Well this is what happened today!
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!