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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?


  • 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.
  • 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
  • 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: 1,385
    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,
  • =(( 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,

  • My issues showed up on a CT scan.

    This is one persons opinion, someone who may have been having a really bad day to begin with too. Dr's can have lapses in judgement too. It is up to us to either accept that opinion or it we feel that it does not make sense to our inner self, keep going and find an answer from another Dr and see how it sorts out.

    I do know that some of the meds - have side effects that mimic pain. As a matter of fact - one med that I was on for more than 2 years, had a 28% chance of CAUSING Lumbar pain.

    Now since that is the issue for me, WHY would someone prescribe the med to me? So - be critical of what you are taking and look over all of the side effects of the meds you have presently. Then take the print-outs to your pharmacist and ask to speak to them abouth what they know from other patients. I ahve found them to be very helpful in sorting out which negative effects are possible, based on the patients that they see and not just the drug Company stats.

    Your education about this- will help with the fear of all of it too!

    Hope your doing better
  • Just for clarification: we all throw terms around without using them accurately, sometimes.

    When people write about a "neuro" on this board, they are almost always referring to a neurosurgeon. Jessey's bad experience was with a neurologist -- an entirely different specialist with different training.

    Neurology deals with the diagnosis and treatment of all categories of disease involving the central, peripheral and autonomic nervous systems, including their coverings, blood vessels and all effector tissue, such as muscle. Neurologists treat diseases like Alzheimers, Parkinsons, stroke, migraine, and perform testing such as EMGs and nerve conduction studies. Spineys usually go to a neurologist for testing, and, rarely, for pain management. You would not go to that specialty for a diagnosis of a spine problem. Neurologists do not do surgery.

    Neurosurgery is the surgical discipline focused on treating the central and peripheral nervous systems and spinal column diseases. Generally, neurosurgeons specialize in the spine or in the brain, but do not try to do both as each is so complex.

    Orthopedics is concerned with conditions involving the musculoskeletal system. All orthopedic surgeons complete a residency in orthopedic surgery and are then qualified to do things like set broken bones, replace joints, etc. With additional specialized (fellowship) training, an orthopedic surgeon qualifies to work with the back and spine, and becomes an orthopedic spinal surgeon.

    It should be noted that some orthopedic surgeons perform simple spinal surgeries. I personally would not want to go to one. I would only want the person with the highest level of training working on my spine. It is up to the patient to know what type of doctor they are seeing for a specific problem. Do your research!!

    It is so important to select your specialist carefully. Understanding the differences in specialties will help in making that selection.
  • I went through the same thing! After 1.5 years of the most awful pain, and seeing Dr's who just blew me off, and the problem just not showing up on my MRI, I found a Neurosurgeon who listened, and cared. I was labled a nut case, it was all in my head, I need professional help, BLAH, BLAH, BLAH! I am sure you know the speech by heart!! So, I did PT and all the conservative measures, which made things worse, could not sit for over 1 year, and could only lay down, or stand for short periods of time. I was totally disabled. Then, I saw a Neurosurgeon who looked at me, had is partner take a look, and I did a EMG which showed damage at L5 S1. They decided to go in to take a look. It was a 3 hour surgery, and he told my husband it was a mess in there. I had a injury in Dec. 2007. No one would listen when I said all the pain started then. One moment I could run 6 miles, and next, my life was forever changed. I had a piece of bone sitting on the S1 nerve root, and bone on the L5 nerve root, and by the way, I could walk on my tippy toes, and heels. Not well, but I could do it, and my reflexes were good!!! I just kept looking for help. YOU know how you feel, so keep getting opinions until someone HEAR'S YOU!

    I had a Laminectomy at L5 S1, and a Foraminotomy at S1, and a Mesial Facetectomy at L5 S1. It has been 8 months, and my recovery has been slow, but I have 85% of my life back. I can drive, do housework, grocery shop, and GO TO THE MALL AGAIN!!!! Sitting is slow, but coming back. I can laugh again, and work in my garden, and flowers, and do the treadmill. My plans are to be able to run again. Not this year, but hopefully next!!!

    DON'T GIVE UP! Just keep looking, and get another opinion. Go to a Neurosurgeon, and make sure he is Fellowship trained!! Get the BEST! Keep us updated, and will keep you in my thoughts. sweetpotatoe57
  • Jessey, I've not had a good experience with any neurologists, I've seen a few. I would recommend seeing a physiatrist or a pain management doctor. (My PM doc is actually a physiatrist.) You may be better served as they can deal with your symptoms.

    The neurologists thought I was exaggerating my reflex tests, I now close my eyes when they are doing those tests and they're surprised how some places I'm hypersensitive and others depressed.

    I've posted to others to shop around and find docs you like. When you find them keep them. You will end up with a good team. It is frustrating though dealing with the doctors you don't like and time consuming. On top of that, your insurance may make it difficult as well. If that is the case, call your insurance and ask for a case manager. You'll have much better luck.

    I hope you are able to find a good doc that can move forward with helping you out!

  • I would never go back to a neurologist for my back troubles.

    I had an MRI of my lumbar area, my PCP said it was normal, mild bulging disc. My neurosurgeon took a look at it and listened to my symptoms. He knew immediately what the problem was. A slippage of the vertebrae over the one below, spondylolisthesis. Tried conservative therapy, which rarely helps with this condition, and had to eventually have surgery.

    Do find another doctor!! My personal recommendation is a neurosurgeon at a spinal center.

    Best to you,

  • It really burned my you know what when reading what you went through. I'm so sorry. Nobody deserves to be treated that way.

    I hope you do find a pain specialist or neurosurgeon to figure out what is going? Nothing's worse than being in pain with no answers. I'm sorry you have to be in pain so young and I hope they get you better so that you can go on with your life. Take care
  • Thanks for all the support. I don't know what I would do without this website!

    But some information that some of you have asked:
    -I already saw an orthopedic spine specialist for several months and then he told me there was nothing he could do.

    - I do go to the University of Iowa and they have the best hospital in the state and that is where I've gone to see all my doctors for my back (ortho, neuro, etc)

    - I've had an mri, ct, x-rays, and epidural injection. Everything looked normal and the injection didn't help.

    BUT my mom called my regular doctor and he said he was going to get me into the Mayo Clinic in Minnesota where a team of doctors will work with me and figure out whats going on.

    So after such a bad day yesterday, the Mayo Clinic news made me very happy. Except, that I'll have to miss class to go.
  • Glad to hear - I search documents - on these issues and this site and Mayo were ones that kept giving me the best info.

    The forum here rocks!

  • :D Aren't moms miracle workers! :D

    Don't worry about missing school -- hope those Mayo Clinic guys/gals kick some "pain" butt! I have a good feeling about this Jessy and I KNOW that you'll get some needed help.

    Hang in there honey -- everyone wants you better real soon!

  • So sorry to hear you had a bad experience at that drs visit.
    I would have gotten up and walked out with a few choice words at the first tear he made my child shed! All that crap is as bad as a dr saying you don't look like you hurt, does that mean he's got xray vision or something?
    So glad to hear you have another option lined up!
    Good luck and keep your chin up!
    Hope it's a more pleasent experience for you.
    Some drs have the worst bedside manners and are so heartless it's absolutely
    Unexceptable, period!
  • Good to hear that you're going to be checked at the Mayo! Please keep us posted. Sending positive vibes your way that they will find an answer....

    Best wishes to you,

  • I really hope they can help you at the Mayo clinic. Honestly the first step is to just find someone who is willing to listen to the whole story and find the clues there which can lead to a proper diagnosis. In the end though the key is to just keep trying till you find the right doctor. You are too you ng to go through this type of stuff.

    I went to a neurologist and honestly he was a nice guy but the lamest of the bunch. Basically he said just muscular...please. I have been through now every type of doctor you can see...in the end I just want the proper diagnosis and so should you.

    I really feel talking to these doctors that they really do not understand pain. Everyone gets their day and so will they.

    BTW, if you take the emg, they will finally understand that you are in pain. That is what happen to me. I explained I was in acute pain but until they had to shoot electric through my body and some silly meter showed them it they could not believe. After that test they were all treating me differently!
  • I'm very sorry to hear of your horrible experience with the neurologist, Jessy, it sounds unbelieveable! Maybe you should bring up a complaint against him- sounds like a right arse.

    So I take it you have had the MRI and it didn't show anything major? Well that is good and bad... of course you are not faking the pain and it is awful for that man to suggest so, but at least there is no evident spinal abnormality and you don't have a major disc injury hanging over you.

    I'm not sure what to suggest, but I saw another thread just now about positional MRI's - i.e. standing or sitting. These can show what your spine looks like under load - maybe it will look different and help diagnose your pain. Though I'm not sure how easy it is to get one.

    The only other thing I can suggest is a muscular problem though it sounds unlikely... as far as I know there's 4 major causes of sciatica - disc herniation, spondylo (slipped vertebra), spinal stenosis and piriformis syndrome. Piriformis syndrome is where the nerve is trapped by a muscle - the piriformis - which is situated in the buttock and the nerve runs through it. It can mimick the symptoms of a disc. Though I'm not sure how painful this syndrome can be. Also, are you still having problems with urination? I was worried when I read about that symtpom in your other post - it sounded like cauda equina syndrome (CES) to me.

    Jessy, can you tell me about what feels more painful? Does it hurt much more to bend forward? If you are sitting, try raise each leg at a time straight out in front of you (gently) - does it start to hurt more? Do the same lying down, raise a leg straight up. Does it hurt? Do you feel tension in the back? Does bending the knee remove all this tension?

    Also have a look at your back using 2 mirrors if you can (one in front, one behind). Just stand normally and can you see any crookedness? Any involuntary bending to one side? When I first herniated a disc in my back I was totally crooked to one side - I had antalgia, a postural reflex where the body bends away from the pain. Though if you have pain in both sides, I'm not sure how it would look! But do so for me. It may be a subtle asymmetry.

    Please keep us informed about what is happening, I'm 19 too and had back problems for what seems like eternity- it is awful. By the way did you have any injury or accident of any type? (I'm assuming no since the neuro insisted you 'had to have one'). I really hope you can get to the bottom of the pain very soon and start getting better. Take care.
  • University hospital in Denver (part of Colo University) is supposedly good too, I had to tell the representative of the neorosciences department that the MRI department appears to be incompetent. They couldn't understand the MRI order and had to have some big pow-wow of doctors to figure out exactly what pictures to take because of the diagnosis they want to rule out (or confirm). It was comical to hear the head of the MRI department call me to basically say they weren't incompetent and just making sure they were doing what the neuro doctor wanted. It's something that a doctor doesn't see but maybe once in their career. Anyway, long story short, after a week I was actually able to get the MRI scheduled.

    Sounds like your mom wasn't satisfied either! Just keep the same attitude and never give up, you may have many poor doctor experiences. I know I've had my share!! I hope the Mayo clinic is just the ticket for you!
  • I had a disc fragment that was wrapped up in a nerve. It was undetectable on my MRI's. I had severe pain and difficulty walking for 3 years. I even had a doctor shrug at me. No one had a clue! I kept looking until I found a doctor who'd listen. He did a exploratory surgery and found the fragment. I was able to walk again but was left with permanent nerve damage. We know our bodies and we must fight for our lives! Never give up. If I had given up, I'd be in a wheelchair now. I hope Mayo Clinic will give you the answers you're looking for and that you get some relief soon.
    Faith M

  • Hi - I was diagnosed with Piriformis syndrome about 3 years ago. I tried all of the less invasive therapies ie; phyical therapy, massage, etc. I finally received 3 steroid shots that helped a lot. I wasn't pain-free, but could manage with Aleve. The pain just recently came back with a vengeance! I had the same 3 injections and then went on to have 2 more injections. They were both Phenol injections. A week after the last phenol injection I was in extreme pain and continue to be now, 2 weeks later. The Dr. has put me on an anti-inflammatory and a muscle relaxant. I am taking those plus Percocet for the pain. HELP ... does anyone have any answers? The pain is unbearable when in a seated position.
  • Hi there, my back pain started when I was 16 years old so I have been in your shoes. It took me 10 years before I found a doctor who would believe me... so just hang in there! You're on the right track, and kudos to your mom for backing you up! You are truly lucky to have her support.

    I agree that you should see a pain management specialist. If possible, go see a different neurosurgeon. Get 12 different opinions if you have to. Just keep trying... you will find one that you get along with, I promise. It just may take time.

    Feel free to send me a PM, I totally know what you're going through. Unfortunately there are too many doctors out there who think their *** doesn't stink, if you catch my drift. Ignore them and move onto the next.

    Oh also, some advice from my uncle who is an orthopedic surgeon. When I told him how much I hated PT and felt like it wasn't helping... he reminded me that it needs to be done at MY pace. If something really hurts, tell them to stop. Of course, try to push yourself as much as you can... but if it really crosses the line you bet you can tell them to STOP and they need to listen.

    EDIT: I didn't realize this thread was from September. I hope the original poster has gotten pain relief since then. TWEDE, instead of posting on this old thread, starting your own would allow people to better help you.

  • Hi - I have never been on a forum or started a new thread. Please inform me how to do this.
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