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  • Neurologist says no, body says yes.

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    Old 03-26-2003, 04:34 PM   #1
    kat721
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    Post Neurologist says no, body says yes.

    I went for an evaluation on the MRI I had done last week.
    The Neurologist says that definately I have Migraines
    but the little white spots in the deep white tissue don't mean anything of significance.
    The Neurologist has taken me off even Asprin
    and wants me to up my dose of xanax take a higher dose of trazadone that makes me nauseated and see a Psychiatrist for the neck and body pain that he says
    should not exist in my body.
    My body says there is a real problem going on. The Nuerologist says I'm just depressed and the reason I get insomnia is because I am depressed and need psychiatric care.
    Hmmmmmmmmmmmm.
    I dunno.
    I've been thinking it's the horrible pain that wakes me up and makes me fidigety.
    I've been in one really bad flip me on my head car accident and numerous falls off a tall horse
    and various other accidents along the road of life.
    I used to scuba dive before I became ill with another illness but even in the last few times of diving I had trouble with the 65lb tank making leg numbness as little as 30 feet underwater.
    My bladder is always irritable and when the gynecologist liberated my colon from my ovary and pelvic side wall last year we thought that maybe my bladder pain would end.
    It didn't.
    I've had two other surgeries since then for complications and both the colon and bladder function are still having their difficult days.
    The Neurologist says that the minimal degenerative disc changes, the disc bulge and posterior annular fissure at L4-L5 is slight and means nothing.
    I reminded the Neurologist that my tail bone sticks out and that I wanted to know if that in any way affects the pain I get going down my leg on into the little toe. Not to mention the way it gets sore when I sit and the way it will bump up against things and get irritated by my blue jeans.
    Once again I was told that nothing in my spine would cause the problem and that I was just tense and should take Xanax every 4 hours instead of Asprin like I have been dearly wanting to do. He thinks I gave myself rebound headaches from Asprin.
    He says there is a minimal bulge at C5-C6 but once again, It's me with the pain bee in my bonnet.
    Theres some non specific straightening in my neck and
    as to why I get pain and numbness down my left arm and will often drop things......well........yep, it's me,
    with my depressed problems and depressed behavior as I sit there massaging out the spasm in my arm while he says that the psychiatrist is definately the way to go since I'm figity.
    So anyone here with experience or thoughts on these kinds of spinal readings?
    I've never seen a neurologist before.
    I've always handled my back and neck pain with with chiropractic and body therapy and many many alternative therapies.
    Amazingly up until this last year and a half I've been able to keep things pretty functional.
    I had to have help saddleing my horse and getting my scuba gear on because of pain issues but by and large I've done well for having a 20 year old neck and head injury.
    Right now my pain is at the point that I don't dare put a 65lb tank on my back and go jumping in the water.
    My big quest here is to hopefully get some of my post illness life back.
    I guess I should have asked the neurologist if he thought I was good enough to go diving.
    I have to wonder what his answer would have been.
    I'm guessing he'd say.....Diving? What? You Crazy?
    forget the Psychiatrist appointment. We're having them come to pick you up. That's suicidal.
    Well, my husband says we are finding another Doctor.
    I have an appointment with the Physiatrist next week.
    In a way I do know what I need to do, but the big NO, negativity trip is something that always throws me off my center of knowing what is right for my body.
    Any ideas on what questions I should be asking?
    If it's not my spine and tail bone then would the psychiatrist be the next step?
    I have to wonder and ask.
    I haven't gone to the chiropractor since all this mess started.
    I haven't felt that Chiropractic would be the right modality for the way my pain feels.
    I don't think Acupuncture would be right either since I remember a time when I hurt less after flying off the horse when he got spooked. The Acupuncture needles burned my lower back and left a festering scab that took months to heal.
    I've also had a problem with my jaw in the last few months. Since October. Pops, hurts and gets stuck.
    I have to take a big breath and push it hard to get my mouth to open.
    Thaks ahead of time,
    kat

    oooops, one more thing, my Endocrinologist says my hormone levels are way down. He's been trying to get them back up to support brain functiuon.
    I asked the Neurologist if maybe THAT would be contributing to my foggy brain and mental slowness.
    Well, by this time we all know THAT answer
    so I'll save the punch line.
    I'll probably be ranting for days.



     
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    Old 03-26-2003, 05:11 PM   #2
    BWL
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    Hi Kat,

    Whew, aren't you the busy one. I had a series of medical issues a few years ago and each one seemed to complicate the next and the whole process of diagnosis and treatment was blurred beyond belief. I was fed up.

    Like you, I had multiple physical issues and some suggested a few in my head, I disagreed. Since you are open to alternative therapies I would recommend to you, what saved me. I had an initial 4 hour visit with a holistic physician and we put everything in its place and over a period of 5 months "we" made me feel better than I ever had. My doc is an MD, but practices a healthy mix of eastern and western medicine. You need someone who is going to listen to you and that you can trust implcitly. It may be difficult finding someone like this, but if you are in or near a reasonbly sized city you can find someone.

    Speaking from experience, the combination of trazadone and xanax can be quite sedating. I would not, if I were you, get an every 4 hour xanax habit going (nice as it is). It is very difficult drug to cease using.

    My other word of ree advice is that if you want to go diving you should, but flip your tank on underwater so you won't have to deal with the weight of your equipment.

    I hope your rough road smooths out a bit for you.

    Bruce


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    [This message has been edited by BWL (edited 03-26-2003).]
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    Old 03-26-2003, 09:49 PM   #3
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    Kat,

    Definitely get a second opinion. DON'T take Xanax every 4 hours http://www.healthboards.com/ubb/bang.gif

    Xanax is highly addictive, and even in the psych field we steer clear from it. Your neuro sounds like a quack. I had a rheumotologist tell me the same thing once. Rudest man I ever met. Told me it was all in my head even though I had an elevated sed rate. Did not go back for follow up and saw another doc who was willing to take care of my problems, sans the head shrinking.

    Psychiatry is good, in that it can help you deal with the stress of chronic pain, but it won't fix your back. Have you seen a neurosurgeon or spine specialist?

    I would start looking, girlfriend.



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    Old 03-27-2003, 08:49 AM   #4
    kat721
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    Thanks so much you guys, Great thoughts as I am much more clear this AM.
    I decided that Trazadone is not the medication for me
    and took my self off of it last night.
    Just made me too nauseated and dizzy and out of sorts.
    I've had a conservative prescription for years of Xanax. I have been at the same intermittant level for years and when I'm feeling well I'll sometimes even go weeks with out it.
    It definately helps my bladder problem of which the Urologist says my bladder is just small and when the colon gets difficult or my back hurts the bladder gets spastic. Even with reflexology and mediatation it just needs help.
    I agree on that 4x a day business with Xanax.
    I've gotten Xanax as a therapy dose 3x a day when I've had an accident because it does help my muscles be more quiet.
    But as soon as I recover from the injurys (mainly from the horses) I simply don't need the Xanax very much.
    I used to take it for my Tachycardic heart too.
    But then one day I decided that I probably needed a little more advanced cardiac care and after the Cardiologist put me on the maximum dose of Toprol to control my pulse I've needed the xanax again, one bit less.
    So lastnight I opted out for a xanax at 1/2 the dose the neurologist recomended and took 2 Asprins, went to sleep and woke up with much less pain.
    My old family practice doctor who retired used to prescribe me Fiorect for my other pain.
    That too I only took intermittently about the time I would get a nauseas headache.
    It worked great for both the migraines and body pain for years and when I didn't need it I didn't need it and I simply wouldn't think about taking it.
    Since one or the other of the many three types of triptans we are now trying does a sufficient job of handleing the migraines I probably only need something in the osteo arthritis department to handle the joint pains since Asprin has pretty much been working fine
    from June to October when my Jaw suddenly spasms and triggered one huge long enduring migraine.
    Yes, I came to the conclusion last night after talking to one of my friends that the Neurologist is a jerk.
    I don't think I need a psychologist to talk. I have plenty of friends who do counseling and I live a fairly holistic life so I've got "issues" covered.

    Post>>Psychiatry is good, in that it can help you deal with the stress of chronic pain, but it won't fix your back<<

    Yes, I agree. I know a lot of people who have sorted out the confusion of life with the help of a Psychologist.
    However, I don't think my feelings of edgyness are a total mind problem. I think my pain makes me absolutely nuts though. Sometimes I just reach my tolerance level and have a melt down. But as one of my practitioner friends recently told me, that I am probably having so much neck pain that I simply don't have anything on a very physical level left to cope.
    Like I was telling my family, if I need a psychiatrist it would be to figure out if I have a mental illness going on like being bipolar or something.
    However, I'll let my OTHER Doctors make that assessment and not the one who got mad at me who bluntly told me, that I had to choose between having my headaches gone, or having my colon work right every day by taking that one cup of half decaff and half regular coffee as part of my morning constitutional.
    His reason was that coffee is as evil as fiorect and gives people bad headaches. Which I can agree with that to some extent. However, since I've already had emergency surgery for my colon failing just 20 days after my hysterectomy, (last year) I told the Neurologist that I would have to pick my colon because an impacted colon falls quickly into the life threatenting category. I was already warned by a number of gastroenterologists that minding my gut is a huge important thing because of external adhesions and all that crinking.
    So of course, I'm sure that might be where the whole Doctor patient relationship began to go down hill.
    Me being anoyed that he had not listened to me when I tried to convery the problems that led to my impaction and him being anoyed with me telling him his business.
    Yes, obviously, he was not the right Doctor for me.

    Post>>Have you seen a neurosurgeon or spine specialist? <<

    No I haven't. I've been tied up with the Endocrinologist and Cardiologist for months.
    And before that I was wrangling with the 5 Gynecologists to get them to recognize the damaging
    endometriosis/adhesion problem that was binding my innards to the point I could barely walk with out a spasm.
    So It's been a matter of extremes in the priority department.
    Can you tell me more about the spine specialist?
    Is that the category I look into, or does it have another name?
    I'll be seeing a Physiatrist/Doctor of Physical Medicine and Rehabilitative Sports Medicine
    next week. Do you know how they do with spines?
    I've also never considered a Neurosurgeon.
    Are there any specifics I should look for in that field?

    Post>>My doc is an MD, but practices a healthy mix of eastern and western medicine. <<

    Yes, I do need an MD with an understanding of complimentary modalities.
    I have a lot of organic conditions that require regular medical maintenance and monitoring.
    That balance of walking with a foot in both worlds and knowing when one modality is needed with respect to each new situation is really extremely important.
    We moved last summer so basically I had to start all over again with Doctors and building a whole new life foundation. Getting settled and figuring out a life in a new city has been a little bit challenege.
    So far I'm still comfortable with my Cardiologist and my Endocrinologist. My Endocrinologist is particularly good at diagnostics and he was initally was the one who recomended the Doctor of Physical Medicine who I am seeing next week.
    The family practice Doctor is the one who recomended the Neurologist. I guess I won't be asking him again who he likes to work with.
    The last Gastroenterologist he refered us too didn't call back or fill maintenance prescriptions on time.
    Not good.

    Post>>My other word of ree advice is that if you want to go diving you should, but flip your tank on underwater so you won't have to deal with the weight of your equipment.<<<

    That's really a great Idea. My husband mentioned that a little while ago but I'm still sort of worried about the levels of intensity pain going one.
    I'm not sure if being under water and getting that wonderful benefit would help or if the tank would still compromuse the back.
    I hurt at my neck and shoulder and whole left arm.
    I don't think that's going to trigger that problem.
    My upper thoracic which didn't get addressed is a concern though and my lower back and that tail bone mess.
    I have a weight integrated BCD because I couldn't take the pressure on my pelvis even underwater. And that made a huge beneficial difference.
    Generally, Diving did help control a lot of pain.
    It also kept my BP and Pulse in a great zone with much less medication than I am now taking.
    I still needed a fair bit of HBP help but my levels would stay at 110/70 and I had a pulse that managed to stay under 90 even when I had pain.
    I'm thinking of starting in the pool any way when my head and back don't feel so fuzzy and painful.
    It's been a little too long being Dry Docked.

    Thanks again for your help and thoughts.
    It helps to rant and sort.
    kat



     
    Old 03-27-2003, 07:46 PM   #5
    winged phantom
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    Hi Kat,
    I'm sorry to see you here on this board, meaning I'm sorry to see you hurting so much. It is awful to be such an active person and so have to forego the activities you like to do. My injury was from a horseback jumping whiplash-type incident, and I've never been back on a horse. I hate that!

    I was going to say that I don't like your doctor too much; I think you could do better. For surgery options you would either go to a neurosurgeon (most of us on this board are going to one) or an orthopedic doctor; if you see an ortho doc make sure he specializes in the neck. I think necks are in a different league than lower backs, but that may be my bias.

    Sorry I can't be more helpful right now, but it's getting late. Don't be a stranger, Kat; this board has lots to offer.
    wr
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    Old 03-28-2003, 10:04 AM   #6
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    Thank WR, Yes, it's been a real challenge lately.
    Interesting phenomena last night.
    I've had this realization in my head for a while but always get distracted into other areas.
    So last night I was really frustrated and nauseas and dizzy and just generally feeling really bad.
    Thank goodness my Endocrinologist gives me Phenegan to help out with the big nausea times.
    So last night, I decided that I would give my self some asprin and a phenergan so that maybe I'd at least get some sleep without sitting up with the toilet for the whole ordeal.
    So I took my asprin, and my phenergan and this morning
    I woke up with no headache. A little pain, but no big horrible monster pain.
    Gone. Poof. Done. Run it's course for the moment.
    My family practitioner called and he's sending me out some Vioxx to the pharmacy.
    The Orthopedic Doctor was packed up until late next week but another Doctor in his practice will see me on monday.
    My husband has been good about helping out with body work so I'm doing better.
    The Family Practitioner let me pick my own Neurologist and I went with a suggestion from one of the nurses at the Endocrinologists office. The Family practice Doctor wants me to continue with a Neurologist because I do get Migraines and he thinks I need something clarified there. Unfortunately the Neurologist I want can't see me until the end of April but I think I can wait now. The main thing that needs clarification is the medication I am given for the migraine.
    The cardiologist said that he would rather I stay on the migraine formula the Endocrinologist prescribed for me than be on the 3x delivery of Imitrex because the last time I used the injection it gave me chest pain.
    So I think I'll last until monday when we can get a second opinion.
    The original Doctor that I wanted to see does a specialty in necks.
    But since I am seeing the one Doctor in practice with him I'm hoping that I'll still get the benefit of the knowlege somewhere down the line. The practice seems to be pretty focused as a unit.
    So, with the Phenergan, what do you think about THAT?!?
    I've noticed this before.
    Before I had the first surgery I had so much pain I would have to go to the ER and they would give me Demerol and Phenergan I.V.
    For a while that would actually kick my pain out for a long time. Sometimes a couple of months and then it would still be less pain for a few months after that.
    That's when I would get living life done.
    Tell tale sign, that I now know is just as the Endocrinologist thought..............my face and skin clears up when I am out of deep pain.
    When I am in deep pain the skin looks really bad.
    I break out, I get rashes, my skin flakes and peels.
    When I am in moderate to little pain, my skin does not react badly.
    So while I have somewhat noticed this for a while, this time it's very clear. And so is my face this morning.
    Phenergan. Who'd of thought.
    Also, even though Phenergan is notoriously bad for slowing down the gut, I had a huge BM this morning taking the pressure off my lower back.
    So generally, people ike me don't get Phenergan because of the history with bowel problems.
    Phenergan is supposedly the worst.
    But for me, the one time phenergan makes my stuck and getting ickier bowels move.
    I am at a loss for explanation.
    Or maybe it's just a coinsidence of timing?
    kat


     
    Old 03-28-2003, 10:32 AM   #7
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    post>My injury was from a horseback jumping whiplash-type incident, and I've never been back on a horse. I hate that! <<

    So what happened, did you fall from a high place or get thrown off something in motion?
    That had to be some pretty intense motion.
    OUCHIE!!!!!!!
    How are you doing now? I saw where you are getting surgery. When will that happen?
    kat


     
    Old 03-28-2003, 02:48 PM   #8
    winged phantom
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    Hi Kat,
    My "accident" occurred while I was demonstrating not only superior idiocy but extremely bad horsemanship skills and miserliness. I've always wanted to ride, and when I finally got the chance to learn, I was "saving" money by borrowing a helmet- one that was too small. And while I was learning to jump, I was having trouble looking up and forward, rather than down at my horse's withers. With the helmet riding high on my head, its weight would snap my neck down when the horse's forelegs hit the ground after the jump. I felt electric sensations, but I did not speak up, and I continued doing it. I was certainly old enough to know better, too. "Live and learn too late" should be my motto. That was in 1989 and necessitated my first diskectomy at C5-6.

    So you're on aspirin and phenergan? I'm glad it worked for you; just make sure it's enteric coated so you don't tear your stomach up. Isn't it sooo nice when something works for your pain? What a relief!

    You have so many things going on with your body that it must be very hard to deal with. I know for the past 18 months or so I've rarely gone a week without at least one doctor's appointment. That is just not me! And this is not the way I want to live my life, but sometimes we have little choice! So with all the things you have going on, I'll bet you have even more of a blizzard of insurance forms and receipts, etc http://www.healthboards.com/ubb/bang.gif

    I don't know too much about phenergan; I see it's also a sedative and an antihistamine. I know I got reglan for anti-nausea 6 weeks ago after my abdominal surgery, but it's a GI stimulant, as well as a sedative. One of the facts about it that I got was that it's given to diabetics to prevent nausea after meals. Interesting. Well, as long as the phenergan doesn't plug you up and is also helping you, go figure.

    To get off the board subject here: I'm just very discouraged that I have not bounced back very well after the surgery. Most of the time I don't even stand up straight yet. I walk at the speed of molasses, all hunched over like I'm 80 years old. So after I get my neck fixed (April 9- a three level ACDF), I will not be at all surprised if I have to do something about adhesions again. I don't regret the surgery, but I will have to seek out one of the very best adhesiologists. I will not put up with more years of pain than I already have endured when there is something that can be done. Even if I have to go abroad.

    Hang in there kat; slow but sure wins the race, eh? http://www.healthboards.com/ubb/wow.gif
    wr
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    Old 03-28-2003, 11:16 PM   #9
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    Post>>I will not put up with more years of pain than I already have endured when there is something that can be done<<

    Well, I can certainly relate to that whole way of thinking.
    My Family Practice Doctor sent me out some Vioxx.
    Works just fine but I have to be careful with my left arm (the one that gives me trouble)It still feels a little iffy.
    Since the Neurologist interrupted my Elavil to see if he could make a change to trazadone I can feel my regular pain all the more.
    That small dose of Elavil did wonders for the intensity of my pain for a good number of months.
    Elavil interrupts neurological pain (that the Neurologist insists is not there.)
    Even though I''m ouchy I'm not pulling out my hair from the pain tonight so I'm going to just stay off the Elavil until after I see the orthopedic doctor.
    I don't want to mask any symptoms.
    So the vioxx has been sufficient for tonight.
    No one has ever prescribed that stuff for me.
    I was pretty surprised. I won't be taking the phenergan unless I get really nauseas. With phenergan it will really knock out the nausea for me in a couple of days. For me, nausea and deep pain travel together.
    I amazed I'm not plugged up with that stuff too,
    but actually, the pain last week was shutting me down
    and I guess the relief just helped everything function.
    You know how it is when you finally get a moment to relax and breathe.
    I actually do best with anti-inflammatories and antispasmodics. Besides, my fussy tummy and head won't tolerate much in the way of narcotics.
    I told my husband that if I keel over from a heart attack with the vioxx in a month, then he should look into all those legal things swirling around right now
    and see if there's any basis to the uproar.
    My thinking is this, If I don't get some decent pain relief I'll probably die of a heart attack anyway or have a stroke. Pain it self will mess with your health and your energy life source.
    So, might as well make the attempt at feeling better and take the most good days out of life.
    The way I see it so many people mess with their health drinkin and smokin and carrying on with who knows what for fun, that it can't be anymore of a risk than bad health habits or driving on a super highway at rush hour or eating french fries and a diet coke everyday.
    So, I'll do all the Holistic stuff I know and wrangle with those Doctors and maybe I will surface with some good answers.

    Oh that's was a terrible accident you had!
    I misunder stood.
    I thought you had an accident that was compared to a riding accident.
    But you HAD the riding accident.
    That's even worse! Thank goodness you still can function. Way scary those jumping accidents.
    Don't beat yourself up too much about the accident.
    Even really good riders have accidents & get very hurt.
    Even riders with proper fitting gear.
    Yes, one should ALWAYS make sure the equipment fits and that you, the horse, and the event are all at the same level of learning, but the fact of the equine matter is this, it's a darn risky sport and we all know the risk and the challenge when we even enter a barn. You know, it's odd, I started riding for physical therapy for my structure problems and the whole experience really helped to give my lower foundation strength so it could support my upper structre better. And lo and behold it DID!
    I got so much better for a long while.
    And even with precaution I still had my share of injuries.And even with the injuries I was lucky enough to still get up on those horses and ride.
    I'm just lucky I have ridiculously strong bones.
    It's my musculature and joints that suffer.
    Then and later.
    Odd how the hysterectomy did my structure in more severely than sports injuries.
    Once they removed the innards there was no where for everything to solidify for months and as I see it, all the support foundation just started falling apart.

    Well that hunched walking business does not sound good at all.
    What do you do for physical therapy?
    Are you taking anything for addressing the adhesions from the inside of your body?
    Suppliments? Stuff to help work with the problem from the inside?
    It's rarely a cure but it does help with range of motion.
    I like Dry Unestrified Vitamin E.
    I eat lots and lots of olive oil too.
    Just like the Tin Man, we need our bodies oiled
    to get around.
    Yes, slow and sure. That's where it's at!
    kat

    P.S. Brain Fog stinks.



    [This message has been edited by kat721 (edited 03-29-2003).]

     
    Old 03-29-2003, 12:16 AM   #10
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    Kat,

    I can relate to the GI problems. I have gastroparesis which improved after having surgery. My PM wanted to give me Trazodone. I told her no. Then she gave me Sinequan, just as bad for the gut. Took it for a few days, and then couldn't eat anything. Haven't taken it since.

    I use Surfak. Have to take it every day and it works even if I am taking pain meds. Have to be really careful with intestinal probs. You were right to choose your gut and yes, your Neurologist is a jerk.

    Hope your visit with the ortho goes well. If they specialize in the neck, you should be okay. I prefer a NS, because they deal with the nervous system all the time. My NS has a good reputation. My PT said he has excellent technique, and he has a good bedside manner and is actually accessible.

    Good luck and keep us updated.




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    Old 03-30-2003, 10:20 AM   #11
    kat721
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    Lea, The Vioxx the Family Practice Doctor sent
    out has made a huge huge difference.
    The flashing lights finally stopped and I'm much more mentally clear.
    Yesterday I had about 5 hours of real clarity
    before pain started kicking in again.
    He sent out the big dose. which was rough on my tummy
    for a day.
    I'm better now.
    Too bad that stuff is so bad for the heart.
    I also had a huge BM this AM which had not happened
    fully and completely for a few days now.
    It's terrible what pain stress will do to the body.

    Yes, I take stool softeners too.
    I also get Miralax.
    I try to alternate but I too need every day help.
    Seems that once the gut has had the trauma it tends to
    stay prone to irritability.
    After my hysterectomy I had terrible times with my colon. It never settled down.
    A friend who is a nurse told us that the Colon was probably trying to go back to the position it had been in for so long while it was trapped up against the pelvic muscle.
    And sure enough, it did.
    When finally, my Enodcrinologist went in to take a look in January, the colon had indeed reconnected itself to the pelvic wall only higer up.
    My diet has to be pretty specific too or I suffer.
    My Physical Med Doctor is tomorrow.
    I'll let you know what happens.
    My neck has cracked so much this morning while stretching that he'll probably say...and you are here because?????? I no longer feel like I'm having an emergency. If it were not for moments of relief like this I don't know how I would cope.
    Actually, maybe I do know.
    I'd probably just have a heart attack because it always eventually goes into the tachycardic heart.
    I really wish there were better answers.
    kat


    [This message has been edited by kat721 (edited 03-30-2003).]

     
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