Going for second opinion

    • Anonymous
      September 26, 2008 at 4:44 pm

      Hi everyone. Just wanted to let you know I got my appointment with Dr Teener at U of M for next Tuesday, Sept. 30. My girlfriend’s going down with me Mon. eve, as I have an early app’t and it is a 3 hour drive. They are doing an EMG first. I am worried something else is wrong. Have new pains in new places and my bloodwork is getting more abnormal. My neurologist called today and is upping my lab work to every 6 weeks to keep a close eye on things.
      Can use your prayers and good thoughts.

      Thank you…….Emma

    • September 26, 2008 at 4:57 pm

      Adding you to the prayer list Emma!
      Dawn Kevies mom

    • Anonymous
      September 26, 2008 at 5:14 pm

      Emma, prayers going your way! Hopefully this is not something serious, but I am glad you have an appointment so soon. I am going to work next week so can’t call to see how the appointment goes, but I will keep in touch through here and I’ll email you.

      Love ya, buddy Cyber hug:)

    • Anonymous
      September 26, 2008 at 7:57 pm

      Hi Emma, glad you are able to be seen so soon! Good thoughts and best wishes and lots of prayers being sent to ya! Oh, hugs too:D

    • Anonymous
      September 26, 2008 at 9:19 pm

      Emma, my prayer go with you. A second opinion never hurts. Here hoping you get good news.

    • Anonymous
      September 27, 2008 at 1:12 am

      WOOHOO!! Emma!!! Tell Dr Teener Hi for me!!! wish I could get up to Ann Arbor to meet ya!! Hope things go well for you! Don’t forget to take along Jerimy’s phone number, just in case you get lost.:)

    • Anonymous
      September 27, 2008 at 9:36 am

      You are in my thoughts and prayers. I hope that he has some answers and treatment suggestions for you. Your appt is finally here! Keep us posted…..inquiring minds want to know! :p

    • Anonymous
      September 27, 2008 at 12:53 pm

      thanks everyone for your prayers, well wishes, and hugs. Am interested to see what a pair of fresh eyes has to say. Anything to get feeling better.
      take care..will let you know how everything goes.

    • Anonymous
      September 28, 2008 at 11:55 am

      i’ll have you on my mind all day monday, emma! like you said, i cant wait to see what a fresh set of eyes will see! keepin’ my fingers crossed and praying to hear encouraging news!

      love ya bunches!

    • Anonymous
      September 28, 2008 at 5:51 pm

      Good Luck Emma!
      I will be thinking of you & you are in my prayers.

    • Anonymous
      September 28, 2008 at 6:33 pm


      Moore prayers will cover you. Driving mercies for both of you.

    • Anonymous
      October 1, 2008 at 8:51 pm

      Thank you everyone for your prayers and support. Had a safe, and long, drive.
      Really liked Dr. Teener. He is personable, listens, and seems very competent.
      Making quite a few changes. First the EMG and testing still showing my cidp to be sensory/nerves only affected/legs worse than arms still. My muscles are intact. Had a huge muscle spasm in back of right thigh when I got home-guess my leg was not happy with all the emg zaps.
      Changing to a new infusion company. Not sure which one. Have to get insurance approval and go from there. Hopefully will start next week. Dr. Teener feels I have only been getting 1gm/kg. ivig and is going to give me a loading dose of 2gm/kg. for 4 days next week and then 1 day weekly after that. I have to see him again in 6 weeks to see how that is doing. Hopefully my balance and fatigue will improve. A 6 hr. drive for a 1/2 hr. office visit-I am putting a lot of faith in him.
      Changing me from Neurontin to Lyrica 200mg 3X day. Sounded like a big dose to me, but I was taking a huge dose of neurontin.
      Discussed need for port and I again brought up my fear of infection/rejection with being on the Imuran. Infection would be from improper sterile technique by my nurse, so I am resolved to the port.
      Lab drew 7 tubes of blood mostly for RA and antibodies, and Dr Teener said he may increase my Imuran.
      Once my balance and other problems resolve, I will get PT to help me develop a good cardio workout plan and retrain my brain on the spacial awareness of me feet.
      Last change, I am uneasy with. He wants to change me from the Darvocet to Methadone 10mg. 3Xday. I googled everything today and I want to talk this over with my gp first. Dr Teener only gave me one month supply, and not sure if he would follow that, or my gp would. Don’t like what Google said about the highly addictive part, and I haven’t been on any opiates or hard core stuff ever. Supposedly it is great for pain, and the thought of being pain free sounds wonderful after 8 years. Does anyone else take Methadone or have thoughts about it?
      Cheryl, I am sorry, I forgot to tell Dr. Teener you said hi. I will tell him in 6 weeks. Have an appt. for Nov. 25th in the afternoon, so I can drive it all in 1 day, rather than have to spend more money on the motel and extra meals. I drove the whole trip, but my girlfriend finished up at home, parking and unpacking after the spasm hit.
      I feel encouraged. Dr. Teener did say that he doesn’t use remit/relapse or progressive with Cidp, that those terms really deal with MS. Interesting. At this point, I don’t care what he calls it, as long as I improve.
      That’s it for Dr. Teener, that was really a lot to absorb in the short time I was with him.
      Now on to my gp to schedule a CAT scan of my abdomen and check things there. Still can use your prayers there too, please.
      Thank you for listening to my lengthly report.

    • Anonymous
      October 1, 2008 at 10:12 pm

      We were anxiously awaiting your report! Sounds like you have a new battle plan. Wishing you the best and hope for a good report on you CT!

    • Anonymous
      October 2, 2008 at 6:28 am

      Sent you a pm. Take care and rest up from your trip! We have the race to think about!

    • Anonymous
      October 2, 2008 at 8:16 am

      Glad to hear that there is a new plan of attack since the old one wasn’t working too great. The recipe for success has to be out there. At least the long trip seemed worthwhile. Keep us posted as to your progress. This Dr. sounds more aggressive. I agree with you that it doesn’t matter what it is called just get some relief. I didn’t realize Methadone was still a drug of choice but he must have had success with it. I don’t have any pearls of wisdom to offer you but it sounds like a great plan.

    • Anonymous
      October 2, 2008 at 1:05 pm

      Hi Emma! So sorry to hear that you have not been feeling well and hope that this new doctors get you back on your feet. The Methadone! I was given an RX about that drug also for my back injury two years ago and I got online like you looking that drug up. They use it alot for heroin addicts in Methadone Clinics. I just did not feel right taking something like that and decided not to take it. The addictive factors were just far to risky. I take tylenol with codiene but only use that when needed but am not addicted to it. Methadone on the other hand can be highly addicting and it does not take much. My father when he had his brain tumor and was dying they gave him Methadone also. I saw him never taking drugs at all during his time of living and within weeks he was addicted. But he was dying too! Just noticed before it was time to give him his medication he was asking for more! Either he was in terrible pain and didn’t have enough or was liking the taste! I seemed to notice him liking the drug. Hard to explain unless you were there with me seeing what was going on, but I think my father started liking the taste. But it’s up to you to decide! What you think is best for you! Me! I was too scared to take it!

    • Anonymous
      October 2, 2008 at 2:08 pm

      Emma, Don’t worry about it Hun!! The methadone is used to trick the body into thinking the pain is taken care of, to use the least amount possible to accomplish that feat. The dose you are taking is not as addictive, its quite low. I have a nephew who is using methadone to get over his addiction to drugs, he is on a much higher dose and so far so good. I have been on methadone and other opiates, much higher dose, and I never got addicted to any of them. In my opinion its better to be painfree and let the body recover then to put more stress on yourself worrying about a possible addiction. Of course everyone responds differently to narcotics, be aware to the possible side effects and take as directed, you should be fine, you can always stop with a call to Dr Teeners’ office.
      Man you got off good, only 7 vials, I had to donate 10 vials both times!:eek: 😉
      You are in My Thoughts and Prayers, may your ct come out clear as a bell-which really doesn’t make much sense if you think about it, cause a bell is anything but clear:confused: may you hear excellent results!!:) Take care.

    • Anonymous
      October 2, 2008 at 7:43 pm

      Thanks everyone. Thanks Cheryl about the Methadone comments, I will fill it tomorrow and try a month worth. I so hope the pain will stop.
      Haven’t heard about the ivig yet. I thought I was getting a good dose. 45gm. X 2 days every 2 weeks sounds right for my height and weight, but I’ll see what Dr. Teener orders. Can’t schedule my cat scan till the ivig gets scheduled, but I know everything will get done in time-hard to wait for everything to get started. Tomorrow will start the new meds and go from there. Talk to you guys later.

    • Anonymous
      October 5, 2008 at 10:18 am

      ive alread mentioned this to emma, but thought maybe the rest of you wouldnt mind knowing…

      after we found out that my pain medicine was what was killing me, i read up a lot on the pain med subject. one of the things that i found out was that pain meds are much more addictive if you take them at the same times every day. when you do that, your body starts to expect that bedtime dose, for example, and freaks out when it doesnt get it. On the other hand, if you do not take the pain med on a set schedule, your body doesnt know when to expect it, and therefore doesnt miss it as much. just like when you are expecting a phone call – you keep staring at the phone and minutes feel like hours. but if someone calls randomly, it isnt an issue.

      obviously, im not a good person to ask about pain meds. not sure that i can be totally objective on that issue. i know too many people are in tons of pain and need help. i just wish there was a healthier way to go about it. i had never thought much about medical marijuana before, but i understand now that the side effects of marijuana are nothing compared those of the meds so many of us depend on for pain control. i dont use it and im not suggesting anyone does. i just think it is interesting and that it is something that should be an option for those who are desperate for help. any opinions?

      have any of you tried homeopathic pain meds? a friend of mine told me about them and said that a local doctor actually writes presciptions for them, and they work as well as or better than darvocet, vicodin, etc. and with no side effects! thats awesome! the doc is a traditional medical doc, and also a homeopathic doc, so he incorporates the homeopathy into his practice. cool, ha!