Help Advice on Dr. visit

Discussion in 'Fibromyalgia Main Forum' started by momof471, Apr 11, 2007.

  1. momof471

    momof471 New Member

    I went to a neurologist today. Mainly for the electrical zaps and numbness and tingling, if they can also help me with headaches, that would be a bonus. I went in, spent two hours there. Only 5 minutes of that with the Doctor. His assistant examined me went over the paperwork, asked questions, etc. They have all my fibro records and stuff. He came in pushed up from the bottom of my sternum. Hurt like heck!!(All my problems began with my sternum) Then went on to tell me he has an opposite view on fibro as my Rheumy, and I needed to work on all these individual areas. He wants an MRI, sedrate blood work, me to see his psychologist, go to his physical therapist and see an ENT. I'm being seen by a psychologist already and I am SICK of pt especially if I have to drive 45 minutes to do it. I want the MRI, the bloodwork and the ENT, the rest I'm not ready for yet and If I do all of this I will lose my Rheumy! What do I do? I am flaring right now, after all of this. HELP!!!
  2. Rnclegal

    Rnclegal New Member

    There are pain points specific to patients with fibro which are used as definative points of diagnosis. How can a physician (especially a neurologist) have an opposite point of view to a rheum who specializes in fibro. It sounds to me like he needs some education.Electric zaps and headaches are some of the joys of this syndrome.

    Never forget that you are the consumer in this little scenario. I know how rotten you feel. I live it every day, but quite frankly, if a specialist said that to me and I was savy about fibro (which I am) I would run like hell the other way and request from my Primary a second opinion from a different neurologist....if you need a neurologist in the first place. And to have him have you repeat treatments you have already done and also suggest a psychologist (sets you up to be the "nutty patient" hypochondriac)

    Im getting tired so I guess Im getting blunt. As a health care advocate for many years this kind of stuff makes my blood boil

    Carolyn Bowen
    [This Message was Edited on 04/11/2007]
    [This Message was Edited on 04/11/2007]
  3. momof471

    momof471 New Member

    Rn: the neurologist said my rheumy looks at fibro from the outside in and he looks at it from the inside out. Something about biochemicals and stuff. I know my Rheumy looks at it from the Central Nervous System viewpoint. He didn't say to much that didn't go over my head though! Like I sai 5 min. with him tops! I'm not sure but I think the biochemicals are all that seratonin and stuff like that am I right? The assistant was talking about that and I got enough to say that I hope she was not saying this was psychological, because, the pain came first. I've always been high strung and had points of depression, but this is not what this is about. I am happy with my psychologist I see her every 6 weeks and I cant let out my frustrations, I do need that outlet, however, why do they want me to change to their's? I've been through tons of PT, I do stretching and things like that I learned in a pain rehab program, other attempts at physical therapy were horrible and it scares me! I'm thinking about faxing her my drug allergy list and letting her know, schedule the MRI, I'll make an appt with the ENT, I'll consult with their psychologist, but I want to wait on the PT. I want answer's for the main issues I went in there for, then we will go from there( I'll do the bloodwork to) Do you think they would go for this?
  4. momof471

    momof471 New Member

    Elaine: This is just a little scary, I've been through a nightmare with worker's comp doctor's. This feels like starting all over again. It was to much to process at one time! Some of their suggestions I have no problems with, I'm not ready for more intensive PT right now. Last year I went through a four week pain program, it helped and I still do the stretches, in January I joined the Y and go use the pool when I am able. I'm tired of this illness being my life! I want to learn how to be happy in my own skin! Does that make sense? I don't always want to be chasing the rainbow that will make me ALL better! I can do this for years, I already have a good start, and still be the same. I'm sooo tired.
  5. Engel

    Engel New Member

    Sounds like at least he is taking the trouble to do tests. Why would you lose your rheumy? I am not going back to this lousy Neuro. I am seeing a rheumy finally in a week. This Neuro writes it all off to sleep apnea. No MRI ... no bloodwork ... nothing.
  6. momof471

    momof471 New Member

    My Rheumy does not like his patients to see other doctor's for fibro, he does not want them to mess up what he does I guess. He also does not give narcotics, which to me does not really matter as I'm chemically sensitive. My psychologist and PCP wanted me to see neuro for the electrical zap things and numbness and tingling. I really need help with these headaches too, if I could get help for these, it would make things much more comfortable. My rheumy reall understands fibro, I don't want to lose that.
  7. momof471

    momof471 New Member

    My headaches are combos of tension, migranes and then the tmj pain. Sometimes I get these really weird sharp stabbing headaches in the right side, they usually don't last long. I have had headaches since 1993. They've gotten more intense in the past 3years. Does the grapeseed extract help this type of headaches? I'd be a new person if I could get rid of these headaches!
  8. 545

    545 New Member

    That sounds like a very tough situation. It certainly sounds like a neurologist would be helpful for your situation, but this one seems pretty extreme.

    Even though I come from the CFS-side of this forum, I do feel like I've learned about dealing with doctors. And, from what you wrote, there is a lot for you to be suspect about: First of all, a good doctor takes responsibility for treating you. It's fine to be referred to other sources, but these sources need to communicate between each other and some primary doctor (sounds like your rheum is the primary), with the primary being the executive. If the "team" doesn't have a "leader", you really are just floating on your own.

    I suppose it's possible - albeit unlikely - for a neurologist to take over the positiion from a rheumy. But I don't see how this neurologist would be able to lead the team - he spent 5 minutes with you and referred you to *3* different types of services? That's a lot of referrals for a 5 minute talk.

    And it's certainly fine that he disagrees with your rheumy's opinions, - disagreement can be very beneficial - but his opinion shouldn't result in your suffering - this is the sort of conversation that needs to occur between him and your rheumy.

    To me, this doesn't sound like someone I would trust to coordinate an army of expensive doctors: He was in a rush, he did not bother to consult with the doctor who had referred you, and he wanted to totally change the projection that your rheumy had already set forth. What if, for instance, the physical therapist disagrees with him? Would you go with the physical therapist? Or what if the physical therapist told the neurologist he "had a different opinion"? Would the neurologist be cooperative with him?

    Anyway, I hope this can help you think about your situations and the choices you have to make. One recommendation might be to ask the rheumy what he thinks; and / or to write a letter expressing these sorts of worries to the neurologist. A letter might delay things, but it would certainly get him to stop, ponder, and think about whether he is being ethical.

    Best of luck
    [This Message was Edited on 04/11/2007]
  9. momof471

    momof471 New Member

    I am not going to let this neurologist disrupt what I've done so far. My primary did refer me to him for the -electrical waves' Iposted about before and the tingling and numbness on my left side. If he can help my headaches great. As of right now I am happy with my Rheumy and so is my primary. Overall I'm happy with my fibro treatment that is in place. I am happy with my current psychologist. I really don't want to change all of this right now. So, I am going to fax a letter saying I agree to the testing and so forth but not treatment for fibro as that is not what I was referred for. He insisted on all my pain records before he would see me, that is how this came up. His assistant was very nice, but I was amazed at the small amount of time he spent with me and he didn't talk about why I came. Who knows he may think the electical waves and tingling and numbness are fibro related and if that's the case he should have said it, I think so anyway, but my primary and psychologist wanted me to be checked to rule out other issues. We will see what they say!

    Thank you for all of the responses! These doctor's are so much part of our lives with these illnesses and you all know what stress can arise when things seem to go haywire!

    God Bless