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Bad experience at the neurologist and now I'm at rock bottom

Hi again everybody.

If you don't know my story you might want to read my other posts before this one. But in short, I'm 19 and have severe lower back pain and sciatica down my legs and into my toes. I've been to the emergency room twice and seen numerous doctors and have had tons of tests done but still have no answers. I've also had a hard time getting any doctors to listen to me because I'm so young...

Anyway, as you might know I had trouble getting into see the neurologist but my pain was so severe that my mom threatened to call the patient liaison if they didn't get me an appointment sooner. Well that appointment was today and it was one of the worst experiences of my life.

The first thing the doctor did was yell at me and told me I was taking too much pain medication and that they were causing most of my problems. He told me all about how pain killers were habit forming and all that stuff as if I were an idiot. Both my mom and I tried to tell him that I HAVE to take the pain killers or there's no way I can go to class but he wouldn't let us get a word in. Also I am not on that much medicine AND all the medicine I take was prescribed at that same hospital.

He looked at my MRI and didn't see anything and implied that I was faking it! I was in tears...literally I was bawling.

He checked my reflexes and told me I was "faking" my reflexes too.

He had me walk on my toes and it hurt the back of my knee. Then I walked on my toes again and it didn't hurt. He yelled at me because it hurt one time and not the other. My pain is really hard to explain and he wouldn't even let me try to tell him what I was feeling. All he did was talk down to my mom and I. The whole time he implied that I was faking the whole thing.

He told me that I need to buy soft shoes not "fancy" shoes like the ones I had on. I had on brand new Nike's that I bought because they actually made my back feel better.

He kept yelling at me saying that there had to be one traumatic incident that is causing my back pain and he didn't believe my mom when she said that there wasn't! I couldn't even talk because I was crying so hard.

Then he said I should stop taking all my pain killers and only take Neurontin. Well the Neurontin has given me awful side effects. Again he didn't listen to me and yelled about how I shouldn't take painkillers.

He said I should go to physical therapy and I tried to say that I already went and all it did was hurt me...but he yelled again! I couldn't believe it. He insisted that I go.

And the thing that made my mom and me the most mad was that he ASKED us if I wanted and EMG. Of course we said yes but he acted as if I didn't need one.

It was an awful experience. I have never been to a doctor who didn't believe me or who treated me with such little respect. When I went to the doctor today I was actually excited because I thought this would be the first step towards diagnosis and recovery. Instead I ended up in tears. I feel hopeless now. I'm worried I will spend the rest of my life in pain and I will continue to miss out on my college experience. I'm lost. I really don't know what to do next. If a doctor can't help me, what else is there I can do?
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13

Comments

  • of the age scale...40 years of back trouble and my experiences with neurologists have not been fulfilling.
    the person to see is a spine surgeon.
    not that he's going to operate but he will give you better advice....
  • I've already seen a spine surgeon and I did everything he suggested and nothing worked so he referred me to the neurologist.
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  • which toes or toe hurts?
    any mention of bulging disk in mri?
  • Sorry you have had such a horrible experience today. But, do not give up. Sometimes it can take a number of visits to various specialists before you find one that is able to help you.

    Are you attending a large university that has a medical school? If so, that might be a good place to start. Otherwise, you need to look for a fellowship-trained spinal specialists. This can be either an orthopedic spinal surgeon or a neurosurgeon who devotes his practice to issues of the back and spine. You might call the ortho floor of a hospital near you and ask the nurses which spinal specialist they would go to if they needed some type of back surgery.

    Do you have the radiology report from your MRI? If so, you might want to copy it here in case someone can spot something that might provide a clue as to the source of your problems.

    Generally speaking, when you have sciatic pain, there is usually a problem stemming from one of the lumbar nerves, often L4, L5 or S1.

    There have been a number of young people on this board who had had trouble having their back issues taken seriously. I guess this has to do with pain medications, as doctors seem to be very paranoid about prescribing pain meds, particularly to young people.

    One further suggestion I have is to contact a children's hospital, or look for a pediatric orthopedic spinal surgeon. They are used to dealing with kids with real problems and would take your problems seriously. If you are in a small town, you may have to travel to a larger city to find the type of specialist you need.

    Don't give up...unless your pain magically goes away!

    xx Gwennie
  • Read your recent post,sad to hear you had such a bad experience. :( I love my Neuro,so guess I was lucky, he makes me laugh even if I am hurting. I researched about him first, you know some people just don't click, not saying anything bad on you. I've talked to people that don't like my Doc, but many,many more have liked him,sooo who knows? My advice is check back with spine surg. for another Neuro or do some research on your own. I had bad experience with Ortho docs (2 knee surgeries,different docs),also check with family M.D.,he may be able to help. You have to have confidence in your Doc and before any surgery,get 2-3 opinions and research, research... You are in the right place for info and help. Wish you luck!! >:D< :H
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  • Sorry to hear you had so had such a bad experience with the neurologist. I know it can be tough to find a doc who's willing to help and believes that you're in so much pain at such a young age. I understand because I'm 18 years old and had a hard time finding a doc who believed me and was willing to help me.

    My back problems started when I was 16. I had herniated L4-L5 and L5-S1, along with spondylosis, stenosis and scoliosis. Long story short, I tried everything before surgery and nothing helped. I finally had surgery 4 months ago and I feel great.

    I know it is very difficult to deal with this at such a young age where you should be going out with friends and having a good time. But hang in there, hopefully soon you will find a doc that will help ya. If you're having leg pain it's mostly caused by a bulging or herniated disc pressing on your lumbar nerves. Like Gwennie said it would help if you post your MRI report if you have one.

    We are not doctors but we have personal experience and maybe we could tell you what we think what it's wrong with your back. This is a great site for support. Hang in there Jessy, you're not alone.

    Take care, Dan
  • I'm so sorry you were treated that way, especially by someone you had such high hopes of being able to help you. Find another neuro ASAP, is what I'd recommend.
  • I am sorry you had such a bad experience with that doctor. I am sure the stress and disappointment of your appointment isn't helping the pain. Try your best to let it go and use your energy to find another doctor. Just like everyone else has already said find a doctor that just deals only with spines.

    I have faith that you will find someone who will help you. Keep researching. You may want to start a pain journal to document what activities make your pain increase, your pain level, actions taken to relieve the pain, etc. I hope you find a doctor that will help you very soon. Keep us posted.
  • sunny1966ssunny1966 VIRGINIAPosts: 1,362
    Sounds like you've ran into one wonderful neuro! Not! Everyone has already given you the best advise but I just wanted to say I'm sorry you're dealing with this. I would say I can't believe that doctor treated you like that but actually I can. It happens far to often these days. A 'normal' mri doesn't mean there isn't something wrong. I hope you can find another doctor soon. Good luck and take care,
    Debbie
  • =(( Sorry to hear you had such a miserable experience with your neuro. I was thinking maybe you should try to see a physiatrist -- maybe your primary care doc can recommend one for you. Usually a physiatrist will perform the EMG test. So, you may get to see one when you get the test.

    Keep us posted -- sometimes it takes a little time to find the right doctor. Sending youa >:D< .

    Take care,

    Judy
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