In 2016 I began to feel I'll and became severely symptomatic and my primary care physician kept dismissing me. Throughout the year, I continued to develop new and bizarre symptoms. I ultimately had a seizure in December 2016 and the ER Physician admitted me as I was unable to walk, move my left foot at all, and I was cognitively out of it, basically. He felt as if I may have a brain tumor. After a couple MRI's and blood tests, there was nothing discovered too out of the ordinary (other than some cervical stenosis). After day 5, they finally ran a simple B12 test. The results were astonishingly low. The DR said that after a series of B12 injections and monthly injections for the rest of my life, that I should start to feel better after about a month and fully well after 3 months. Well, that never happened. Apparently, I had some permanent damage caused by the difficiency which was undiagnosed for so long. On top of that, I began to feel worse in a lot of ways. I was experiencing body wide severe burning pain, autonomic dysfunction, my left foot was still immobile, and I was unable to stand for more than 3 or 4 minutes or walk even 20 or 30 yards without falling. I had 3 more MRI's of my spine/sacrum along with an EMG/nerve conduction test. The MRI's showed that I have 8 Tarlov Cysts along my thoracic region of my spinal cord. The nerve conduction/EMG test revealed that I should have a pinched nerve in the S2 region. However, the MRI of my sacrum showed no evidence of a pimched nerve in my S2 region. I saw several Doctor's/Neurologists and nobody had any idea what was wrong. My Neurosurgeon finally referred me to a higher level of comprehensive care/research facility at Duke. Once there, the Neurologist ran a series of his own tests, including a skin biopsy on various areas of my left leg (my worst side, the left), a spinal tap/lumbar puncture, another MRI of my brain, another EMG/Nerve conduction test, X-rays, blood tests, and various neurological exams. There were some things that were "off", but nothing to answer what was wrong until the biopsy results returned. It showed that I have Small Fiber Neuropathy and Autonomic Neuropathy. This would explain my widespread pain (burning, stinging, numbness, pins/needles, cutting, crawling, stabbing, etc. sensations along with electrical shocks that pass through my body) and autonomic dysfunction (inability to sweat, swallow, digest food, exercise, difficulty controlling temperature, fatigue, incontinence, etc.) and a myriad of other symptoms. There's no treatment for this except for pain management and no cure. It's a progressive illness unless the underlying condition that is causing the small fiber neuropathy is identified and treated. As of now, mine is considered "idiopathic" due to not being able to find the underlying cause. Even though this began around the time of my B12 deficiency, they say its not the cause because it should have stabilized once my B12 was corrected (which it had after all of the injections during the first month after I was released from the hospital). After about 8 months, I began to develop reoccuring fevers that would come and go and severe fatigue and body aches during one of these flare-ups. I was tested for several disorders and tested positive for Lyme Disease. After referral to a an Infectious Disease Specialist, he determined that it was a "false positive". I retested again 2 months later and did not test positive again. To this day, I still have the small fiber neuropathy and autonomic neuropathy along with the unidentified cause for my reoccurring fevers (which appear for around 4-5 days about every 5-6 weeks apart). I've seen several specialists and nobody can identify the cause for this or the overall cause for my specific type of neuropathy. This has been a 3 year long journey, thus far, and I'm still searching for answers. My Dr. feels that I have some sort of rare autoimmune disorder or a genetic cause. I'm adopted (given up at birth) and have no medical information regarding my biological parents/family. I have not had a genetic test yet. I've been told by my specialist's that I need to go to John Hopkins or similar to have them look for rare forms of autoimmune or similar diseases. So, that's where I'm at. I'm here dealing with a progressive form of small fiber/autonomic neuropathy without a known cause. Also, I still don't know if those Tarlov Cysts along my spine are playing any part of this as they're so rare, especially in the thoracic region, that Doctor's are unfamiliar with them and the affects on a person if the cysts are symptomatic. Anyway, one day whenever I have the funds I will make it to John Hopkins. I really miss my life before all of this but I refuse to give up on every single thing that I love to do. I can't physically do much, but with the help of my family pushing me along in my wheelchair, I can/will still attend concerts. Music has saved me, and that's a fact. It's the activity that makes me 😊🤘
Bringing another meaning to rock and roll. ♿ wheelchair life.
In 2016 I began to feel I'll and became severely symptomatic and my primary care physician kept dismissing me. Throughout the year, I continued to develop new and bizarre symptoms. I ultimately had a seizure in December 2016 and the ER Physician admitted me as I was unable to walk, move my left foot at all, and I was cognitively out of it, basically. He felt as if I may have a brain tumor. After a couple MRI's and blood tests, there was nothing discovered too out of the ordinary (other than some cervical stenosis). After day 5, they finally ran a simple B12 test. The results were astonishingly low. The DR said that after a series of B12 injections and monthly injections for the rest of my life, that I should start to feel better after about a month and fully well after 3 months. Well, that never happened. Apparently, I had some permanent damage caused by the difficiency which was undiagnosed for so long. On top of that, I began to feel worse in a lot of ways. I was experiencing body wide severe burning pain, autonomic dysfunction, my left foot was still immobile, and I was unable to stand for more than 3 or 4 minutes or walk even 20 or 30 yards without falling. I had 3 more MRI's of my spine/sacrum along with an EMG/nerve conduction test. The MRI's showed that I have 8 Tarlov Cysts along my thoracic region of my spinal cord. The nerve conduction/EMG test revealed that I should have a pinched nerve in the S2 region. However, the MRI of my sacrum showed no evidence of a pimched nerve in my S2 region. I saw several Doctor's/Neurologists and nobody had any idea what was wrong. My Neurosurgeon finally referred me to a higher level of comprehensive care/research facility at Duke. Once there, the Neurologist ran a series of his own tests, including a skin biopsy on various areas of my left leg (my worst side, the left), a spinal tap/lumbar puncture, another MRI of my brain, another EMG/Nerve conduction test, X-rays, blood tests, and various neurological exams. There were some things that were "off", but nothing to answer what was wrong until the biopsy results returned. It showed that I have Small Fiber Neuropathy and Autonomic Neuropathy. This would explain my widespread pain (burning, stinging, numbness, pins/needles, cutting, crawling, stabbing, etc. sensations along with electrical shocks that pass through my body) and autonomic dysfunction (inability to sweat, swallow, digest food, exercise, difficulty controlling temperature, fatigue, incontinence, etc.) and a myriad of other symptoms. There's no treatment for this except for pain management and no cure. It's a progressive illness unless the underlying condition that is causing the small fiber neuropathy is identified and treated. As of now, mine is considered "idiopathic" due to not being able to find the underlying cause. Even though this began around the time of my B12 deficiency, they say its not the cause because it should have stabilized once my B12 was corrected (which it had after all of the injections during the first month after I was released from the hospital). After about 8 months, I began to develop reoccuring fevers that would come and go and severe fatigue and body aches during one of these flare-ups. I was tested for several disorders and tested positive for Lyme Disease. After referral to a an Infectious Disease Specialist, he determined that it was a "false positive". I retested again 2 months later and did not test positive again. To this day, I still have the small fiber neuropathy and autonomic neuropathy along with the unidentified cause for my reoccurring fevers (which appear for around 4-5 days about every 5-6 weeks apart). I've seen several specialists and nobody can identify the cause for this or the overall cause for my specific type of neuropathy. This has been a 3 year long journey, thus far, and I'm still searching for answers. My Dr. feels that I have some sort of rare autoimmune disorder or a genetic cause. I'm adopted (given up at birth) and have no medical information regarding my biological parents/family. I have not had a genetic test yet. I've been told by my specialist's that I need to go to John Hopkins or similar to have them look for rare forms of autoimmune or similar diseases. So, that's where I'm at. I'm here dealing with a progressive form of small fiber/autonomic neuropathy without a known cause. Also, I still don't know if those Tarlov Cysts along my spine are playing any part of this as they're so rare, especially in the thoracic region, that Doctor's are unfamiliar with them and the affects on a person if the cysts are symptomatic. Anyway, one day whenever I have the funds I will make it to John Hopkins. I really miss my life before all of this but I refuse to give up on every single thing that I love to do. I can't physically do much, but with the help of my family pushing me along in my wheelchair, I can/will still attend concerts. Music has saved me, and that's a fact. It's the activity that makes me 😊🤘
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