I swear the past few days it seems that all I do is complain, but please know that I am not trying to be a complainer. I am just getting so frustrated with the medical bull cucka that I have to go through. I have not worked for 13 months now because I have struggled to take care of my own needs, let alone my family's needs. Thank goodness for a great husband, great friends, and amazing family that are always here to pick me up when I fall. There are literally days where I fall more than once, and I have to have help to get back up. Geez, you don't realize just how important your thighs are until one or both of them give out and you face plant or fall backwards due to the instability. I am trying to maintain as much independence as I can. It is so hard for me to ask for help. I feel so guilty. I beat myself up because I can't even take care of my own family.Today is day 16 of migraine, and the pain is still pretty intense. My hair literally hurts. Pain shoots down my back when I touch my hair. I know you are thinking that hair can't hurt, but really it can. It is associated with allodynia, which is a pain resulting from a stimulus (such as moving the hair) which would normally not cause pain. I can live with the allodynia. What is hard is dealing with excruciating pain. A pain so intense that it is hard to think, talk, write, etc. I keep praying for a miracle, hoping that I will go to bed and wake up and my migraine will be less severe. I have had a migraine almost daily for over a year, but never have I had a migraine with such intense pain last this long. I would not wish this type of pain and suffering upon anybody.
For the past few months I have been regressing instead of progressing. The urologist I am seeing is convinced I have A typical MS, but my MRI scans show no signs of plaque. The neurologist told me that the plaque will not always be seen on MRI if MS is in its early stages. When I went to the Neuro-opthamologist, she told me I had been referred to her due to concern of high cerebral spinal pressure. She found just the opposite, my spinal pressure was on the low side. She also noticed that my eyes and mouth were really dry. I didn't think much of it, because some of the meds, like effexor, that I am on have a side effect of dry eyes and mouth. The exam with the neuro-opthamologist was about five hours long, but they were very thorough. At the last minute, they decided to do one more test on me due to the mouth and dry eyes. They put drops in my eyes and then placed filter paper in my eyes. I had to keep my eyes closed for 5 minutes. Based upon the reading of the filter paper, they could see how much tears my eyes were producing. Of course, my eyes weren't producing much, so I had to go have some antibody lab tests drawn. I also have to put drops in my eyes 4 times a day and an ointment at night. The antibody tests that they drew were testing for Sjogren's Syndrome, which came back positive. When I went to the new neurologist, he told me that I didn't need to be too concerned unless the results came back in the triple digits. He sent me for more labs, and of course some of the results came back in the triple digits. Sjogren's Syndrome is an auto-immune disorder where your white blood cells attack all of the fluid producing glands in your body, such as saliva, tears, gastric juices, etc. It can also mimic MS. When I went to the MS specialist, he told me I needed to get into a Rheumatologist ASAP because I was exhibiting s/s of MS and Sjogren's. He says that whatever it is, I need to start treatment as soon as possible. He wants me to go back to him after I have seen the Rheumatologist. There is no Rheumatologist in the Salt Lake area, that accepts my insurance, that is accepting new patients until July at the earliest. Dr. Foley's PA (MS specialist) tried calling, and even when she called we were told no. So, I found a Rheumatologist in Ogden that they send a referral to. I called yesterday. They said it takes 5-10 days for them to review my records, and based on my "priority" level I could be seen within a couple of weeks, if urgent or months if it is minor. I am frustrated and getting so down because I am living such a non-productive life. I need somebody out there to work their magic and get me into a Rheumatologist, please. The sooner I can start treatment for Sjogren's or MS, the sooner I can start to feel better, hopefully. Until then...
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