i had my first appointment today with a Pain Physician, which went very well, as in he's a very attentive, sympathetic and knowledgeable doctor, and after listening to my PGAD story, he talked to me about the possibility of having a Caudal nerve block --which is one thing i have been wanting to do.
Then he examined me by testing my reflexes, and was really surprised at his findings. then, while rubbing my middle back, i flinched in pain and he asked, "Does your middle back and neck hurt?" and i said, "all the time". he then proceeded to tell me the following, which he briefly explained, but i also looked up on the internet when i got home, and this is, believe it or not, the short version:
1) I have Autonomic dysreflexia, also known as hyperreflexia which is a state that is unique to patients after spinal cord injury at a T-5 level and above. Autonomic dysreflexia means an over-activity of the Autonomic Nervous System. It can occur when an irritating stimulus is introduced to the body below the level of spinal cord injury, such as an overfull bladder (even bladder spasms or pregnancy). The stimulus sends nerve impulses to the spinal cord, where they travel upward until they are blocked by the lesion at the level of injury.
2) I tested positive for Hoffmann's sign.
The Hoffmann sign is used by examiners assessing patients with symptoms of Myelopathy (spinal cord compression).
3) I tested positive for Clonus.
Involuntary and rhythmic contractions of muscles when they are stretched, is known as clonus. There can be several clonus causes, which are generally neurological disorders. It is often considered as a sign of several health conditions, related to the nervous system. Lesions in the upper motor neurons are the most common cause of clonus. These are the motor neurons, that arise from the motor region of the cerebral cortex. Motor neurons are basically concerned with carrying impulses from the brain and spinal cord. Any damage to the nerve tract, particularly between the brain and the level at which the peripheral nerves come out of the spinal cord can cause clonus.
The Doctor said he wonders if my PGAD is a miscommunication of the nerves due to the 3 things above, and that whatever injury i have in my spine is locating in my clitoris. i am thinking he may be right.
it's funny (but not really) that the tests he did to determine the above diagnosis are tests which no one else has ever done during all these years i've had PGAD, and all they are simple little reflex tests that can reveal serious complications. while he was doing the tests, i could not help but remember that after all the damn testing my Dad went through with doctors in ATL, it was one doctor at the Mayo clinic in FLA that i watched, alongside my Mom, do these same reflex tests on my Dad that in the end determined he had small fiber neuropathy. the similarity frightens me, and makes me ache with grief....oooh....lord.
alright. anyway...back to the present:
my Pain physician is going to review the pelvic MRI's which I had done a few months ago, which, strangely enough, came back fine, with no injuries or abnormalities.
In the meanwhile, he has ordered 3 MRI's, one of my Cervical Spine (neck), Thoracic Spine and my Lumbar Spine, for THIS COMING MONDAY AND TUESDAY (2/13 and 2/14).
He's sending me to a different imaging center than i went to for the pelvic MRI (thank God). The imaging center he is sending me to is apparently top-notch, and does not make mistakes like the last place i went so they had to re-do my MRI's --and that place was in one of the biggest hospitals in my city!
He prescribed me Topamax/Topiramate, an anticonvulsant that works by decreasing abnormal excitement in the brain, which he says may or may not help.
so as happy as i am that God seems to be leading this Doctor to find the source behind my suffering, i am also scared, because the above diagnosis could be from spinal injury, but they could also be lesions or tumors, which may require surgery, AND THEN, IN THE END, they may not be the source of my PGAD at all, but just other complications!
in the meanwhile, here's something positive: i am throwing Jeremy a birthday party (with Jeremy and Jonah's help) at our new house this Sat nite. i love him so dearly, and wanted to give him a party surrounded by his friends who also love him. he deserves so much for hanging in there with me, and for growing with me through all the awful and wonderful and horrifying and beautiful 17 years we have had together.
Jeremy is truly the love of my life, and our son, Jonah, oh lord, Jeremy and i overflow with love for that boy --it's a love beyond words.
i'm certain the love parents feel their children must pale in comparison to the love our Heavenly Father has for us, His children --even if i doubt His love so often (esp with such suffering)-- i cannot deny that He has been incredibly faithful in helping, healing, strengthening, teaching, blessing and guiding me, my husband, my son. i love Him for that, and am forever grateful.
i pray for Him to help me to continue to trust Him, because this may soon be an agonizing, frightful journey i must go on. if anyone fails in being faithful, it will be me, not Him.