Monday, April 27, 2009

Symptom Watch and Doctor Visit

Things have been a bit stressful for me.

One problem is that when I filled my weekly pill case yesterday, I somehow missed out on my Cymbalta. This means that by last night, and continuing into today, I've been suffering from withdrawal. I have been extra emotional. But worse than that, Cymbalta withdrawal often consists of "brain zaps" and vertigo.


So, once I figured out what had happened, I knew I had to plan a trip back to my boyfriend's house where I keep my regular meds today. Thank goodness I was able to take my Cymbalta, and the brain zaps stopped in the last hour.

Unfortunately, I've also had some severe POTS symptoms, where my heart feels like it stops over and over again...whenever I try to speak a whole sentence, or when I exhale and don't inhale soon enough. I'm still working on a better explanation for this symptom. It is quite disabling.

In addition, my temperature dysregulation has gotten significantly worse lately. I've been waking up every night soaked in sweat multiple times. However, I also tend to get the chills when I awake. I have been sweating way more than usual, and I often have goose bumps or chills at the same time. Very difficult to deal with, since I don't usually have the energy to shower every day. It seems that I'm going to have to try even harder, based on the amount of sweating.

Okay...onto the real news of the day. I had my appointment with Dr. Camacho, the head of the osteoporosis clinic at Loyola. This was to check on the state of my bones. I'm not sure what to say about this, so I'll just present the information I was given:
-Based on a blood test done in January (only one month into my vitamin D treatment), my blood levels of calcium, vitamin D, parathyroid hormone, and bone specific alkaline phosphatase have all improved remarkably (after only 3 weeks of treatment).
-A new DEXA scan is not advisable until after a full year of treatment. Improvement would not be expected any earlier, as bone growth takes time. If I choose to get an interim DEXA scan sometime this summer to check for progress, it would not be covered by insurance (about $2000 out-of-pocket).
-Dr. Camacho believes that the DEXA scan only reflects 17% of true bone strength. She believes the bone markers in the blood are a better reflection of fracture protection, and thus, bone strength.

My thoughts are as follows:
-The blood test she was referring to was done after only 3 weeks of vitamin D treatment. I really don't understand how I would have shown such improvement in this period of time.
-I do not have the actual numbers of my blood counts, but I have requested them from medical records at Loyola. I've also requested the results of the blood work I had done today.
-I had my hopes set on having my DEXA scan done immediately, so that I could be cleared for surgery in time for summer. However, it would be a horrible waste of money to have the scan done if it would be too soon to show improvement. I have no idea if I should try to get a DEXA scan done this summer. I scheduled one for August 28, but I have no idea if I should reschedule it for earlier, or wait until after I see Dr. Camacho again at the end of October.
-How can I truly know if my bones are getting stronger and we are on the right track with the vitamin D and calcium supplements, without a stronger medication like Boniva, Fosamax, Reclast, or Forteo? It seems that I would need a bone density scan to find out for sure. And I can't try this treatment for a full year before I know if it's working. Can I?
-Unfortunately, even though Dr. Camacho strongly believes that the bone markers in the blood are more reflective of bone strength, TCI trusts in the DEXA scan. They clear you for surgery based only on DEXA improvement of bone density.

In any case, Dr. Camacho has sent her thoughts...that my blood shows clear signs of improvement of the Vitamin D deficiency and the hyperparathyroidism. This should be proof enough that my bones are going in the right direction. But all I can do is wait to find out if this is enough for Dr. B. If not, I would have to wait and see if my next DEXA scan is better...but it is uncertain when this would be done.

I am utterly frustrated and quite let down by this whole ordeal. I guess I had my hopes up way too soon. I really was hoping that I'd be able to have my next and last surgery this summer. Clearly, I was a bit too optimistic. Now, my patience will continue to be pushed to the extreme, as I face much longer dealing with neurological progression of symptoms. I'm at a loss.