Discussions By Condition: I cannot get a diagnosis.

Discouraged from 30 years of chronic pain

Posted In: I cannot get a diagnosis. 10 Replies
  • Posted By: Anonymous
  • December 22, 2006
  • 05:15 PM

Hi, Ive lived with chronic pain in my left hip radiating down the back of my left leg for 30 years, when I was 18 I had surgery for a tethered spinal cord, and my pain improved somewhat, now in my 40s, over the past 20 years, my quality of life has been decreasing. Every time I see a neurologist, I get the brush off, I can't get in to see a neurosurgeon, I have had an increasingly difficult time with poor immunity. I have asthma that has become increasingly worse (advair 500 twice a day) every time I get a 'little' bug, it takes months to get well. I was not allowed to go on a trip last year due to my doctor being concerned that I would get sick. I have esophageal reflux disease and take nexium for that. I have extreme sensitivity in my hands and feet to cold, and they get tremendously painful. I am always tired. I can no longer work, I now experience very debilitating pain in my neck on the right side, radiating down the arm and up into my head. I often have quite a large swollen bump on my neck when the pain is bad. Does anyone have any ideas where I can turn? Am I seeing the wrong specialist?

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  • I am not sure what "I can't get in to see a neurosurgeon" means. Does it mean you don't have any in your area or they just have long waiting lists? If the neurologist won't refer you, ask your primary care doctor to. At least you could get the opinion of someone who is familiar with tethered cord surgery. I would insist on seeing a neurosurgeon.
    Anonymous 42789 Replies
    • December 22, 2006
    • 07:12 PM
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  • I should have been more clear, I live in a city of 1,000,000 people in Canada, my md refered me to a neurosurgeon who specializes in neuropathic pain, but she refuses to see me based on the results of an MRI I had a couple of years ago. ( I believe at the current time there are approximately 12 neurosurgeons in my city. Therefore, if you aren't dying, they do not see you.) The MRI was done on my lower spine, (this after the first booking where they did an MRI on my knee, not that there was a thing WRONG with my knee, but that was what had been scheduled!) I would have liked an MRI of my whole spine, but apparently that was not requested. Do I sound a bit frustrated?PJJ
    Anonymous 42789 Replies
    • December 22, 2006
    • 08:41 PM
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  • Very strange to have an MRI of your knee if that wasn't the problem. Before an MRI is done, the radiologist always reviews the reason for doing it. If your symptoms did not match up with a problem wiith your knee, I can't understand why they did the knee. It's surprising the radiologist didn't question it. I understand why the one neurosurgeon "won't see" you. She feels based on whatever information your doctor sent, she can't help you so it would be a waste of both of your time. Is your GP aware of your neck problem? Now that you have the problem in your neck, perhaps your doctor could refer you to a general neurosurgeon. I would not bother with a neurologist, they are not spinal experts. You'll probably wait months to see one, and then be referred to a neurosurgeon from the neurologist. If you don't seem to get anywhere, find another family doctor. I also live in Canada and yes, there is a shortage of GP's. However, all provinces have walk-in clinics, and the doctors there also practice as general physicians a person can see by request at each visit.
    Anonymous 42789 Replies
    • December 22, 2006
    • 11:42 PM
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  • Yes, my GP is aware of my neck problem, this isn't 'sudden' I've had it for twenty years. My biggest 'problem', believe it or not, is that when I see a specialist, they usually say, "Well, you seem to be coping very well..." Well, Yah, if I didn't I'd lose my mind! There is no point in moping, it's just that I'm beginning to get concerned about what my quality of life is going to be in ten years. As far as finding a new gp, I am able to track one down, but the draw back is retraining them as far as my immunity goes. I know my body, but as you are probably aware, most good gps are never keen on prescribing antibiotics, as well they should be. My problem with seeing a new one is that the next time I get ill, they will probably want to 'wait' it out, which will mean another trip to the hospital, deathly ill, (through several times of getting sick) until they finally realize, hey, this gal has some immunity issues. By then, I literally could be dead. I don't want to sound like some exaggerating lunatic, but this is my current reality. As far as the 'knee' MRI, oh yes, they questioned it after I pointed it out, but then insisted that if that was what my appointment was for, they needed to do it. I'm not kidding. Thankyou for the input on the neurologist. As far as seeing a general neurosurgeon, I am talking to my gp this week, and will see what she thinks. There is a two year wait to see most neurosurgeons in my town. I think at this point I may see about getting into one of the pain specialty clinics in town, which I have tried before, but in order to qualify, you need to see...wait for it, a neurologist! Aaaargh! I apologize if there is a sarcastic tone to this response, it is truly not intended. PJJ
    Anonymous 42789 Replies
    • December 23, 2006
    • 10:34 PM
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  • Have you looked into ehlers-danlos syndrome? Just wondering, because we have lots of pain & immunity issues.Helen
    Anonymous 42789 Replies
    • December 24, 2006
    • 06:39 AM
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  • Hi Helen, no I have not, I haven't heard of it, I will look into it though, thank you. What kind of doctor would diagnose this? PJJ Where would I find out more?
    Anonymous 42789 Replies
    • December 24, 2006
    • 08:23 AM
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  • Have you ever been checked for any food allergies? esp gluten
    Anonymous 42789 Replies
    • December 27, 2006
    • 11:43 PM
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  • No I haven't. I know with reflux that I have to avoid certain foods, and others to have in moderation...I absolutely cannot have chocolate for example, as just the thought of it makes me feel sick (as it causes a definite nasty reaction), caffeine in extreme moderation, and night shades (tomatoes, potatos, cucumber, broccoli, peppers, etc) I will ask my doctor about that tomorrow, thank-you. PJJ
    Anonymous 42789 Replies
    • December 28, 2006
    • 06:52 PM
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  • Hi PJJ,WOW! When (if) you find out what is wrong, let me know because I may have the same thing... I'm in my 40's, had c6-7 discectomy/fusion five years ago, then a scalenectomy and rib resection 2 years ago for thoracic outlet syndrome. I too have fatigue, sometimes overwhelming. . and arm pit. They say that it is probably caused by nerve damage. My hands and feet go numb (positional) and they get cold (freezing), and I live in Florida!! The list goes on blurred vision, pimples? in my nose and in my ears, COPD and GERD,... muscle spasms, trigger points, joint pain that comes and then mysteriously it's gone. Anyway I have returned to school to learn a new occupation but don't know how I am going to hold down a 9-5 again. I've been a year without health care (no job= no insurance). How is your mind? Like concentration, memory etc.? Good Luck with the Doc, DB
    Anonymous 42789 Replies
    • December 29, 2006
    • 05:07 PM
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  • My memory is okay, sometimes concentration is foggy, I attribute this to fibromyalgia 'fog' as I have been diagnosed with fibromyalgia, which is probably a result of the years of chronic pain. I have started a new treatment with Lyrica, it is at present, really helping, but I suspect over time will begin to diminish in benefit as so many of it's predecessors. I am thankful for it right now, though. I had an encouraging appt with my gp, she is going to contact aforementioned neurosurgeon, to get a new assessment as the last full one I had was approximately twenty years ago. The MRI that the neurosurgeon had looked at was three years old, as well, she did not have the complete history of tethered cord, as well as family history of Spina Bifida, MS, and Chron's. So on we go...I don't expect a cure but am hoping for perhaps some updated treatment that can improve my quality of life and current mobility. Will keep you posted. PJJ ps, I hope that the last responder gets the help they need. I cannot imagine having to work with this. I am truly blessed that I am in a position of not having that added burden.
    Anonymous 42789 Replies
    • December 31, 2006
    • 07:42 AM
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