Went to my newest Neuro... need opinions pLease

Discussion in 'Fibromyalgia Main Forum' started by meowee, Mar 7, 2007.

  1. meowee

    meowee New Member

    Hi friends,
    Yesterday I went to my second Neurologist. I quit my first one because he continually was pushing for me to have gamma globulin IVs and my reg. dr. said no way, and I agreed. I truly think this Neuro was doing some kind of experiment with GG and I was to be one of his guinea pigs.

    I have been having a lot of balance problems, falling down steps, (breaking leg), etc. If there is no hand rail, I am TERRIFIED. So, I go to Neuro 2 yesterday. He was very nice, but was mortified when I mentioned the GG IV neuro 1 wanted to give me. He said that is NEVER a good idea with Fibro or CFS.

    Neuro 1 also diagnosed me with pernicious anemia, and Neuro2 is also debating this, so I had blood work done.

    Now, Neruo 2 is hinting that I have sleep apnea. I have to go back in 3 month to see him. I see on his appt. cards, he is a "Sleep Specialist." Have I fallen into another experimenter?

    Why can't I just find a regular old plain Neuro to help? I think it is because none of them know what Fibro is and so they are all guessing.

    Also, Neruo 2 told me to take motrin instead of my percocet. HA! Motrin does nothing for me, the percs barely help.

    Please give me your opinions.

    Much appreciated.

    God Bless you .
  2. Shalala

    Shalala New Member

    ... that is for Neuro's. I went to one the other day and guess what he said to me? Sleep apnea. Oh phooey. I am going to a sleep specialist tomorrow at his referral. I cannot believe that all of our pain and suffering is caused by sleep apnea. AND he doubled my Lyrica doseage!!! I cannot handle the regular dose of that stuff. I am a mess! I am far worse now than I was a month ago. I don't think these DRs have a clue about FMS and so they toss out the good ole sleep apnea is the root of our problem excuse. I agree that sleep apnea can affect us negatively but it is not the root cause of all this suffering. I found out about a Rheumy here in my area that is supposed to be pretty good and familiar with FMS. Tomorrow after the sleep clinic deal I am going to my PCP and ask her to refer me to this DR (of my choice this time ... not hers). I have been messing around 13 years with this pain and agony and I am fed up with being treated like a YO-YO.

    Sorry about that rant ... this Neuro stuff really angers me.

    Good luck to you ((((((((( hugs ))))))))))
  3. obrnlc

    obrnlc New Member

    hi meowee, i really think that neuro's are the least educated bunch out there, unless there is a GLARING obvious problem on an MRi or scan, it must be "all in the head" because it isn't OBVIOUSLY in our heads! (in such a way that we are just all nuts, because as far as they are concerned, with near normal tests or without that GLARING mass, etc, if they don't SEE IT in our heads, what do we know?)
    we have no problem, because no one can SEE IT.
    Therefore, the simple solution is that we must get off of the drugs, get off of the disability and get back to work--we have NO problem and they just made that the official diagnosis.
    (I loved someones post yesterday about the "manifestation of the severity of my neurosomatic disorder"--made cards out of it-my shrink howled!)
    AND--to add insult to injury, their word, as ignorant as it might be, carries ALOT of weight with SSA and disability companies, all they need is one so-called "SPECIALIST" to say there is nothing wrong that getting a job and a life won't fix, and we are "up a creek" for any dis. benefits! (i'm trying to be polite in a public forum here!)
    I recently went to one for "restless legs", the VERY LEAST BOTHERSOME of my symptoms, but one that is "all the rage" now, and doctors actually acknowledge. She was the best out of 3, i think because i complained of an "acceptable" ailment, but i couldn't decipher her chicken scratch report (upside down on a scrap of paper-and they say WE are nuts!) to see if she believed anything i said or not. I am fully aware that are symptoms are not "credible" or "consistent", that is the problem, but no one gets it!
    Now, the fact that you have such DOCUMENTED balance problems (the falls, etc. (BTW hope you are recovering well), one would think that they might actually believe you, but at least your second guy seems somewhat concerned.
    And i'm sure that with TOXIC doses or ibuprophen, tylenol, etc. -you won't have to worry about the narcotics that actually WORK and give you some function. They are so clueless, that they would rather see you rot your liver out, but don't become dependant on narcotics--that would not be good for you. WHAT A JOKE they are, and what a long and nasty rant this is--sorry, ya hit a nerve on this one!
    Good luck to ya, hope you can find a good one (sometimes the fresh ones right out of med. school haven't lost all compassion and intelligence yet) Take care--L
  4. meowee

    meowee New Member

    I have been upset all day today from what that Neuro told me. I figure how important and concerned can he be if he made my next appt. for 3 months.

    He told me to NOT get addicted to percocet and try aleve. Why does he think I have a hiatal hernia now? I took aleve, motrin, asa, for 30 years.

    I have about had it with Neuro's also. They do NOT know as much as we do about FM.

    God BLess
  5. tngirl

    tngirl New Member

    I don't think sleep apnea causes our problems (although we definitely have sleep issues!) but they have done studies that show that when people are deprived of sleep, they suffer alot of the same symptoms that people with FMS have.

    I do have sleep apnea and use a cpap. If you have sleep apnea it is important to get it treated.

    I think I would give any doctor more than one chance unless he/she totally offended me or denounced the existance of FMS.
  6. sydneysider

    sydneysider Member

    I couldn't write here what I think about neuros. However, if you persevere, and push for what you want, you may eventually get some answers.

    I don't think a sleep test would do any harm, but would it do any good? I guess it depends on your financial situation.

    What is being done about your balance problem? Have you had your inner ears tested? It seems to me that your balance problem should be high priority.

    My experience is that neuros don't deal with fibro. They are normally looking for other things.

    Anemia can possibly be indicative of polymyalgia.

    Maybe you should see how these blood tests go, and see what direction neuro 2 is heading. Although, 3 months seams like a long time for getting blood test results. Why not ring and see if you can have the results sent on to your doctor?

    Maybe a neuro is not the type of specialist that you need.
    You may be needing a rheumatologist, and an ear specialist, or dizziness clinic.

    It can also be a good idea to keep copies of tests that are done, so they aren't duplicated every time you change specialists.

    I wish you luck....focus hard on what YOU need, and go after it.

    Best of wishes
    Robyn