My experience with Small Fiber Neuropathy

@laureen8844 Hi Laureen. I understand your position. I was there too for 2 years while my doctors didn't understand what was wrong. I found the answer in medical literature that all of them missed. You might be on the same path which for me was caused by spinal cord compression in my neck. I had what was called "funicular pain" or referred pain which is caused by compressing the spinal cord. I had an old whiplash injury that had herniated at C5/C6 and bone spurs grew trying to stabilize it. 5 surgeons missed it and misdiagnosed me and all refused me for surgery even though all could read the MRI. One even told me to go to rehab, fix the leg pain issues I had and then come back. The problem is, there was nothing I could do to fix something caused by the disc-osteophyte complex pressing 5mm into my cervical spinal cord and he had no clue. My very first symptom of cord compression was pain in my ankle when I turned my head. I could turn that on and off with my neck position in the early stages. It progressed to where I had spontaneous muscle contractions in different places in arms and legs, and I could change my spine position and stop them which also changed where I felt pain. I had pain all over my body which was a bit different when laying down vs standing. The thing about this type of problem is it sneaks up on you gradually. Some patients don't have pain. I also had muscle loss on the back of my arms and shoulders. After 2 years it was to the stage of getting numbness in my arms and legs and if I bent my neck forward, I got an electric shock down my entire body. I had tracked the progression of my symptoms over several months on body diagrams which was good and bad. It was clear to me what was happening, but it scared a local surgeon out of helping me when he saw the extent of the issues. I came to Mayo for my 6th spine consult and had surgery which completely resolved this problem.

Prior to becoming a Mayo patient, I had just been dismissed by a local surgeon when I found the medical literature, and no doctor at that facility would help me address this with him, even doctors who had known me for several years. I had to seek help elsewhere, and I found the literature because I looked up the term when I saw it in a paper by a Mayo surgeon, so I knew I had found a doctor who would understand this problem and not dismiss me. I became his patient and had a great outcome from my surgery which changed my life. I had lost the ability to hold my arms up, and when I got the coordination back, I expressed my gratitude to him with a portrait that I painted in watercolor.

I recommend that you get a current MRI image of your spine, cervical, and also full spine to rule out problems lower down and a consult with a new spine expert. You can have an asymptomatic lumbar issue like the lumbar bulging disc I have which contributes to generating pain when the cord gets touched in 2 places at the same time. If you have cervical cord compression, it's hit or miss what part of the bundle is getting squished and that changes every time you move, so it isn't tracked on the dermatome maps of the spine. Those tell where there is compression of a specific nerve at a specific level as it exits the spinal cord. There is no test to confirm funicular pain; only that it is resolved by decompressing the spinal cord with surgery. If cord compression advances too far, the axons die causing permanent damage that shows up as a whitish area inside the spinal cord, so early intervention is best. I did not have any visible damage to the cord on my MRIs, and a lot of my muscle has come back, but not all. I still have a deficit of perhaps 10% muscle bulk that has not returned and I am 4 years post op. I'm not as strong as I used to be, and also have thoracic outlet syndrome which affects my arms by nerve compression in the neck and shoulder. It sounds like your neurologist has looked for possible nerve compressions in peripheral areas, but they may not have considered a spinal cord problem.

I began my relationship with my Mayo surgeon with a request for an appointment, copies of the medical literature I found, and a letter that explained why I thought my case could be like those I found. Make sure you pose that as a question instead of diagnosing yourself. No surgeon would like that, but when you ask, could I possibly have funicular pain like this case in literature?, they have to consider it. If the doctor doesn't understand about funicular pain, move on until you find one who does. I would recommend Mayo. I did not find the level of expertise needed for my case anywhere else. My Mayo surgeon, Dr. Jeremy Fogelson, was not only intelligent, he was kind and compassionate. I had talked to enough surgeons and read enough literature at that point to know I was in front of someone who was a real expert and respected in his field with the knowledge and interest in taking complex cases that others had refused. Let me know if I can help further. If you can come to Mayo, you will be in expert hands and I highly recommend my surgeon. Here is my patient story and the medical literature that brought me to Mayo.
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/
Excerpts from "Cervical cord compression presenting with sciatica-like leg pain" from the European Spine Journal
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3111492/
"Funicular leg pain is a rare presentation of cervical cord compression."

"Leg pain or sciatica is a rare ‘false localizing’ presentation of cervical cord compression and there has been only a few cases described in literature [1–5]. The term sciatica has often been associated with disorders of the lumbar spine and pelvis, and we often tend to overlook other parts of the spine in the search for its cause. We report two cases of cervical cord compression, which presented with sciatica-like leg pain. Each case is unique and different from one another in their presentation and concurrent spinal lesions. We hope that the discussion of these cases and the accompanying literature review will make us more aware of this uncommon presentation of leg pain in cervical cord compression."

Jennifer, you already know how I feel about what you've been through. My heart goes out to you too @laureen8844. Jennifer, I respect you so much and my 2nd response after empathy for all of you (Hank's Linda and practically everyone on Connect), is, can I hire you? @jesfactsmon. I care deeply about you all and will be upholding you in prayer. Blessings, Sunnyflower 🙏🤗

@laureen8844 The first neurologist I saw was excellent, and diagnosed idiopathic pn. At that point I was feeling mild pins and needles in my legs and feet. When pain began and progressed quickly to unbearable burning pain in the balls of my feet. When I went back to the neurologist, he told me he was retiring. I was referred to another one, and he's still my neurologist.

I don't want to get started with a blow by blow account, but you can read it at a thread about our neuropathy journeys.

What caught my attention was your making a connection between twitching and sfpn. At my last appointment I asked the neurologist if he had noticed the involuntary twitching. He said that he had, and told me that it was RLS, which can lead to twitching in any other place. I don't think that it's noticeable, but my wife is certainly aware of it. When we hold hands it's annoying to her sometimes.

I now have involuntary motions in pretty much every body part. It's worse at night when I'm going to sleep. Twitches fire every second, and often there are multiple motions simultaneously. I can't make them stop for more than a few seconds, and that takes intense concentration. I usually have a strong impulse to scream, but I make myself moan instead. Sometimes I have to get up and move around, eat a snack, read or play a game on my phone. Usually the twitching calms down after a while, and I can eventually go to sleep.

During the day, I think that the twitching is going on all the time, but I guess I'm used to it, and only notice it if I think about it.

As if idiopathic sfpn and autonomic polyneuropathy weren't enough.

Before sfpn I was being treated for major depressive disorder and PTSD and anxiety disorder. Chronic pain has added a new dimension to the mental health issues. My neuropathy is progressing rapidly enough to be concerning to the neurologist. He recently added prednisone to my long list of medications, with the hope that it will slow down the progression.

I have my annual appointment with the sleep doctor Tuesday, and I'm going to ask her about the twitching. (I have sleep apnea and use a Bipap machine.) The number of apneic events has gone up around tenfold over the past year. I'd like to know if there's a connection between twitching and sfpn and sleep apnea. I suspect that she won't be able to give me any kind of answer.

A couple of nights ago I had a bad two hours of twitching, and finally got up. I took a muscle relaxer, which may have helped. I think I need to send my neurologist a note, and maybe have an appointment with him soon.

Finding a competent, compassionate, proactive doctor to a wonderful thing. I hope you will get the help you need soon.

Jim

Hank, I’ve been dx with peripheral neuropathy. It’s much worse in my right leg than my left. The doctor told me it couldn’t be. It would be the same in both. I quit going to him. My symptoms are SEVERE burning in legs and feet. Often weakness also. I’ve tried taking the meds and had terrible reactions. Do you have any suggestions what I should do now? I’m 74 and don’t know how much longer I can stand the pain. I do see a pain specialist and take pain pills. Thank you for any comments you have for me.

Jim. Thank you for you response . I am sorry to hear what you are going through . Where you tested fir ALS and MS . Stay well

Jennifer, you already know how I feel about what you've been through. My heart goes out to you too @laureen8844. Jennifer, I respect you so much and my 2nd response after empathy for all of you (Hank's Linda and practically everyone on Connect), is, can I hire you? @jesfactsmon. I care deeply about you all and will be upholding you in prayer. Blessings, Sunnyflower 🙏🤗

@momalin
I hope for your sake that Jennifer's suggestion is correct, i.e. pinched nerve. From what I have heard, neuropathy does present bilaterally as a rule, so being mostly on one side could be a hopeful sign that it is not sfpn. However, if it is, then sorry to say there is no real cure in most cases. One can hope it will subside on it's own, as it does for a few. But otherwise PN treatment pretty much boils down to pain treatment. Marilyn @steeldove just mentioned the usual course followed by doctors: gabapentin, lyrica and cymbalta (duloxetine). Many here resort to cannabis (marijuana or cannabis oil) which brings relief to quite a few, some try opioids (often with disappointing results). Then there are supplements that are frequently recommended for PN, such as r lipoic acid and benfotiamine. Also curcumin for inflammation. If you have any weak spots healthwise in your lifestyle (diet, exercise, sleep and stress level), work on improving in those area as well. I wish you well and hope that in your case what you have is curable.

By the way, you said you were dx'd with neuropathy. By what method did your doctor make this diagnosis? Just wondering. Best, Hank

@laureen8844 The first neurologist I saw was excellent, and diagnosed idiopathic pn. At that point I was feeling mild pins and needles in my legs and feet. When pain began and progressed quickly to unbearable burning pain in the balls of my feet. When I went back to the neurologist, he told me he was retiring. I was referred to another one, and he's still my neurologist.

I don't want to get started with a blow by blow account, but you can read it at a thread about our neuropathy journeys.

What caught my attention was your making a connection between twitching and sfpn. At my last appointment I asked the neurologist if he had noticed the involuntary twitching. He said that he had, and told me that it was RLS, which can lead to twitching in any other place. I don't think that it's noticeable, but my wife is certainly aware of it. When we hold hands it's annoying to her sometimes.

I now have involuntary motions in pretty much every body part. It's worse at night when I'm going to sleep. Twitches fire every second, and often there are multiple motions simultaneously. I can't make them stop for more than a few seconds, and that takes intense concentration. I usually have a strong impulse to scream, but I make myself moan instead. Sometimes I have to get up and move around, eat a snack, read or play a game on my phone. Usually the twitching calms down after a while, and I can eventually go to sleep.

During the day, I think that the twitching is going on all the time, but I guess I'm used to it, and only notice it if I think about it.

As if idiopathic sfpn and autonomic polyneuropathy weren't enough.

Before sfpn I was being treated for major depressive disorder and PTSD and anxiety disorder. Chronic pain has added a new dimension to the mental health issues. My neuropathy is progressing rapidly enough to be concerning to the neurologist. He recently added prednisone to my long list of medications, with the hope that it will slow down the progression.

I have my annual appointment with the sleep doctor Tuesday, and I'm going to ask her about the twitching. (I have sleep apnea and use a Bipap machine.) The number of apneic events has gone up around tenfold over the past year. I'd like to know if there's a connection between twitching and sfpn and sleep apnea. I suspect that she won't be able to give me any kind of answer.

A couple of nights ago I had a bad two hours of twitching, and finally got up. I took a muscle relaxer, which may have helped. I think I need to send my neurologist a note, and maybe have an appointment with him soon.

Finding a competent, compassionate, proactive doctor to a wonderful thing. I hope you will get the help you need soon.

Jim