Hello @laureen8844, I would like to add my welcome to Connect along with @jesfactsmon and other members. It's good to hear you were not diagnosed with neuropathy. A pinched or compressed nerve can also cause neuropathic pain. There is another discussion you may find helpful on Myofascial Release Therapy. @jenniferhunter may also have some thoughts on your symptoms.

Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Have you thought about getting a second opinion from a major teaching hospital or multidisciplinary hospital like Mayo Clinic where they coordinate patient care between different doctors/specialists?

Hi Laureen, sorry for your issues and lack of a diagnosis. It does sound like SFN and your biopsy should confirm or deny this. I also get the muscle twitching at times when sitting and reclining but it stops after 10-15 minutes. I think this is a common symptom. I do think that many if not most neurologists are not that knowledgeable regarding neuropathy but hopefully that is slowly changing. In the meantime most of us are having to figure out how to deal with our symptoms; knowing the cause does not always change anything. Pain meds, diet, supplements, and exercise help. I wish you the best going forward and try not to worry too much until you know what is causing your issues. Helen

@laureen8844
Is the twitching occurring just under the skin and is it on both sides or one side of the body? Apparently the twitching can be mistaken for ALS when it actually might be multifocal motor neuropathy. I guess a skin punch biopsy should tell you if you have sfpn. Since you said you have all the symptoms of neuropathy, can you say what are they specifically, I mean besides the twitching? Are you having much pain? Hank

@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."

@laureen8844 I've posted in the past about how frustrating it is that most Connect members are more knowledgeable about small fiber neuropathy than the neurologists we encounter. Yes, SFN doesn't show top on the EMG, and you may need either a biopsy or a "sweat test" to get a correct diagnosis. But then what? Neurologists recommend Gabapentin, Lyrica, and/or Cymbalta and send you on your way.

Good evening @laureen6844, and a special welcome to Connect and the members who struggle with the symptoms of neuropathy. There are quite a few different types of neuropathy. Only SFN (small-fiber polyneuropathy) can be determined by a skin biopsy. This is a simple skin plug that is sent off to one of the few places where the examination of the makeup of a single cell can be determined. Mine was .09% if I recall.....meaning that there just aren't enough nerves in a particular cell to make sure the limb or body part can carry out its assigned job. Without enough presence to do their job......the only thing that happens is that the brain sends back a pain signal.

........Kind of a simple explanation but in the right direction. I mention it because SFN is responsible for not only pain but also some pretty severe failed attempts at sending the right signals.

I am also regretting that you were disappointed with the relationship with your clinician, a neurologist. On the contrary, my neurologist was all over it. Medications with goals for pain reduction. Careful guidelines for gabapentin dosages were preceded by a process of Shared Decision Making........which is a format for making sure that there are no stones left unturned and that you as the patient were an active participant. Feedback needs to be accurate. Medications and treatments like MFR need to have a compliant patient.

And finally......I will attempt to highlight my life partners stroll down the avenue with restless legs and what I call "sleep starts" or twitches in other areas of the body. He started on gabapentin and is now beginning his daily medications with another medication. His first "alert" on his cell phone is at 4:30 p.m. That means he gets started earlier and before sleep becomes a lost cause.

Finally, both of us actively pursue medical cannabis solutions and share our experiences with my MFR therapist and Jay's specialist.

Our efforts are mutually supported and while not at all welcome in our private world, are tolerated with the help of our teams. We both go to every appointment together to take notes and make sure that all the issues are on the table.

I notice that John mentions the multidisciplinary approaches he has encountered. And we support you giving it another go.

May you be free of suffering and the causes of suffering.

Chris