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Thread: New here, panicking massively!

  1. #21
    When is your next appointment? The best thing is reviewing the results in person.

  2. #22
    It’s June 12th! That’s ages away. How am I gonna survive til then? I am in the UK, we have free healthcare here, I also have insurance, which I have used extensively until now. But I mean, I shouldn’t have to use insurance again, for god’s sake, I pay taxes and I should get a healthcare system that doesn’t let me get so much worse for nothing, right?

  3. #23
    Oh Jade, this is awful. You're right that you shouldn't have to use insurance under the circumstances, but I don't know how you can endure pain on this scale until June. If you went to another doctor, he or she could at least obtain your MRI for review - but I don't know how the system works where you are, you might have to wait just as long to see someone new. The only thing I can suggest is for you to call your doctor one more time and say that you're in so much pain that you're going to have to call someone else if they don't get you in on an emergency basis. If you get the answering machine again, leave a message that you'll need to seek help elsewhere unless you hear from them within a day or two. It's good you have insurance to fall back on, though of course the best thing would be to see the doctor who already knows your history.
    MS with cervical and thoracic cord lesions

  4. #24
    Quote Originally Posted by Bonnette View Post
    Oh Jade, this is awful. You're right that you shouldn't have to use insurance under the circumstances, but I don't know how you can endure pain on this scale until June. If you went to another doctor, he or she could at least obtain your MRI for review - but I don't know how the system works where you are, you might have to wait just as long to see someone new. The only thing I can suggest is for you to call your doctor one more time and say that you're in so much pain that you're going to have to call someone else if they don't get you in on an emergency basis. If you get the answering machine again, leave a message that you'll need to seek help elsewhere unless you hear from them within a day or two. It's good you have insurance to fall back on, though of course the best thing would be to see the doctor who already knows your history.

    Hey Bonnette,

    I managed to get my GP to chase the MRI for me, I told him how much I'm hurting and at least he said he'll do that for me, even though he won't be able to interpret the results. But at least I'll be able to compare the images with the previous MRIs I have and see if there has been a worsening of the situation. In the meantime, I'm having to lay on my stomach, which is the only way it hurts less. I asked the GP whether it could be a problem with my hip contributing to the pain, as it hurts a lot worse if I move my leg, and the part that joins the femur and the hip seems to click and catch all the time, and he said to wait until my physiotherapy session on Tuesday. So I'm basically gonna have to meditate this out I guess... I hope everything is good with you!

  5. #25
    Does anyone know if there is a way to distinguish pain due to the spinal cord from pain due to peripheral nerve inflammation? Cause I get my hips pretty inflamed from time to time...

  6. #26
    Jade, I'm so glad you got some help from your GP! Wouldn't your MRI images be accompanied by a written report by a radiologist? That's how it is over here, maybe it's different in England.

    Clicking sounds like a ligament problem. It would be a good idea to abstain from activity until you know for sure - wouldn't want to exacerbate it in an effort to make things better (I've done that so many times, it isn't even funny - trying to power through injuries doesn't work). Meditating it out does seem like the best approach, until you see either the doctor or your physiotherapist. I would also put a heating pad on that hip. Some people find ice packs helpful, either alone or alternating with heat (don't apply ice for longer than 15 minutes per hour). You can also visualize a soothing color like blue running up and down your spine and through your joints, that sometimes helps me. Won't hurt to try.

    Generally, cord pain is constant and burning - peripheral nerve pain tends to be burn and sting and be more localized, and it comes and goes. But that's one of the maddening things about SCI, there can be different presentations of these things. When you see your neurologist on June 12 (or earlier, I hope), ask him what he thinks about your particular pain levels and locations - make note of things like times of day and activities that seem to make things better or worse.

    Things are okay here, knock wood - took a little drive this morning and saw 3 deer with their fawns! Really brightened my day.
    MS with cervical and thoracic cord lesions

  7. #27
    Quote Originally Posted by Bonnette View Post
    Jade, I'm so glad you got some help from your GP! Wouldn't your MRI images be accompanied by a written report by a radiologist? That's how it is over here, maybe it's different in England.

    Clicking sounds like a ligament problem. It would be a good idea to abstain from activity until you know for sure - wouldn't want to exacerbate it in an effort to make things better (I've done that so many times, it isn't even funny - trying to power through injuries doesn't work). Meditating it out does seem like the best approach, until you see either the doctor or your physiotherapist. I would also put a heating pad on that hip. Some people find ice packs helpful, either alone or alternating with heat (don't apply ice for longer than 15 minutes per hour). You can also visualize a soothing color like blue running up and down your spine and through your joints, that sometimes helps me. Won't hurt to try.

    Generally, cord pain is constant and burning - peripheral nerve pain tends to be burn and sting and be more localized, and it comes and goes. But that's one of the maddening things about SCI, there can be different presentations of these things. When you see your neurologist on June 12 (or earlier, I hope), ask him what he thinks about your particular pain levels and locations - make note of things like times of day and activities that seem to make things better or worse.

    Things are okay here, knock wood - took a little drive this morning and saw 3 deer with their fawns! Really brightened my day.
    awwww I always love reading your replies Bonnette! that's super cool that you saw deers and fawns! you guys must have pretty awesome outdoors over there! so jealous
    yeah I tried training a lot as I thought I was doing the spine a lot of good, but that doesn't seem to be the case unfortunately, it was a hard lesson to learn eheh.
    my pain is not constant, it comes and goes, and it sort of changes places from time to time, so it feels really confusing! maybe it really is due to some hip problem! I guess we'll have to wait and see.
    thanks for the meditation advice! I also have an app, it's called headspace, it's really good! but I like the idea of visualising the colour going in my spine, as sometimes with headspace they tell you to do a body scan, and that's when I start thinking even more of the problematic parts of my body!

  8. #28
    Where I live, the human population is pushing wildlife out of their natural habitats, so the animals are coming closer to town looking for food - it's sad, and at the same time it's thrilling to see deer up close. Especially when they have fawns! There's almost nothing so adorable.

    The Headspace app sounds good, I'm going to look into that. I remembered something else that I used to do with acute injuries, it involves visualizing the area of pain and then progressively focusing on the spaces between bones, muscles, ligaments, tendons, connective tissues, and finally cells - seeing the anatomy as spacious spreads out and thins the pain message. There are some books and CDs about it, but you don't need them - it just boils down to visualization, no fuss or muss.

    It is incredibly irritating to be unable to pinpoint and analyze what's causing pain. I don't put much faith in doctors' ability to do that either, frankly, but I do give the experienced ones credit and the MRI is a great tool. I hope along with you that your physio appointment next week will be enlightening!
    MS with cervical and thoracic cord lesions

  9. #29
    Senior Member bigtop1's Avatar
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    Good dialogue here. Watching how things progress. Hang in there Jade2.
    I refuse to tip toe through life, only to arrive safely at death.

  10. #30
    A GP can't usually compare images- not trained as specialist or radiologist. The hospital does not call you results, they send it to the ordering doctor who is supposed to give you results. If an emergency or something surgical he would most likely call you asap. The radiologist compares with previous scan and writes his impression at the end of his report.. The doctor who ordered the scan, specialist,, can compare and tell you what to do. If you haven't heard, make an appointment to discuss the results.
    Are you on an anti-inflammatory such as Naproxen or Ibuprofen. Might just be inflammation which lasts for quite a while after surgery.
    CWO
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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