Doctors appt today! Wish me luck

    • Anonymous
      August 26, 2008 at 5:18 am

      I have a doctor’s appt today an need many crossed fingers today. I hope they get some things rolling so I won’t have to wait for Duke to do it!
      Say a prayer for me today. I really need it! Will post later about the outcome and hope it’s good. Hugs! Everybody have a nice day today!

    • Anonymous
      August 26, 2008 at 6:03 am

      Good Luck Linda,

      Let us know how it went!

    • Anonymous
      August 26, 2008 at 6:06 am

      Thanks Tim! I posted to you about neurontin below! Hope what I gave was helpful. Have a nice day today! ๐Ÿ˜€

    • Anonymous
      August 26, 2008 at 9:31 am

      ๐Ÿ™‚ Linda,
      Good Luck, I will be thinking of of you. Let us know how it goes. Is this your appointment at Duke? I have the hardest time keeping up. Half the time I can’t even remember what forum I have posted on, :rolleyes: I tell my family it’s the drugs:p Just a little humor to cheer ya up.
      Thinking of ya:)

    • August 26, 2008 at 10:44 am

      I’m on my knees … and you’re before the throne of the Most High God!


    • Anonymous
      August 26, 2008 at 10:57 am

      Good Luck today Linda! Praying the doc has some answers for you. Let us know what he says.

    • Anonymous
      August 26, 2008 at 3:16 pm


      I go to Duke on Thursday. Let me know which Dr I need to knock around to get your appointment moved up !!!

      Good luck

      Dick S

    • Anonymous
      August 26, 2008 at 3:23 pm

      Linda, here’s hoping you get some answers today.
      Thinking good thoughts, sending strong vibes your way.
      Let us know.

    • Anonymous
      August 26, 2008 at 7:16 pm

      Some good news and some bad news! Did not go to Duke yet because I am on a waiting list! So that is still in limbo! We had a long talk! Two hours in his office today.
      Because of me having problems sleeping, he has ordered another sleep study test and scheduled me for a fitting of a CPAP machine. That is planned for September 24th. On September 4th, I am scheduled for an Ultrasound of my thyroid gland. Have shown two thyroid panels that are on a borderline level. But not showing any positive results. They found a nodule on my thyroid and want to check it out to rule out cancer.
      Bad news! I had a lab that showed a very high CK with normal limits of being 18-154. Mine is showing 346 and that’s pretty darn high. CKMB was also high at normal being 0-5 and that was at 6.82. But had a normal EKG. CK’s are used mainly to detect heart attacks but mine were not indicative of a heart attack. But CK’s can also be high if muscle tissue is being damaged. So he thinks I have something Neuromuscular going on. So far Positive IGM with a low titer. A low LDH which means tissue damage. He wants to rule out that Thyroid nodule possibly causing Hyperthyroidism. Graves Disease! If that comes back showing no problems. Then we still have CIDP of unknown etology.
      Now! Tomorrow morning he wants me to call my Neurologist that I am seeing until I get into Duke and ask them about scheduling a Spinal Tap. He told me that I would need a Neurologist to read the report. So I will call him tomorrow and see if they can do the spinal early instead of me waiting for Duke. If the spinal comes back positive, then they are going to rush me getting into Duke. But it’s going to be another month of suffering!
      Then they will have to find out what kind of neuromuscular disease I have when I get to Duke. Some can be diagnosed and treated while other’s can’t. At least some things are getting done. And I hope they get Duke rushing me getting in. Right now I have another month of waiting, but hopefully my neuro will do that spinal this coming month. It might rush things a bit if they know where I actually stand! But that is how my day went! Still no treatment but maybe soon! I sure hope!

    • Anonymous
      August 26, 2008 at 8:13 pm

      Hi Linda,

      Sounded like a pretty big day and there was some direction after the visit.
      I am hopeful for you that your heart is OK. Is the ultrasound the best imaging they do to check the nodule? We’ll Pray it works out for the best for you.
      Talk to ya-Tim-

    • Anonymous
      August 27, 2008 at 5:21 am

      Hi Tim! I think that is one of the best test for detecting growth and cancer masses on the thyroid. He is going to see if that nodule has done any increase in size. If it has then a biopsy would then be needed. I would then get referred to a Endrocine doctor.
      Raining here this morning making me sleepy. Might just get under the covers this morning and grab a few more hours of sleep. Sure need it too! ๐Ÿ˜€

    • August 27, 2008 at 11:25 am

      Linda, Thanks for the update. Know that I will be praying for you as well. I’m encouraged that you have direction. My spinal tap confirmed my CIDP DX (and wasn’t any big deal for me). I will pray the same for you. I will also pray for your heart and thyroid, correct diagnosis, treatment, sleep, peace and strength.

      Hang in there. Gary

    • Anonymous
      August 27, 2008 at 5:14 pm

      I think the thyroid nodule might be really be my problem but to be on the safe side we want to rule it out! But thank-you for praying for me! I appreciate that alot! Really do! Hugs

    • Anonymous
      August 28, 2008 at 10:20 am

      Just went thru some thyroid tests with my mom and after the ultrasound and before the biopsy they did a radioactive test where she swallowed a radioactive pill and then 6 hours later they scanned her thyroid to see how much of the radioactive stuff her thyroid absorbed. Based on that they are postponing the biopsy in lieu of other treatment. Might be an option for you.

      Keep smiling!


    • Anonymous
      August 28, 2008 at 4:34 pm

      At least you are heading in a direction. Said a prayer for you. Waiting is so hard and then to get started on treatments that take time to work. Hang in there. Push things along a liile if you can.

    • Anonymous
      August 28, 2008 at 6:08 pm

      Sounds to me that you have been quite busy as well. I know how hard it is to wait as we waited about 2 1/2 months to get into Cleveland Clinic and now he is not scheduleing new patients until April So try and be patient and in the meantime they can do other tests. After lumbar puncture they usually do biopsy of ankle but you might be different since it involves thyroid.

      I will hope that things keep going forward. It is up and downs isn’t it.

    • Anonymous
      August 28, 2008 at 7:58 pm

      Thank-you all for the hopes and prayers! I just hope this month, I see some answers. But if I don’t I guess I will have to except the waiting until something does come up! My fear right now is like you and Bill, Joan! It’s very frustrating not knowing what the heck it is going on! Thank-you all!

    • Anonymous
      August 28, 2008 at 10:02 pm

      I hope you get some answers soon Linda. Take care.


    • Anonymous
      August 28, 2008 at 11:19 pm

      Thanks Kelly! I appreciate everybody in here. You all are so wonderful. I already had a great deal of knowledge about Lupus and being sick with that. And then getting CIDP. Being in this site, I have learned alot. And it has helped me cope a bit better knowing what I am dealing with. Just scary at times. The unknown is what scares me. If I knew what it was I would handle it much better because I would know something about it. But that unknown stuff gets hard to handle.

    • Anonymous
      August 29, 2008 at 12:00 am


      It seemed like forever when I was working towards my diagnosis. It took a couple of years. Dr.s at Duke, Winston-Salem (Baptist) Hospital, and others. Finally when it was clear, I felt so much relief, Finally !!

      Hang in there. Let them take the time they need to make it right. (As long as you stay reasonably healthy). It is frustrating at times.

      I’ll be thinking about you.

      Dick S

    • Anonymous
      August 29, 2008 at 12:43 am

      Thank-you Dick! I was considering going to Winston Salem but that is a longer drive for me. So I guess it’s going to be Duke instead. That is a long time going 2 1/2 years. But then I saw 5 years with Lupus trying to be diagnosed. Hoping it’s still Lupus and nothing else. Then maybe they can treat me faster. If it’s Lupus causing this we know the treatment plan. If it’s not Lupus then I have no idea. Is Duke really good place to go? I have heard they were good but have never experienced it before going there? Thanks for the encouragement. I’m hanging in there! Trying! Really trying!