and update and Noni juice

    • Anonymous
      May 18, 2009 at 8:40 am

      Hi guys.

      I am still searching for another dr. I got an excellent referall to a professor only to find out he’s in the “other” office that my current Dr is in.
      I dont know what to do. All other dr’s want my med recs first then they decide whether to see me. That’s a total crock if you ask me. But, I’m still working on it.

      In the meantime, I’m still getting ivig every two weeks. 40mg each time for a total of 80 per month. No, it’s not enough and no, I CANNOT convince my Dr otherwise. But, I have to have something so I continue with this.

      I now walk with a cane all of the time other than around the house and around my workplace. I have brought it in to work a few mornings…but I dont use it to walk the halls.

      I am super busy. Planting flowers is becoming my favorite thing to do…besides hanging with my son and hubby. Connor is in baseball, coach pitch, and has games twice a week. I’m the team Mom…and I enjoy it.

      One thing I want to tell about . I was at my pain mgmt Dr last week. This man is awesome…always trying to find a way to help me. A friend of his gave him a bottle of this stuff and he brought it into the room with two cups and asked me to do a “shot” with him. The seal had been broken so he wanted me to see him drink it, too. And, I do trust him completely.
      We took a shot. It was BAD. The after-taste is literally like vomit.
      He had me take it home to drink the rest and let him know how I do. I’ve only drank it once since bringing it home…I do feel like I owe it to him to try it b/c he said it’s expensive. It’s just hard to do. It tastes so bad.
      It’s called Tahitian Noni juice. Anyone heard of it or tried it ?
      It’s a supplement. He also gave me a b-12 shot…a real shot, in the rump.

      He thought ithe Noni juice may help…like I say, he’s desperate to help me…and willing to try anything.
      I know he’d be disappointed to know I’ve only had one serving since being home.
      You are spose to drink 1 oz a day. YUCK.

      going to Myrtle Beach with hubby in two weeks. So excited.

      hope all is well.

      I forgot to mention. I took Connor to the dr b/c I noticed he isnt running like the other kids on his baseball team. I’ve always thought he “over ran or walks”. He’s still rather clumsy.
      The dr watched him walk and run. He did the reflex test on both knees and there was nothing. You can imagine how my heart sunk. He has great ankle reflex and thought that maybe the knee thing was b/c he was tense. He has sent us to an pediatric ortho dr in June …Connor’s bones are out of line. You can see how his legs bow from the knee down. When he runs, he pushes off from the inside arch area of his feet rather than heel/toe. He’s flat footed like I am. I ask for your prayers with this. The Dr said maybe some PT will do but we wont know until we see the dr. I pray its nothing major.

      take care guys,

    • Anonymous
      May 18, 2009 at 10:34 am

      Hey I have been thinking about you ever since you posted your dilemna. My husband read your post and he never reads anything on here and it affected him. Our two year old has an autoimmune disorder or cidp or something. I understand your dilemna being a mother of two children. When I look at my daughter I wish I could make all this be happening to ME. She is so little to deal with all this pain. I don’t even know if she has numbness as she is too little to know. She complains of her feet and doesn’t really like to wear shoes and socks and doesn’t like a blanket near her feet at night. I can’t stand the thought of her feeling numbness and tingling. Hang in there!

    • Anonymous
      May 18, 2009 at 10:38 am

      My prayers to your baby girl. Can she tolerate heat on them ? I wonder about a heating pad…on lower settings of course. But, maybe that could help.

      They say that children are more resilient. I’ll pray that she heals fast and doesnt actually have this CIDP crud.

      Best of luck to you. I know how you feel by wanting to take her pain away and have this yourself…I”m the one with CIDP…if Connor had this, I dont know what I’d do. I’m very worried about his legs but the dr assured me it’s not neurological.

      I hope you have a good dr ?

      take care,

    • Anonymous
      May 18, 2009 at 10:45 am

      Hi Stacey, Good girl with the cane! Try mixing that juice with some OJ. I tried a different juice and that helped the taste.
      Also, that may not be too bad an idea that a new Neuro look over you records first. Every time I tried a new one, they barely glanced at the records, and I had to start the EMG, and all the tests again. (More $$$$ for them). That is why I gave up. So maybe if you find one who sounds good, give it a try. May save you from all those needles. Find a good one and I might come down and try again.
      Glad Connor is into baseball, my grandson is too. I am a baseball nut, follow the Minn. twins as we get all the games on TV up here.
      Hugs, Jean

    • Anonymous
      May 18, 2009 at 3:03 pm

      I triedthat Noni Juice a few years back and that stuff tasted nasty! If it’s the same thing we are talking about. A friend gave me some to try and I never did finish it off! I have really bad gag reflexes and if the taste of something almost makes me sick, i can’t handle it! Orange juice might help some!
      Ohh I hope and pray Connor is going to be okay and it’s just something minor! I know that now puts a major worry on you. I will say big prayers and hope there is nothing wrong.
      The whole time I was walking around with Lupus, anything that was strange with my children I watch them very carefully especially when I found out it could be passed on to your children. My one daughter started getting sick two years ago and tested positive anf my other daughter got diagnosed with Rhuematoid Arthritis. I still think she may have lupus but just has not reached the criteria. So far my one daughter that has it is doing great. We caught her in time before any damage could set in! So you have every reason to worry about your children getting what you have! It’s scary enough us having to deal with it let alone wondering about your child and as a parent sick or not sick we don’t want our children getting our ailments! Including CIDP! Wishing you my best and hope they start listening to you and get you better again! Hugs
      Linda H