There are many reasons for my silence. I have been going through some very rough times in my life lately. Going to Mayo did help shed some light on a few subjects. I have seen a neurologist, medical geneticist, urologist, and had quite a few tests. Dr. G (Medical Genetics) began to do some blood work trying to help determine which type of Mitochondrial disorder I have. From what I have gathered looking at the lab work, it sppears as though my amino acids are much lower than they should be. Amino acids are the building blocks of protein, and protein is the building block of muscle. So, it makes a lot of sense that I am having muscular symptoms which is indicative of a Mitochondrial disorder. Granted, this is entirely speculation on my part as I have not actually received a call from Dr. G about the results and what they mean. But, I have done a lot of reading and research on Mito and I have become pretty knowledgable on a lot of the mechanisms involved.
Dr. L (Urologist and IC specialist) was absolutely wonderful. I saw her Physician's Assistant more than I saw her, but she has prescribed Physical Therapy. The reason I am going to PT is that in addition to Interstitial Cystitis I have what is called Pelvic Floor Tension Myalgia. Essentially it means that the muscles in my pelvic area (including the bladder area as well as the area of reproductive ograns) are much tighter than they should be, which causes extra pain. She also asked me to do an Intake and Output diary (not something I was thrilled to do, but I did it anyway).
I saw Dr. J and Dr. S in neurology for seizures. It looks as though one of my spell types is not seizure activity after all, which is definitely good news. However, it is likely that at least one of the other types is seizure activity, if not both. Right now though, the main issue is the spell, which is possibly what the neurologist called "Involuntary Behavioral Events" that resemble seizures. So, now they're talking about Cognitive Behavioral Therapy. I am scheduled for my first session next week at Mayo, and then hoping to take over some of that closer to home, as Mayo is over two hours away.
Today I started Physical Therapy, and my therapist is really great. She is doing some things that I never really associated with IC, but so far they do seem to be helping me! I am thrilled that I have responded this well to the therapy, and am anxious to see how things go from here. It looks as though I will be seeing her two times a week for at least four weeks.
Later today I will be going to get a massage and am hoping that my body will be able to handle it. I have been in a lot of pain lately and am hoping that this will help.
Please also keep my great grandma Ev in your prayers. She had a stroke over a month ago and has been rehabbing in a nursing home, but has now started to go backward. She is refusing to work with the therapists and has stopped eating and drinking fluids. I am not sure how things are going to turn out with her, but I am trusting in God to know what is best for her, and my family. It is difficult to see a lady who has been so with it and verbal turn into what she has become.
So for now, just taking it one day at a time. That's all I can do.
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