For everyone who responded to me yesterday. Thank you. I am 38 years old, married and have two small boys. I have lived in Arkansas my whole life. Last summer I injured my back during yard work. I initially started with a steroid shot, muscle relaxers, and naproxen but it never got better. My PCP sent me to physical therapy but the therapist was concerned because I had limited movement in my foot. I went for a lumbar MRI and to see a neuro spine surgeon. He said my lumbar was fine but was concerned because I had foot drop. He ordered MRI's of brain, thoracic and cervical spine but all were fine so he sent me to a neurologist. Working in healthcare I knew a neurologist so I got in to see her and she ordered lots of lab work and a lumbar puncture. The only thing that was off was elevated protein levels in my spinal fluid. Over this time my walking became worse and I had developed weakness in my right leg and right hand. I was sent to a neuromuscular specialist in Memphis who initially said I had Cortico Basal Degeneration and he ordered a DATScan. That came back negative so he did a nerve conduction study and said he detected active denervation in my spine and he was concerned that I had ALS and he shipped me to Mayo. The docs at Mayo automatically suspected FND but they ordered another nerve conduction study. They said it was normal but when I got the report last week, as suspected, they did not test any of the areas that the previous physician had detected active denervation in. Always going to leave a question in my mind. Since then my walking has improved through physical therapy but I still have weak muscles, dexterity issues, and seizure-like episodes. I am going to continue to seek answers and battle it. The hardest thing is not being able to provide for my family and help around the house as I could before. It is a hard battle with more questions than answers.

7 Replies

  • Hi its been unable to do what I used to do that gets to me the most, I also have younger kids, its a battle but im not giving up today however in losing but in a week or two I will do all the things I cant do this week x

  • BenjaminT

    Good morning. Your post brought back memories of years of research into polyneuropathy. I will try and be respectful of your medical knowledge but please excuse if I ask stupid questions which I am prone to do.

    I have had four EMGs all documenting chronic and severe axonal sensorimotor polyneuropathy. Have they specified your neuropathy as axonal or demylinating?

    With elevated CSF proteins, does that tend to correlate with neuropathy such as GBS or CIDP?

    I have identical concerns as you about ongoing active denervation results. In early tests that was the case for me. In the last test, they said it was not but they did not replicate all the nerves that had been tested. They simply called it a highly complex and unusual study. Does this mean another EMG should be ordered?

    Is there any family history (genetic) of nerve damage or myopathy? The foot drop is reminiscent of CMT onset.

    Did they run cryoglobulins in your lab workup?

    I am curious because your initial stage has similarities to what I experienced.

    Last question. Do you have access to MR neurography?

    Keep fighting for proper organic diagnosis. Sounds like there is still a lot of ground to be covered.

    Dan / Seattle

  • Hey Dan, they have said that I have peripheral neuropathy. It is non-demylinating. The EMG showed activism denervation in multiple places in my spine. They have not related the elevated Protein in my CSF to anything and have actually not seemed very concerned about it. I have not had any cryogobulins in my lab work yet. I am going to the University of Arkansas for Medical Sciences on May 1 and I believe they offer MR Neurography. My wife also wants me to make an appt with a psychiatrist. Have you or anyone had brain mapping done? I know I still have a lot to learn about all of this and each physician seems to have their own opinion.

  • BenjaminT

    You show more knowledge already than I had gathered in the first ten years!

    I have not had brain mapping. My doctors gave up on diagnostics after so many years and tests.

    I do still think the neuropathy is at the core of my problems. Mine is now classified as idiopathic.

    I got way too immersed in research into the mechanics of axonal injury. Stepping back, I now tend to look at issues like metabolic problems as that affects how the nerves are nourished, connective tissue disorders and neuromuscular junction problems such as ACHR antibodies.

    Sounds like your docs started down the path of motor neuron disease suspicions but then stopped as declared FND.

    I know there are issues of active vs. chronic denervation but have no idea where you stand in that regard.

    With my complex movement disorder with motor symptoms, much of my recent readings have been on the brain stem and the various motor cortex nuclei. In addition, I have now symptoms of dysautonomia.

    How does all of this relate to you?

    Keep testing for organic disease possibilities particularly adult onset versions with possible CNS involvement.

    Only accept the FND diagnosis if you fully agree with it. Once there, it is like a tar pit. Hard to escape from and most providers run from it because of no treatment protocols.

    Keep an eye out for hormonal dysfunction in the HPA axis. This can really aggravate symptom presentation in progression.

    Big yes for any advanced imaging you can get your hands on.

    Glutamate processing changes in the brain is one of my concerns. Anything affecting neurotransmission is important.

    Neuro psychologic testing can be valuable as a rule out particularly if they want to start you on psychiatric meds. I have been there and it masked problems and made dysfunction worse for me.

    Adjust and adapt lifestyle as you can. If a long term problem, I found it necessary to do to raise two daughters and to keep working.

    I am southern boy - Georgia and Tennessee. Moved up here ten years ago to escape heat. Nice to talk to someone from Arkansas.

    Keep searching. May be a long road ahead. Please keep writing. We want to know how things go for you.

    My best to your family. This really hard on them.

    Dan / Seattle

  • BenjaminT

    One more thought...

    I finally got my functional diagnosis last year at Baylor Medical after referral there. A neuro fellow did the work up. She had a worried look on her face as she left the room and said something was seriously wrong. Few minutes later, one of the leading movement disorder specialists in the world waltzed in the room, did no tests, said he could not see any lesion on my old brain MRI, and, then declared with 100% certainty, I had a psychogenic disorder. He declared disability and referral for inpatient treatment and left the room. None of that was ever followed up on by my providers in Seattle.

    My condition has significantly worsened since then.

    Please be insistent on what you want from medicine. This diagnosis can be one of convenience by the profession.

    It has devastated and unnecessarily burdened my family.

    Dan / Seattle

  • Hey, I was once told by a nerve conduction consultant who owned his own practice that nerve conduction tests can come back as normal when the nerves are not 😬

  • thanks for all of the input. I saw a retired neurologist who is now a psychiatrist on Friday and she was very helpful. She helped me understand what I was going through and also provided some insight on other individuals she had helped. She emphasized how much stress had to do with flair-ups and stressed the importance of relaxation. I am still going to continue to seek help for lower back pain and the peripheral neuropathy but I think seeing her helped.

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