentin, because I've been feeling pretty decent for the past 3 days. I started the higher dose of gaba about 2 weeks ago, so that would be about right. We'll see what happens.

  2. #32
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    My mother was on gabapentin, I don't know the dosage , but the kidney dr. thought it might help her with essential tremors as well as her blood pressure but she also couldn't take it. She has a fentanyl patch (75mcgs) that I change every 3 days and also on hydrocodone. But she is in soooo much pain with 4 bad back surgeries and torn rotator cuffs in both shoulders and arthritis that the dr said was beyond horrible. Nothing helps her, that's also why I thought I would try that gmd and see if that helps.
    Vdub, I hope you can figure out some combo that helps you out. Have you ever tried the fentanyl patch ? I don't know if you can use it with the other things you take because it is potent. There is a epidemic of heroin addicts mixing the 2 and so many are dying from it.
    Life isn't about how you survive the storm, but how to dance in the rain !

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    There is a epidemic of heroin addicts mixing the 2 and so many are dying from it.
    Somewhere in my snooping around the internet, I came a cross a reference that said the US gov't hadn't put strict controls on Tramadol yet because it has a unique property. Apparently, if you crush it to smoke or crush it to mix with water and inject, the side effect is "you die". That probably keeps most of the junkies away from it.

  4. #34
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    Default Re: Off to the Neurologist

    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!!
    Hi Jaha
    I am reading this post OMG I have someone who actually had/has what I am experiencing for 3 yrs now. I get pain so bad in my head, it quick sharp pains that just shoot all over my head, get dizzy, loose vision for a short period of time and my head goes numb. IT can go away just as fast as it comes on. It's so strange. They have done an MRI about 4 months ago and no dr has told me the outcome of the test, so I am thinking it's all good. Then I have chest pain, but they can find nothing wrong with EKG.
    My hands and feet go numb all the time, hard to walk some days. Last June/16 when I was told I had GBS, they said all these symptoms were GBS. I had nerve test done and it showed I have nerve damage through out my body and weakness from it. I used a walker for 4 months then went for physio which helped a bit, but now it's all back and now I am told I never had GBS in June of last year, that it was GPA the whole time.
    I had a doctor tell me three years ago (when all other symptoms started and dr's said it was all in my head) he believes I have CLL. I was going for monthly blood test. Then had to change doctors and the new dr looked at my card to take to the lab for testing for CLL and he tore it up saying "oh that's crazy" you don't have it.
    I've been through so much (as all of you on here has been also) just so frustrating when you have so many symptoms and they tell us were crazy. BUT, it's all adding up now for me.
    For years I have had colonoscopy and endoscopy done. Pulps taken out but not cancer, so they said it was nothing. I get acid reflex so bad , stomach swells up and the pain is unbearable ! Lately the stomach pain is so bad I refuse to eat, eating makes it worse. doesn't matter what I eat it swells. I have tried so many medications and diets for Irritable bowel over the years and nothing works.
    But after reading this post and what you have been through and your symptoms, I don't feel alone anymore.
    I will be bring in all paper work of all the test of bowl and endoscopy to the rheumy in two weeks. They gave me pic's of what they removed so I will show her.

    So glad I came across this post, I don't feel like it's all in my head now.

    How are you doing now with all this ?

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  6. #35
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    Default Re: Off to the Neurologist

    Susan,
    I am sorry that you are not being taken seriously about your health concerns. I have had that problem with some on the Docs I have seen at CC. I am seeing a new neurologist and gastroenterologist in Dec, at Ohio State, where my oncologist is. I will still see my Rheumy at CC, I have an infusion on Friday the 13th. I still have a very good cardiologist at CC and need to have more testing done, because BP keeps bottoming out and then going really high. I also need to get back to my pulmonologist, but that is going to have to wait for now. I have to many complications right now to keep it all straight.
    I haven't had an infusion for 10 months, because of the issues with the stomach and the neuroendocrine tumor they found in my colon. I am only on 10mgs preds and I'm having lots of pain everywhere. I am hoping that the RTX infusion will calm all of it down. I really want off of these trouble preds.
    I'm wishing you all the best with your upcoming appt. I am learning to try to take one symptom at a time to work on. I really think sometimes we overwhelm the docs!
    Jana


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


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