I was asked to start a topic describing my diagnosis and issue from it so I started it here and even though some of my diagnosis will cross over it originated with a cervical neck injury. ( I previously had thoracic herniation and tear from injury). The best way for me is to just discuss it a bit and then copy over a list I was asked to make for a teaching hospital showing progression, while it may sound crazy I would just give it some time and understand the diagnosis first. It took 3 years and many doctors and eventually large teaching hospitals ranked tops in neurology to find issue and many , many tests, some very specialized and rare.
My story is I was playing with godchildren in pool and suffered neck injury, a couple hours later lost feeling in both arms, but shortly regained. The doctors now recognize that was a cord injury with swelling of some type, but as I gained feeling shortly after and had test for school next day I did not go to ER for which treatment would have been steroid infusion. Once the cervical cord is damaged or impacted it can cause things to go haywire internally in some people. This began all the symptoms I will list . The treatments I have been through ( many of these before diagnosis ) are physical therapy, multiple alternative therapies to deal with pain, multiple medications, many spine ESI, facet injections, and steroid shots, hypnotherapy, yoga, diet. The testing I have been through is 7 EMG/nerve conduction tests ( only test large fiber nerves so would never reveal small fiber issue), 2 brain MRI, muscle biopsy, QSART testing, sweat testing, punch biopsy ( measures then density of the small nerve fibers ), many MRI of spine, CT, evoked potential, fasting glucose, so much blood work couldn’t even describe each place testing same things and more than last, spinal tap and several ER visits. All MRI normal wear and tear and already existing issues we knew about, nerve conductions / EMG all normal, CT normal, fasting glucose normal, most of blood work early on normal, brain MRI normal. I have been suspected of having MS, muscle disorder,muscular dystrophy, lyme, fibromyalgia, CRPS, and all of it in my head before being diagnosed.
My official diagnosis is :
*sensory neuropathy ( small fiber neuropathy ) [ Diagnosed with QSART then confirmed with punch biopsy ]
*disorder of the autonomic nervous system [ diagnosed with QSART and sweat testing ]
*myelopathy due to another disorder [ suspected B6 toxicity diagnosed with blood work ]
*likely central sensitization
*herniated discs in thoracic and cervical along with annular tears in thoracic
The rare ones to spine health would be the autonomic dysfunction and small fiber neuropathy. In short autonomic nervous system is made up of the sympathetic and parasympathetic system and is in control of everything your body does autonomically ( on its own ) from muscles to glands to organs , the autonomic system controls them all. Small nerve fibers that control function in blood vessels, organs, pain sensation (sensory function) and temperature sensation to name a few. That’s a short description for complicated things to keep it short.
Autonomic dysfunction and small fiber neuropathy have no cure if no underlying reason can be found to treat, what you hope for is that an underlying issue can be treated that is causing the problem. Small fiber neuropathy normally progresses, but can be slowed with early intervention. Unfortunately there is no a great treatment for it as more studies are needed in both medical and alternative treatments. Pain management is an important component because its sensory nerves that are damaged. In the case where small fiber neuropathy is present with autonomic issues the pain management is tricky since the nerve medications act on central nervous system and in turn many times causes negative effects on already present autonomic dysfunction. Children often get autonomic dysfunction in teens known as POTS, which is a bit different than mine, but similar in many ways. I know a friend whos little girl has it from black mold exposure and there is a doctor down in florida who was highly respected doctor and lost his practice after autonomic dysfunction entered his life, he now treats part time focusing only on autonomic patients.
Every doctor that I have seen that is aware of it ( very few have treated patients with it ) has said it is very difficult to treat and even understand all the parts of it. I am told autonomic issues and small fiber issues can be present in paralyzed people due to the cord injury.
The interesting thing about small fiber neuropathy and autonomic issues is several big doctors are studying it for involvement in things such as fibro, CRPS, post traumatic stress syndrome, spinal cord injuries. Many Vietnam soldiers developed these issues after Agent Orange exposure they are finding out now as reasons for pain and wasnt fibro.
I am still hopeful some of the underlying stuff can be treated and I may heal, but for now it’s been a really tough thing to deal with. As of now I am on nerve medication trying it out , muscle relaxers, beta blockers to increase circulation to extremities, high salt diet ( supposed to helps autonomic issues), scheduled for steroid infusion ( 4 day ), sensory rehab at spinal cord rehabilitation place in Houston , possible ketamine infusions down the road, and I am wanted to do 3 week in house pain management and coping course at teaching hospital to cope and get handle on pain with combination of stronger ones but when I do that I may have to give up my job ( safety sensitive ) and I want to explore every option before that.
Autonomic dysfunction and small fiber neuropathy can be mimics for so many things and that’s why when someone says the doctor said fibro I am about 99% sure they have not had testing for these two things and why I always ask if all testing has been exhausted.
I know its long but I have already met about 3-4 people with children with autonomic dysfunction or small fiber neuropathy here recently and I hope this may help them as I am lucky to have alot of options with my work schedule and company I work for to get to the top teaching hospitals to find out what wrong . I am very familiar with it, I spend alot of time reading , searching for things that will help and I am familiar with most of the top hospitals that deal with the autonomic testing.
Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.