MRI of Brain! Nothing wrong, still in PAIN!

Discussion in 'Fibromyalgia Main Forum' started by UPK5, Jan 24, 2006.

  1. UPK5

    UPK5 New Member

    Hi Fibro Friends!

    My ENT was frustrated by my chronic sinus infections. I have been on every antibiotic in the book. I use so many nasal sprays and yet I still suffer regularly. He suggested I be evaluated by a neurologist to make sure there isn't any thing else going on in my HEAD!

    So, I went. The neuro, was so surprised I had never had an MRI of my brain and ordered one immediately. I got approval so quickly too. It took 5 days for my knee, (even though I couldn't walk)& less than 24 hrs for my brain! Go figure! The good news is... there is NOTHING wrong with my BRAIN! The bad news is... I still HAVE INCREDIBLE PAINFUL headaches coupled with my other painful bodyaches! But NO explanations!

    I'm glad there isn't anything "wrong", but I was hoping, there wd, be something there that could be "fixed"!

    Now what???

    Any suggestions would be appreciated.

    Thanks so much.

    Cindy
  2. UPK5

    UPK5 New Member

    I would love some support right now.
    I thought this doctor was going to give me some answers.
    I am very disillusioned once more.
    Looking for some shoulders, cause my head does HURT!
    Thanks, Cindy
  3. Dee50

    Dee50 New Member

    That's a good nothing is wrong with your head in the MRI. I'm no doctor but maybe you are dealing with Lyme? Just a thought because lyme is so tricky to find. Do you have EBV? Have you been tested for EBV? Maybe it's your teeth? (the filling ect...)
    Sorry you didn't find out what's wrong :-(
    Dee50
  4. RexRox

    RexRox New Member

    I do understand what your going through. I had an MRI ran two weeks ago. It took 10 days to get the results (usually just 24 hours) The nurse finally told me today that the doctor had not signed off on it but she was sure it was ok or he would have called me for more test. He would mail me a letter.
    So I suppose nothing showed up which is good but I am still having headaches. I woke up with one the other day, I took Vicatin every four hours all day long and it never went away. Finally the next day it slowly got better.
    The headache before that I took Midrin as prescribed (one every hour up to four) I then had to take a Xanax for the MRI. I still had the headache and that is when the doctor gave me the Vicatin. That finally got it.
    I am about to go crazy with all of the headaches and feeling like I have been ran over by a truck (a very big one!!)
    I hope you get some answers soon. I wish I had some to give to you. How is your memory? Mine is beyond terrible, and I cannot remember words and names. I has actually gotten hard to carry on conversations. Maybe we will find someone to help. Take care
  5. kch64

    kch64 New Member

    Hi UPK5,

    When I was 25 I had a terrible case of mono. Then the following Spring, it was like all heck broke loose and I got a terrible infection.

    I took rounds of antibiotics for over a year and they helped but didn't get rid of the headaches. I spent years feeling as if someone had burned my sinuses with a blow torch. The pain was almost more than I could tolerate.

    I struggled for years trying to work and feeling so sick I could hardly make it. Had CT scans that showed nothing. Then I started becoming allergic to many of the antibiotics.

    I finally got tested for allergies and started taking shots. It took years also, but they did help.

    I tried antihistimines and they made me feel worse. Decongestants and steroid sprays only helped slightly.

    I'm better now and Thank God, I don't have that pain anymore. I'm telling you all this so you know another person has been there. I believe its part of the FM/CFS. I always did feel like I had FM, but never was diagnosed. Now, 15 years later, I get the diagnosis. BUT I am much improved over those initial years. They were horrible. No one knew but me and God how I suffered. I remember sometimes I would go to bed and wake up feeling like I couldn't breathe and feeling like I was going to die at times. I hate even thinking about it now.

    For me, taking B-vitamins helped relieve my pain somewhat.
    I used to have this terrible post nasal drip. Always draining (sorry) and making me sick.

    I hope you feel better soon. You're in my prayers. If you have some good docs, hopefully they will give you a pain medicine that will help you and you won't suffer as much as I had too.

    You're in my prayers.

    Kendra
    [This Message was Edited on 01/25/2006]
  6. Cromwell

    Cromwell New Member

    USUAL FINDING i AM AFRAID. dID HE DO THE NECK AS WELL? aLSO AN MRA SHOULD BE DONE, THIS LOOKS AT BLOOD VESSELS. DID THEY DO AN MRA? Do request one. Often unrmitting headache(I presume you also have face ache?) comes from the neck area. You could have aggravated the sinus' too with so many nasal sprays as you get rebound effect. I would request neck and MRA for blood vessels and also get second opinion from ENT.
    Love Crom
  7. roseylisa

    roseylisa New Member

    Sounds like fibro I to get the chronic sinus infections along with all over pain. When your sick it just intensifys.
    Think about what a normal person aches and has the flu. We get the aches of the flu plus on top of that the aches from the fibro.
  8. UPK5

    UPK5 New Member

    I never heard of an MRA. I have had an MRI done of my neck area. I believe I have some herniated disks there. In fact, my new PCP mentioned that might be adding to this continual problem.
    As far as consulting with an ENT. I spend more time at my ENT than I do at my PCP. I have so many frequent sinus infections, he has me come in and scopes out all of my sinuses to check and see if polyps are growing back again.
    In between, I see an allegist, every 3 weeks.
    Of course I am HAPPY there is NOTHING wrong with my BRAIn, but I am UNHAPPY that I have to live my life with so much pain and the doctors basically shrug their shoulders and seem to be at a loss of words or answers for helping me. I find this frightening. I am too young, to have my life cut so short. I work only a few hours a day now because a full day was too hard on my knees and back. I have a family, we rarely go out, 'cause I don't feel up to it.
    If I take a Vicodin, I feel much better (sometimes) and then I can do stuff. This last doctor (the neurologist) seemed horrified that I was taking Vicodin or Ultracet to keep my head or body from throbbing from PAIN! If I don't take the meds, I really suffer.
    I certainly need a doctor who does understand.
    Thank you all for responding, and sharing your empathy with me. Sometimes, I do feel all alone and scared...What is this all about???
    Cindy
  9. Cromwell

    Cromwell New Member

    MRA looks at only the blood vessels of the head and neck. MRI looks for other things. If, for eg your had some sort of blood vessel problem(Vascular)causing the head pains then it could be seen on MRA. This is why I think having one of head and neck would be worthwhile.

    Sorry I did not know you are already seeing ENT. I think the ones who are Orontologists as opposed to ENT Allergists are better.

    Hope this helps. Crom
  10. UPK5

    UPK5 New Member

    Hi Fight4acure, wakemeup & all you other kind people,

    Last night, I was feeling SO DOWN, when the neuro doctor said, YOU'RE FINE! And I said, what do you mean, I'm fine??? He was going to leave it flat & dry, like that. Then he said, well you do show sinusitis! As if I didn't KNOW that. I am LIVING with this PAIN! I didn't know who to talk to, so I posted on our FMS site. I kept checking for someone to respond to me. Within a half hour, my post was on the 2nd page. OH MY! I decided to add something to my post and hopefully I would hear from someone. I guess I was not the hot topic of the evening, which made me feel worse. When I came home from work today, I was so glad to see that all of you really do care & had responded. Thanks again.

    About my PAIN. The head PAIN is relatively new, except for the chronic sinusitis condition. I have had 2 polypectomies, where the ENT has removed many nasal polyps in the hospital under general anesthesia. NOT FUN! However, after the last surgery, the frequency of my infections had diminished. Hooray! But they are in full flare again, these past 2 years!

    The other PAIN... I have had DAILY PAIN in my mid-back (around my bra-strap) area for 20+ years. I also have had problems in my neck, my shoulders, tears in both knees (had surgery in both knees also) and last year developed pain in my right rotator cuff - shoulder area, which has NOT gone away since it has started! My entire spine aches.

    I sleep EVERYDAY on a Thermophore (intense heating pad! I have pain daily. I hurt so much, I never know where to put it first!

    I think all of this is related, but I wish I could figure out how to have the energy my mind has in my body. I teach pre-school children. I LOVE my job. I only do it for a half day because standing all day had put too much stress on my body in the 1st place.

    Anyway, I do yoga once a week. I have a class in five minutes. Yoga helps me feel better. But, I still need MORE answers. I just wonder if I HAVE to go to the FFC in order to really get the HELP I need to actually feel better, before it is TOO late!!!

    Thanks again, for all your input and feedback. It is really appreciated!

    Smiles,
    Cindy
  11. Cromwell

    Cromwell New Member

    for gall bladder disease? Just a thought with the pain where your bra strap is. Did you get my answer re MRA as opposed to MRI-BIG difference! Feel better
    Hugz Anne
  12. UPK5

    UPK5 New Member

    Hi Anne,

    It is so nice to meet you and know your name. I actually did get your email about MRA versus MRI and wrote you a long response back with lots of questions. I actually wrote a new post to YOU, but it never posted for some reason. I kept checking for the post and or a response. My head has been hurting SOOO much that I did NOT feel like re-writing it. I don't know why it never appeared. Which doctor does the MRA? I only remember SRA (reading program) from when I was in grade school, do you? I know, close, but NO cigar!

    I was never checked to my knowledge for gall bladder disease).

    I also had wondered what an orontologist was. What is the difference between that kind of doctor and a reg. MD?

    My ENT is an Ear, Nose & Throat - Head & Neck M.D., F.A.C.S. and surgeon.

    My allergist has given me allergy shots for almost 17 years. He is an allergist and immunologist. I do not see orontologist on any of their cards.

    By the way, I spoke to the neurologist and he said my MRI of my brain was FINE! I responded, with, What does FINE mean? Hmmm... I am still in PAIN??? He said, well it does show you have sinusitis, but otherwise you are okay. I have been on an antibiotic for 9 days. My headache has finally subsided. The neurologist still didn't explain, why I have chronic pain in my back and knees and shoulder. Although, time is $$$, and it was NOT my appt time, it was just my time to CALL and check to find out about my MRI results.

    Thanks for your time and brain storming ideas, Anne.

    Wishing you pain free days and happiness!

    Cindy
  13. iamlostinparadise

    iamlostinparadise New Member

    Just a thought....have you been tested for sleep apnea? My CFS doc/internist did not think I needed that test because I was not overweight......turns out I had sleep apnea.

    That was a few years ago...was supposed to wear a CPAP at night to help me breathe but I did not like it.

    Just started to wear it a few weeks ago and my horrible headaches are better. Plan to add oxygen to it at night.

    I had no choice about wearing it because I have had a stroke and a heart attack.....this finally became a no-brainer to me....maybe if I had worn the CPAP I would not have had those problems.

  14. sues1

    sues1 New Member

    Read up on acid reflux......you can find a posting called "silent acid reflux"......

    This causes sore throat, sinus problems, eyes, ears and teeth problems.....etc. Also headaches........

    Also I have posted a couple of times and realized that I clicked onto DELETE.....when I went to EDIT.....

    I hope you find answers........
    [This Message was Edited on 01/30/2006]
  15. Sue50

    Sue50 New Member

    my dr's advice for my headaches-acid reflux medicine, raise head of bed, no eating 3 hours before bed, if eating tomato products eat at lunch time. Drink 3 quarts of water every day, 1 quart as soon as you wake up in the morning. Physical therapy for neck and shoulders, stretching exercises for neck. All of these suggestions has helped me a lot. I hope you get some relief soon.
  16. UPK5

    UPK5 New Member

    Dear Sues and Lost in Paradise,

    Thank you for your recent responses to my MRI post or thread. I have heard about CPAP machines but I didn't realize by NOT having one how much danger you could put yourself in. My doctor has NEVER mentioned it to me. Although my brother's friend told me about it and says it is the greatest invention. I am sorry that you have suffered with a heart attack and a stroke. I'm glad you're doing better now.

    This acid reflux thing is fairly NEW for me. I never really suffered with it before. I will look up the silent acid reflux post that you have mentioned. I have suffered with sinusitis long before the acid reflux problem.

    As I keep getting older, I keep getting a BIGGER list of things to check off that bother me! UGGH!

    Again, thanks ladies for your suggestions and input! It is all appreciated.

    And, BTW, maybe I did accidentally press the delete key and that is why my new post, never posted! I couldn't imagine where it had gone. Very strange.

    Happy almost Groundhog Day!

    Your fibro-friend,
    Cindy
  17. Cromwell

    Cromwell New Member

    read your bio and it showed I had not replied to this, just replied to another post of yours. I have a son with autism too by the way. He is 11.

    MRA shows all the blood vessels in the brain. They sometimes will use contrast. MRI shows the structures and solids. I would definately request MRA which is sort of like an angiogram really, but non invasive. Also I would request a doppler of the caratoid arteries in the neck-this would show any clots or plaques. I say to get these done as they can then rule out problems and you can stop worrying it is one of these things all the time as we all do, unless it is checked out.

    I think being on the computer doesn't help though we need it. Just post ((Cromwell) as sometimes if pages are too many I miss posts but always check my own section. Sometimes a post is four pages away in a couple of hours.

    Love Anne
  18. UPK5

    UPK5 New Member

    I spoke to the neurologist yesterday. I had a terrible weak week, as my headaches intensified and my other chronic body pains are still there too! OUCH!!! When I called the neuro yesterday, he told me to STAY AWAY from "The NARCOTICS" (VICODIN &/or Ultracet) and recommended I try MOBIC for the pain. He called in the prescription and it was very pricey at $125.00 for 60 pills! I hope they give me some relief!
    He is having me take four Topamax a day now (only at night). So far, they haven't worked. I have read other people's posts and they mentioned Topamax was a fabulous life saver for them. So, I am hanging in there, hoping it will help eventually! He also said, he might introduce another headache medicine like imitrex (but not until he knows that I am OK with my heart, cholesterol and a few other areas that may conflict with the medicine). I know he doesn't want me to take NARCOTICS, but maybe these other drugs will help me. Any opinions on, Topamax and Imitrex??? If you take Topamax and Imitrex, do you still take Vicodin or other painkillers? Just curious?

    Thanks again, for your continued help, support, suggestions, feedback and friendship.

    Hugs,
    Cindy