It has been a whole 2 months since I was officially diagnosed with Multiple Sclerosis. I have been struggling with the disease for at least 6 years. I went through a lot of physical therapy and little tests to get to the point of Fibromyalgia. It was an incorrect diagnosis that I accepted in 2013 because I wanted the answer and I wanted medication that would make me start feeling better. One test not even completely carried out and the doctor said it could only be Fibromyalgia. Then came all the medications. One after the other. For the longest time it seemed like I was gaining and/or changing medications monthly. I had side effects, I had reactions, and I eventually had serotonin syndrome. I finally met the proper doctor in May 2015 who removed most of the medications. I was not relapsing at the time so I thought I was getting better. I had periods of ups and downs for the next 2 years in my health. Frequent respiratory and sinus infections that I could not fight off without antibiotics. Not my normal. In March 2017 I relapsed.
I did not know what was wrong. I got really tired and sore, and my feet were tingling. The tingling started to turn into numbness that travelled up my legs, into my abdomen and then chest. It felt like I was being squeezed and my body felt so heavy. Within a week the numbness had travelled down my arms and into my hands and my throat. I panicked and went to the ER. The doctor was certain it was a reaction to my medication, that I had been on for years with no problems. I followed up with my regular pain management doctor in April, and he said he suspected it might be MS and he sent me for an MRI of my brain. The results came back a couple days later abnormal. I worried more. I don't understand all of the doctor lingo. It didn't say lesions. I worried about a tumor or infection. My doctor was not a Neuro so he could not give me a diagnosis but reassured me I had no tumors. It took an additional 2 months to get into a Neurologist 2 hours away from my home. He sent me for more testing and did an EMG that day. Needles in your toe and arch of feet is like torture. He said the results were normal which meant the problem was likely in my brain or spine. It took until July to have a spinal MRI and a spinal tap. All of the results confirmed MS.
At this point I was out of work for a month already because I could not perform my job duties with numb hands. I am in client care and posed a safety risk for my clients and myself. Another brain MRI to have a baseline image prior to medication starting so that my healthcare team could track any progression. I had two lesions in my brain and 2 in my spine with a suspected 3rd. The third MRI had no new activity which gave me the diagnosis of RRMS (relapsing-remitting multiple sclerosis). Fortunately, I am in management at my job and was covered by short and long term disability. Just enough to scrape by. The fatigue that hit me left me not being able to stay awake during the day. I was prescribed a pill that keeps me awake now, but my body still feels the fatigue. I try to rake my yard and get weak quickly, within 10 minutes. I am unstable and will now have a cane. I am too young for a cane. I am too shy for help. The numbness is permanent and will end my current career. I am always asking how I could have the best MS diagnosis (the slowest progressing form) and yet be left with the permanent issues I have that impact such large portions of my life. I am a full-time mom. I have to provide, I have to interact, and I need to set a good example.
It has now been 3 1/2 months out of work and will be another month before I return part time until discharged for no longer meeting requirements. I am bitter and angry. I am lost.
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