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  • 12trikaj
    Sorry for all CAPS in the topic but that really peed me off...I went to the ER last night in excruciating pain in my back from inflamation, (sorry if it is mispelled), and I asked the Lady Doc to see why I was in so much pain, could it be from the MS inflamation, she said MS IS NOT PAINFUL, yes everybody, you heard me correctly, which means the medical community has a lot to learn....P.S. She would not even check, just handed me a script for pain meds!! Wouldn't you all think that if your nerves are being eaten away at it would be painful if the MS ate through the sheath????
  • Seeker
    Doctors are not taught pain control and so they don't have any understanding of it. This is just another example of it! Maybe if they all lived just one day with it they would be more understanding and more helpful.

    I had a first appt with a dr and while waiting, told the nurse that I was feeling like I was about to have a seizure (I have epilepsy) she said if you are having one just come out in the hall and ask someone for help and she closed the door! I figured if the dr didn't hire a nurse better than that then I didn't want him. I don't know if I had a seizure or not. 

    Where are the good ones?
     
  • Marja
    Sorry to hear that you had this experience, although this does not surprise me.  I have only been officially diagnosed with MS for 3 weeks.  And until my recent experience with my AMAZING neuro, and team he put together for me, I had a less the desirable experience.  When I think back to the 6 separate times that I had been to the doctor where tell tail signs of MS were occurring and NOT one Doctor caught it, including a neurologist, and referred me to someone who could look into it.  My MRI shows many lesions for unmanaged MS for 7 years. 

    Its proof that we have to take control of our care and don't take no for answer until we find a Medical professional that is will to sit down and listen to our needs and concerns, then take action.  If not, leave the office and keep looking. 

    -V
  • kyheartstrings
    My doc attributes every problem I have to old age.  At 42, when my back would hurt so bad from trying to cook, or walk around the grocery store, he said, "you're getting older, and that's what happens".  Now, I'm 49 (102 in dr yrs) and I cannot take the pain any more.  Family dr. gave me tramadol, but it makes me sooo sick.  But this past week, the pain has been so bad, that I chose throwing up over dealing with it. 
  • NupesBabyGirl
    OMG what the hell doctors get in this line of work to help people! I know what you mean I have a 3 ring binder with medical information in it copies of my MRI and things like that so when I go to the ER and have a doctor tell me things like I can throw it in their face. Also, I would be finding out the name of the doctor who treated you and write a letter to the hospital telling them what happen. I'm sorry you deal with that I hope you feel better soon.
  • kychic63
    I'm sorry for your experience. It is all too familiar to me. Years ago before I began standing up for myself to doctors and others in the medical profession, I let them hand me a script and simply take it. It took me going through 7 neuros before I found one with some sense. Like my husband says (paraphrasing) "They don't all graduate at the head of their class. Some of them are #156,157..." They all get a degree. Sometimes we just get the bottom of the barrel instead of top notch. I was misdiagnosed with kidney infections a few times in the ER, when in fact it was an exacerbation. I do take a pain medicine now but also muscle relaxer and exercise, even a small amount, does help in the long run. It's the same with meds as it is with doctors. If one doesn't work, there is always another one. Getting enough rest is also helpful with pain management, although I know sometimes pain keeps us awake.
    Be well,
    Nancy
  • belstar
    I can definetly identify with your pain. I called my Nueroligist office because I was having alot of pain on my back and spine for 2 days and the recepitions had his nurse call me and she told me it was not retlated to my MS and had I fallen or hit something to cause the pain. I researched the pain on the MS webstie and found it is called MS hug. I could not get in to see my doctor till my set appointment at the end of the month. Sometime I just want to close up and just bare the pain only it hurts to much. I also find it hard to explain the pains in my legs and spine and arms to my own family, I think they believe I am making it all up somethimes.
  • clarinetmom
    I'm with you there! My PCP said the same thing, then did some research and apologized! Good dr to have on my side! My neuro won't prescribe narcotics for pain, though. I understand because they really are only for short term use, and ours is chronic. It makes sense, I guess.
  • Michraf
    Not very bright. Hopefully she will read some information on MS.
  • Therese2
    i CAN,T BELEIVE PEOPLE DON'T THINK I SHOULD BE IN PAIN, NOT A DAY GOES BY WITHOUT PAIN! I'M MISERABLE! CAN"T STOP CRYING!
  • Bailee
    I go and see a pain specialist in my area.  My neurologist referred me to them, and they have been very good for me.  They know different types of meds that work together to help ease the pain, but it is a work in progress.  You need to work with the doctor and let them know what works and what doesn't, and they tweek  the meds to make the pain better.  Neurologist are good at neuro stuff, but they don't know the pain management stuff like an actual pain specialist.  I would recommend that to anyone having pain, and this doctor never told me that MS doesn't cause pain.

    Bailee
  • 12trikaj
    Not very bright. Hopefully she will read some information on MS.
    Michraf,

    Yeah Right, do you know she actually rolled her eyes at me when I told her that it is something like 60% of people with MS have pain, she did not believe me, you know, I'm sure, doctors think they know everything and God Forbid you try to tell them something...Please read my other post because I really want to apologize for not being around especially to you because you have always been there and I basically fell off the map:(
  • Michraf
    Michraf,

    Yeah Right, do you know she actually rolled her eyes at me when I told her that it is something like 60% of people with MS have pain, she did not believe me, you know, I'm sure, doctors think they know everything and God Forbid you try to tell them something...Please read my other post because I really want to apologize for not being around especially to you because you have always been there and I basically fell off the map:(
    No need to apologize. I am not around much either. I can't stand docs that think they know everything. Maybe they have a survey or questionnaire on your care from that er. You could have a field day with that!
  • 12trikaj
    I'm with you there! My PCP said the same thing, then did some research and apologized! Good dr to have on my side! My neuro won't prescribe narcotics for pain, though. I understand because they really are only for short term use, and ours is chronic. It makes sense, I guess.
    My neuro prescribes all my medication needs so I guess that means I am fortunate !!
  • ldoty
    No need to apologize. I am not around much either. I can't stand docs that think they know everything. Maybe they have a survey or questionnaire on your care from that er. You could have a field day with that!
    After all recent hospital stays, I have received care hospital care followup calls.  Most were positive except for the last  one.  I was in intense head pain (a double migraine), intolerant of heat or noise and no pain meds worked. So they put me in a room where the other occupant kept the heat high and had noisy visitors.  My husband threatened to remove me from the hospital.  With all the pain and nausea a nauro made me get up and spin around until I threw up. My roomie moved out and for a while it wasnt bad and that neuro did not visit again.  They tried a different pain med.  Then I got a new roomie who complained of the cool room.  I was about ready to pass out when I developed atrial fib.  I was placed in cardiac ICU which helped with noise and heat but I got a cardiologist with zero bedside manner whom I could not understand.  So when I got the call rating my hospital stay I let them know in a very nice, yet FIRM way of my complaints.  They seemed interested and the cardio unit was definitelly interested in that cardio.  So hopefully it does help to speak up.
  • Dion
    I am a couple years younger than you, but suffer from the same back pain.  Another MS friend in my area - Chicago-land - has a similar problem and saw a local pain specialist.  That doctor recommended an epidural and Keri claims it worked very well!  My father did the same thing for his sciatic issues and was pleased with the results.  Food for thought.
  • Mike18
    Age has absolutely nothing to do with what you are feeling, however, the Tramadol can actually increase your pain and interfere with your sleep; which is most important in helping to control your pain.
    There are many options to help control the pain of MS.
    Have you heard of low dose naltrexone
    Hope you are doing better soon.
  • kyheartstrings
    None in my area (Northern Kentucky).  The doctors around here give DRUGS to the druggies, but ppl in real pain are treated like garbage.
  • KIM_9
    good post...MS is VERY painful...I have knots in my calves the size of large gumballs, every muscle and joint in my body hurts even the BOTTOM of my feet hurt....I have three ruptured discs in my back, and a severly inflammmed SI joint which is in your hip, I have had those for years, way before my MS DX a year ago...anyway, I cannot get a Nuero to work with me. I have been through 4 in the year sonce my DX....they read my intake history, see the pain meds I take...and blame evrything on that...the fatigiue (never had the first 7 yrs on meds) the cognitive issues, also never had before MS, and the newest thing...seizures......"maybe your just taking too much narcotics and your confused"...um hello!!! I have been taking same amount of pills for almost 8 yrs and all these things started after my DX...I have been out of work for a yr......worked just fine before. They just judge and send me away! all of them!! (the Nueros i mean)

    UGHH!
  • mags4050
    related yet a different twist.  Yes we have pain.  Yet when I have to reveal I have MS  cause I can not walk  someone always tell my_______ has  MS  they tell me  they are fine now.   dismissed I feel.  I fine my self trying to describing we are all different.  First  we are invisible then we hear  it is not so  bad.  Glad  it is good for all who it is good for   My blessing to  them I do not want to be disabled and do not   what to explain and be dismissed.

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