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  • My daughter's neuro appt....



    Sandy has been through so much recently with her own health, the health of her daughter, and her stray doggie. I think she is definitely showing bravery and tenacity in the face of all of this, while always here helping and supporting others. Bravo! ~vm

    Actually it went very well, but I came home more worried than I left. She's actually thinking it might be something cardiac related because she's got a very slow heartrate. I noticed that the morning she passed out/seized, but figured that it was slow because of what she'd been through. So we have a cardiology consult now as well. She's going to run two different EEG's, one where she's asleep, and one while she's awake. She's also setting up a MRI. She is very concerned about the headaches Megan has been having, so she will probably be on some sort of medication to prevent the headaches after all the test results are back.

    I was VERY pleased with this doctor....big difference from my experience with that rheumatologist last week!! So, at least we've got a good doctor on our team and hopefully she'll get to the bottom of this.

    Just thought I'd let you guys know....thanks so much for all the support you guys have given me through all of this. I really appreciate it!
    Last edited by vm; 04-01-2007, 01:51 PM. Reason: add award
    *IC-- Summer 2004; PFD--October 2005
    *Fibro--Fall 2000; CFS-- Fall 2000
    *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

    Total Abdominal Hysterectomy--adenomyosis--9\08

    04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

  • #2
    Sounds like she has her ducks in a row with her care. I am glad she is exploring all options for you. Keep us posted

    Comment


    • #3
      Glad to hear that you found a Dr. for your daughter that you like and seems to be on the ball. I hope you get to the bottom of everything very soon.

      Comment


      • #4
        Oh, you have no idea how happy I am that this doctor has turned out to be good!!! I'm much more comfortable knowing you and your daughter are in good hands, at least with this one issue.

        Now we have to get you to a rheumy who isn't a total quack!!!
        ****
        Jen

        *Diagnosed with severe IC in 2004
        *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
        *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
        *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

        **I am not a medical authority nor do I offer definitive medical advice. I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

        Comment


        • #5
          Thanks Leslie!
          *IC-- Summer 2004; PFD--October 2005
          *Fibro--Fall 2000; CFS-- Fall 2000
          *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

          Total Abdominal Hysterectomy--adenomyosis--9\08

          04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

          Comment


          • #6
            Thanks Jen and HGC. Jen, I've got an appt in an hour with my GP...I can't WAIT to tell him what happened at that appt. I'm hoping he'll be able to run my labs for me. I'm taking the lab sheet with me, so maybe he can figure out what tubes they go in and who to send them to!

            It's one thing after another, but at least my baby IS in good hands!
            *IC-- Summer 2004; PFD--October 2005
            *Fibro--Fall 2000; CFS-- Fall 2000
            *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

            Total Abdominal Hysterectomy--adenomyosis--9\08

            04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

            Comment


            • #7
              Sandy,
              I am keeping you all in my prayers
              Hugs
              Ronda

              ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


              Link to Patient Handbook:
              http://www.ic-network.com/handbook/

              Diet Reference Sheet:
              http://www.ic-network.com/diet/icndi...tsheet0909.pdf

              Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

              Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

              Meds I have Tried:
              Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
              Lexapro< Bad reaction to this med!
              Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

              Dx With IC in Nov 2006 with Hydro/Cysto
              Hydro/Cysto Caused Bladder to Rupture.

              Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



              ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

              Comment


              • #8
                Ronda, we need all the prayers we can get right now! Thank you!
                *IC-- Summer 2004; PFD--October 2005
                *Fibro--Fall 2000; CFS-- Fall 2000
                *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

                Total Abdominal Hysterectomy--adenomyosis--9\08

                04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

                Comment


                • #9
                  More prayers from here.

                  Donna
                  Stay safe


                  Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                  Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                  Have you checked the ICN Shop?
                  Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

                  Patient Help: http://www.ic-network.com/patientlinks.html

                  Sub-types https://www.ic-network.com/five-pote...markably-well/

                  Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                  AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                  I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
                  [3MG]

                  Anyone who says something is foolproof hasn't met a determined fool

                  Comment


                  • #10
                    Glad to hear that you are pleased with this doctor. Good luck with your GP.
                    Sharon

                    Shopping??? Did someone mention shopping? I'll get my hat... ;-)

                    Where I can be found most days.



                    Link to the ICN Patient Handbook:
                    http://www.ic-network.com/handbook/

                    Link to the IC Diet:
                    http://www.ic-network.com/diet/


                    IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

                    Comment


                    • #11
                      Glad you got a good neuro for your daughter, remember if you have any questions regarding the eeg's email me. My daughter has had several throughout her ordeal. We had to keep her up all night one time, so she would be able to fall asleep for the one, that was fun. My husband and i took shifts keeping her up, and as soon as they got her hooked up and lowered the lights, she was out, so they got a good reading. Good Luck

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                      • #12
                        I will diffently keep you in my thoughts and prayers.

                        Leslie I love then new picture
                        'The will of God will never take you where the Grace of God will not protect you.'

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                        • #13
                          And more prayers. Hoping they find out what it is so she can get some treatment for it. Glad to hear to has some good doctors. I know she has a wonderful MOM.

                          Sending hugs, Trishann

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                          • #14
                            Oh that is fabulous news Sandy! I am so glad you really like the doc - especially since she's dealing with a kiddo, personality and thoroughness is very important!! Yay!

                            Thanks for the update!!!!!

                            XOXO
                            Hugs,
                            Tracey
                            How do you eat an elephant? One bite at a time...

                            Harry arrived 2/23/09!



                            *IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

                            IC Diet Cheat Sheet:
                            http://www.ic-network.com/diet/2009icdietlist.pdf



                            Dx's:
                            IC dx'd Nov 2004
                            Lymphocytic Colitis dx'd July 2005
                            Possible IBS
                            Current IC Meds
                            Vistaril 25mg in the evening
                            Previous IC Meds taken:
                            Cystoprotek - 2 caps 2x's a day
                            Elmiron, 100mg 3x's a day
                            Ditropan, 5 mg 3x's a day
                            Others:
                            Wellbutrin 150mg 2x's a day for Anxiety/IBS
                            Pepcid 40mg a day for GERD
                            Zytrec for Nasal Allergies
                            Align Probiotic daily for IBS

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                            • #15
                              I am so glad to hear that this Dr. was so thorough! (sp?) I agree that the cardiac issue sounds scary, and am so glad that you have an appt with a cardiologist too, just to be safe. I will also pray for her (and you). I am so glad that you caught this now, so hopefully she can be put on the right meds to help her get better. Hopefully, the new meds will also keep her from getting the bad headaches.

                              I know you saw the GP earlier today for you. Did you tell him about the horrible Rhematologist and his bizzare diagnosis? I am sure he was as shocked as we were. I hope that you got all your lab work completed today.

                              Please keep us posted on how her cardio visit goes and the news of your Dr. visit as well.

                              Hugs,
                              Amy

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