Thank you so much for sharing this interesting and valuable information. I'm sure we all know from experience that Dr. P clearly is undercharging for his consultation. What a guy:Retro smile:I think maybe that you meant they offered you an injection of Toredal after the LP rather than Tramadol, since Toredal is as you said an anti-inflammatory with analgesic properties that can last as long as a week. It can indeed be helpful. Thanks again for sharing your story in such detail.
:Retro smile:Thanks so much Corinne (and Cort, for publishing). Dr Peterson is one of the Greats and I really appreciate your taking the time to do such a detailed write up - much appreciated. (I almost feel like I went along with you for the ride!)
I am overwhelmed by the "thank you's". It makes it all worth it. I hand scribbled this journal and Cort kindly transcribed it ...(after losing a few pages a couple of times :Retro smile:.) No really, I have him to thank for all of this. So far I don't notice much from the Procrit, however Dr. P still wants me to stay on it til I see him in Feb....he must like my numbers. It requires weekly labs and luckily the lab is just two blocks away. One thing I have noticed is that it has surely raised my BP from an average of about 95/60 to 111/72. That has not necesarrily translated into feeling better, howeve I understand that this illnes is multifaceted and perhaps we can start with improving just one facet at a time and go from there. I will think of you all when I return in a few weeks... thanks for the support!
I feel like i have been right there with you on your journey. Thanks for taking the time to write your experiences!!
Corrine, thank you for sharing your experience with us! If I had the money, I'd definitely follow your lead! It would really be wonderful to see Dr. P and get those tests done. Maybe someday! Thanks again for taking the time to tell us about your trip. We are able to vicariously go through your story.
Thanks for this post and hope you don't mind a long inquiry related to a spinal tap. I've had fatigue for 3.5 years and have had a SPECT brain scan, QEEG, and MRI done as well as many other blood tests. I get a tension in my head at times which increases to a headache and body contractions if I don't lay down. I saw a neurologist last week and she mentioned the possibility of spinal fluid leaking which can cause certain symptoms like these. A way she said to find this out is to have a spinal tap and measure the spinal fluid pressure. One treatment is then injecting blood to clot the leak. For more info, I researched it and found this website: http://www.spinalheadache.org/patientinfo.htm
I've noticed the past 3 days that when I lay down or put my head on a decline below my waist the headache or brain fog goes away very quickly. Don't know if this is due to spinal fluid, blood, or something else, but I have an appointment with the neurologist again tomorrow afternoon to discuss this and figure out if I should go ahead and have a spinal tap done. Since I don't know how knowledgeable she is of CFS and I read where you wrote of the spinal tap by Dr. Peterson:
"I could get it done somewhere at home but they would not take the amount of fluid Dr. P. takes and they would probably only test it for MS and other obvious infections, whereas Dr. P. would have examined for various viruses, lactate, amino acids, etc. and he would freeze the sample for future reference."
could you tell me any more about what he tests for in the spinal fluid that I might have my doctor check as well?