I was a senior in college nearly 13 years ago when I started experiencing brain fog, horrible pain in my lower extremities and stubbling over my own two feet. One day it came to the point where I was located sitting in the campus courtyard unresponsive and another student got me to the campus medical office. My last semester of college I was forced to leave school due to these medical issues.
We went to so many doctors and specialist for two years before I just couldn't take anymore. I was given so many different diagnosis from so many different doctors. I was told it was "depression" which I really never felt depressed just in pain. I was told I had one immune disorder after another and I trusted the doctors so I took the meds they ordered. I was given a diagnosis of Systemic Lupus and it seemed I matched all of the symptoms so I took those meds.
Finally about 7 years into that diagnosis, my husband changed insurances and we had to get new doctors. That new primary care doctor ran all the test again because I was responding in a way he thought was incorrect. I was then diagnosed with Fibromyalgia. But by that time I was sick of my children seeing me with so many different pills in my medicine cabinet all the time that I refused the meds for the most part and started self medicating switching from higher doses of Tylenol doses one day to high doses of Motrin the next just to keep the pain under control.
Two years ago I woke one night with horrible pain in my legs again and unable to move. I was rushed to the hospital and after 2+ weeks and so many test again including a lumbar puncture, The new diagnosis- Acute Transverse Myelitis. I fought back and regained some use of my legs that surprised my doctors because so few patients get a measurable recovery.
Well late last year it started all over again. I had unbearable pain, a sense of disorientation, fatigue, my ability to walk was limited, my arms and hands became so painful that I could barely hold my own fork or lift my arms up enough to change my own clothes. I had no chance of tying my own shoes because I wasn't going to bend that far over and be able to sit upright again and stumbling became a daily problem. I have had so many falls in the last year. An AKG and halt monitor showed me having extremely low heart rates and a heart specialist was pushing me towards a pacemaker. I again decided that I wasn't ready to concede that because of the complications of using Comidin. I am 40 years old and don't like the idea of a lifetime of rat poision either! Plus I have noticed that I have the heart palpitations only when the pain is getting up there again and once it is calmed things get better. Lastly, I always look for holistic and herbal remedies first.
We again switched primary care doctors and I was happy that I had a woman doctor because it seemed she wasn't just going to pass me off as a whacky. We went to coordinate everything with her offices as we are required by our insurance. Went through all these test again and she decided it was fibromyalgia and put me on amitriptyline. Which we now know doesn't do much for me.
So here is where I am angry... Last week I took a fall on my patio and landed on a concrete planter. I had absolutely excruciating back pain and ended up in her office. My primary doctor is out so her associate is taking over her appointments. So husband and me tell this doctor the history and he takes my file, spends quite a bit of time reading through it and then ask me what I am taking for the "Vitamin D Deficiency." "WHAT DEFICIENCY?" I ask. I am infuriated to find out that my primary care doctor had this information for 6 months now and never mentioned it in all my visits to her office! I had a reading of 11ng/L which this doctor is running another test now to see how much it has decreased since then. I left his office feeling so hurt and angry. She knew for 6 months and never said a word, wondering if she even reads my test results. If so how could she miss something so significant? How many times in the last six months did I tell her that the pain was unbearable and I was getting desperate for relief? I could have been on the necessary Vitamin D therapy for 6 months now...maybe I wouldn't be in pain! Maybe I wouldn't have fallen! What if this has been the problem now for all these years? I hate to admit it but about 2 months ago the pain was so blinding that I called my husband at work and begged him to help me die because I was certain I couldn't live 30-40 more years like this. What if I had done something rash?! She had the knowledge there in her hands and did nothing!
This doctor called over to the Imaging Center and got me in right away, got me into the lab before walking out the door, scheduled me into a pain therapist immediately, and issued prescriptions for medical doses of Vitamin D, Cymbalta for the fibromyalgia (in case there is still an issue with that underlying), and Vicodin for the immediate pain control. He scheduled me into his appointments for a follow up and is going to check in with me as soon as he gets those test results back next week before my appointment so we have a direction to proceed. I came home, callled my insurance and switched primary care doctors to this new one right away but I cannot get past my anger that "my" doctor just ignored this for the past 6 months!
Sorry this is so long after 13 years of this crap, I just had to vent!
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