What Does A Neurologist Do?

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by catgal, Dec 6, 2002.

  1. catgal

    catgal New Member

    I have FM, CFS, Degenerative Disc Disease, Rheumatoid and Osteoarthritis, severe Asthma & Allergies. I have no insurance. I've seen an orthpedist for a year who did absolutely nothing for me. His only treated me for the DDD and said there was no such thing as FM. I terminated his service. I see a PCP who has treated me with 10mg Oxycontin 3x's a day and 10mg percocet 3x's a day for breakthrough pain. However, after 17 months the 10mg oxycontin is no longer effective, and the relief the percocets give me only lasts for 4 hours. It's time to re-evaluate my meds and probably increase the oxycontin which I dread doing.

    I have been thinking about seeing a neurologist, but I don't know how expensive they are or what it is they do. Is anyone seeing a neurologist or know what they do? How do they help? I would appreciate any information anyone can give me. Carol....
  2. catgal

    catgal New Member

    I have FM, CFS, Degenerative Disc Disease, Rheumatoid and Osteoarthritis, severe Asthma & Allergies. I have no insurance. I've seen an orthpedist for a year who did absolutely nothing for me. His only treated me for the DDD and said there was no such thing as FM. I terminated his service. I see a PCP who has treated me with 10mg Oxycontin 3x's a day and 10mg percocet 3x's a day for breakthrough pain. However, after 17 months the 10mg oxycontin is no longer effective, and the relief the percocets give me only lasts for 4 hours. It's time to re-evaluate my meds and probably increase the oxycontin which I dread doing.

    I have been thinking about seeing a neurologist, but I don't know how expensive they are or what it is they do. Is anyone seeing a neurologist or know what they do? How do they help? I would appreciate any information anyone can give me. Carol....
  3. karen2002

    karen2002 New Member

    Carol---I saw a neuro/ 6 appts. ---wasted $160.00 an appt. Herein lies the problem. The neuro I was seeing, believed, and told me, "People diagnosed with Chronic Fatigue and Fibromyalgia, are really depressed people, and need to be treated for depression.." I saw many other specialists who held the same beliefs. I received treatment from NONE.

    You will not find help from FM/CFS from these practioners.
    Finding a Doc who Specializes in our disorders is the answer. I finally have--and am making progress.
    Most Fibro/CFS specialist can treat all the other illnesses you listed in addition to Fibro, as they are common in we Fibro patients.

    There are neuro's and many other types of specialists who DO treat FM/CFS.
    The most important thing you can do, is call the receptionist of likely candidates, and ask, how many Fibro/Cfs patients does the Doctor treat? If the answer is none, to little....run.
    Also, I have no insurance, and my Good Doc lets me pay on a cash basis, treating, my Fibro, Chronic Fatigue, Degen.Disc, Spinal Stenosis, High Blood pressure...ad infinitum.
    Karen

    [This Message was Edited on 12/06/2002]
  4. catgal

    catgal New Member

    Karen~~I truly appreciate your quick response to my question as I feel lost in a medical maze. I have been a major flare this past week, drug myself to work, and feel completely wiped out. My back hurts so bad that my range of motion is extremely limited. And it seems one illness flares up--they all flare up. I don't like being on the narcotic medications due to the physical dependency, but at present they are the only thing that keeps me going, keeps me working, keeps me functioning.

    I am desperate to find alternative resources of managing the chronic pain. I spent a fortune on the vitamin routine, diet, spent another fortune on acupuncture which helped, but there are no acupuncturists where I live, have done physical therapy, and numerous other alternative therapies to no avail.

    My mate mentioned to me about going to neurologist as his friend went, and the neurologist helped him alot. I realize each case is different, but I no nothing about a neurologist or what they do, and the expense all comes out of my pocket. Thanks for your reply. Carol...
  5. allhart

    allhart New Member

    i have been seeing a neuro off and on for four years
    he belives that fm and cfs are a mental disorder if your going to spend the money find someone who spealizes in fm and cfs,
  6. j9miller

    j9miller New Member

    that a neurologist does much at all ... my opinion. When I went to my SS hearing a neurologist was there as a professional witness (there side). He was a big jerk. He first said that FM exists BUT that he felt it was over diagnosed and anyone pulled off the street could have tender points. That alot of "women" complain too much and need "help". He went on to say that NO ONE could be in pain all the time and that pain meds were over prescribed. He said that my TMJ that I have had 2 surgeries for and need another (joint replacement the last time) did not effect talking and that the jaw was really not used for much. He said that my ruptured discs in my back should not cause much pain (even though the neurosurgeon at the hospital said I had lost all reflexes in one leg and some in the other and the nerves would always cause radiating pain). He was a BIG TIME LOSER. I would recommend a rheumotologist or pain specialist instead.

    Janine
  7. CAgirl

    CAgirl New Member

    Neurologists don't do a whole lot for FM patients (my experience). I would see a pain specialist. You are on some strong meds. and a pain specialist is use to dealing with those types of meds. In my experience neurologists want to give you everything but narcotics.
  8. LisaMay

    LisaMay New Member

    I was fortunate enough to find one that was/is OK. Really all he did was determine that I did not have muscle and/or nerve damage. He fully believes in FM. He gave me my referral to my rheumatologist. I did need to see him again for headaches. He had a brain MRI done on me, which was normal. Sometimes it is good to eliminate the middle man, especially when money is tight. It does cost a good amount of cash to see one. It might be best for you to find someone who specializes in FM. Good luck. Lisa
  9. catgal

    catgal New Member

    Thanks so much for all of your replies. Seems like the general consensus for seeing a neurologist is not to waste the money--and I definitely don't have any money to waste.

    I was just hoping to find some alternative to taking narcotic pain meds as I have been on them for 17 months now, and the 10mg oxycontin is no longer effective, and I have been in alot of pain & discomfort for months now. I have been so reluctant to increase the oxycontin that I haven't talked to my physician about it, but pain and disability is getting to the point that I can't function, and though I only work part-time, I still have to work to keep my head above water financially and pay for my medical expenses. I guess I will just have to talk to my physician about upping the oxy because as it is right now--I can barely get around. My back hurts so bad that when I lay down, I have to use my hands to lift my head up.

    As you all know, it's extremely difficult to have a chronic, painful, disabling illness that no one can see. I saw a guy in the grocery store the other day who had a broken leg, and everybody was going out of their way to help him....and there I was in so much pain I couldn't think, had to leave my grocery basket in one place and bring the grocery items one by one and put them in the basket because I couldn't push the basket around. And as strange as it may seem....I envied the guy with the broken leg and cast on. Everybody was helping him out while I was as invisible as my illness. That guy will have his cast off shortly and be good as new and able to do all the things he enjoyed doing. While I will continue to struggle to carry a box of cheerios to my basket. Yesterday at work my fibro was in a bad flare, my back hurt so bad I wanted to scream, my range of motion was severely limited, and my hands were red, hot, and swollen from a rheumatoid arthritis flare, and I couldn't hold a pen to write my progress notes--but my supervisor just told me to be sure they were done before I left work that evening. If I would have had a cast on my writing hand, he would have told me not to worry about it.

    These are lonely illnesses, and though I do things to keep my spirits up.....sometimes I get so weary from it all that the only thing that keeps me going is the will to keep going.
  10. pam_d

    pam_d New Member

    I think it is valuable to see a neurologist IF you have a suspicion that there may be something more going on than with you than the diseases you mentioned, and therefore you'd like testing for things like MS, lyme disease, etc.---if you are certain of your dx, and not looking for MRIs, spinal taps, etc, then I feel a neurologist is of little value (unless you have the good fortune of knowing an FM-knowledgeable neuro who treats this DD skillfully. Otherwise, it seems like a waste of time and $$ for you.)

    Since you do not have insurance and want to make every healthcare dollar count, have you considered a pain specialist (first making sure that they do treat FM patients) since they would certainly evaluate the meds you're on for their effectiveness & may suggest a new protocol?? Just a suggestion...

    Hope you find relief, Catgal!

    Hugs,
    Pam
    [This Message was Edited on 12/06/2002]
  11. karen2002

    karen2002 New Member

    I differ in opinion....in regards for the pain specialist. My problem lies in the fact that we are again just dealing with a specialist in a certain area---one that manages pain. Don't get me wrong---if my Doc wouldn't address pain issues...I would run to a pain specialists---BUT just to manage the pain. I would expect no Fibro/CMS therapies.
    Unless it was a rare one that could keep abreast of all new research on FM/CFS AND Pain Management at the same time.

    The problem that I see, thought, is that A Doc who specifically treats FM/CFS, is more multifaceted. They are aware of and have treated ALL symptoms of these disorders.
    The know the systems that are down, and reparation needed using conventional meds, supplements, and natural. They are more intune to sensitivities, allergies, yeast overgrowth, endocrine system problems, hormonal imbalances, sleep disorders, pain meds for these disorders,---the list just goes on.
    I think very important treatment could be missed by just seeing a pain specialist--who will probably JUST treat the pain. There ARE treatments available to us--that do improve this condition. That is the same reason I would rule out a "believing" neurologist. We need a full body approach.
    Karen
  12. catgal

    catgal New Member

    The FM/CFS I've had for 35 years has been difficult to live with, and I have to work as I am my sole financial support. The continual aching and exhaustion, memory loss, brain fog, and bouts of bumping into everything and dropping things has severely affected the quality of my life, and I am 53 years old.

    However, the degenerative disc disease with 3 discs gone, a shattered vertebrae, and additional back problems is an unbearable pain. My only source of relief is narcotic drugs, and after 17 months on the lowest dose of oxycontin--I find the oxy no longer effective and have been living in misery for months now. I need to have my meds re-evaluated and probably increase the oxycontin. The meds also help with the aching of the FM and the pain & stiffness of the osteo and rheumatoid arthritis. But, I hate depending on narcotic drugs for the rest of my life, and I guess I am looking for a "silver bullet" that will allow me to live as pain free as possible without the use of narcotics. And I wondered what other various practioners had to offer. Someone mentioned a psyiatrist or something like that--but I have no idea what they do. Have no insurance.

    The 10mg oxycontin that I take 3x's a day became ineffective back in April, and I have suffered so much with the back pain that I can barely function, can't stand up straight, dont' sleep well, lost my appetite, and have lost 35 pounds in the last two months as the pain has become more intense. I don't know whether to just give in and ask my physician to increase the oxycontin or try some other health provider that may offer some other effective means of controlling the pain that would also work on the FM and arthritis. I'm starting to feel desperate. I appreciate your help and suggestions. Thanks, Carol...
  13. kadywill

    kadywill New Member

    twice a day with PRN Oxy IR every two hours as needed for spinal stenosis and herniated discs and arthropathy, my doc increased the Oxycontin to 20 mg. in the a.m. and 10 mg. in the p.m. and continuing the Oxy IR every two hours as needed for breakthrough pain. On the 10 mg. BID, I was requiring up to 5 Oxy IR daily. But with the 20 mg. in the a.m., I am only taking 2 or 3 of the IR's....
    My doc says he will increase the Oxy according to how many IR are required until I have NO breakthrough pain whatsoever at any time. He wants me to continue my daily walking as tol., massage, water therapy and much rest for my FMS. Carol, we are blessed to be believed.
    Love,
    Kady