Unexplained Sensations and muscle twitching

@drigg97 I'm glad you sent your records to Mayo for review. If you wanted Dr. Fogelson to see them, you could call the Neurosurgery department (or whoever you spoke with there) and request that. You do have spine issues that can cause symptoms. I had elevated reflexes too. I had less on my report and imaging because I had one level involved, but our reports are nearly the same regarding stenosis in the central canal and loss of disc height and a disc osteophyte complex.

I had something called "funicular Pain" that every surgeon who I consulted missed except Dr. Fogelson at Mayo. I was researching and reading medical literature and saw that term in one of his papers that he collaborated on, and I looked it up, so I credit him with helping me discover medical literature with cases like mine.

Funicular pain is called referred pain that doesn't match up to the predictable pain from compression of the nerve roots. It is caused by spinal cord compression. I didn't have nerve root compression and multiple spine specialists could not explain why I had pain all over my body that I showed to them on diagrams I was drawing on a body map of the dermatomes.

Don't let one surgeon's opinion discourage you from seeking other surgical opinions. They can miss things or make excuses if they don't want to take your case, and they can simply just get it wrong. If you have particular symptoms, you need to find a surgeon who is interested in that as a practice area. I thought you might enjoy reading the journey I took in the 2 years prior to coming to Mayo Clinic. I guess I am the patient who outsmarted 5 surgeons and found the answer myself.

Here are all the incorrect answers in order of the non-Mayo specialists who saw me.

#1 Orthopedic spine surgeon: It doesn't look that bad. You will know if it is bad enough to require surgery.

#2 Spine Neurosurgeon: The central nervous system doesn't feel pain.

#3 Orthopedic spine surgeon: You have significant spinal cord compression, but go to this rehab specialist and fix the issues with your leg pain, and then you can come back to me for spine surgery. The only option is a fusion with a PEEK cage and a titanium metal plate done at my group doctor owned surgery center. I will not authorize a blood test for metal sensitivity of implants because you already have an answer because you have a titanium dental crown in your mouth. Also recommended psychiatric help on records, but didn't say this to me.

#4 Spine Neurosurgeon: The arm pain you indicated on the form is related to the cervical spine issue of the C5/C6 disc. The leg pain is not related to the cervical spine and is probably a lumbar issue. Let's do an epidural injection in your neck as a diagnostic procedure, after which, you will let us know if it improved the symptoms. The problem is that the epidural injection took ALL the symptoms away temporarily including the leg pain, and the surgeon ignored the results and did not discuss it with me. I was sent for nerve testing. His nurse also was refusing to schedule followup appointments for me, and when I contacted them about new symptoms of retention in the bladder, the nurse told me to see a doctor about that completely missing that it is a symptom of spinal cord compression.

#5 Spine Neurosurgeon: Because I was denied a follow up appointment with surgeon #4, and met with my neurologist who ordered a new MRI, she discussed the results of the new MRI. I discussed bladder issues with her, she had concerns about the progression of symptoms and she scheduled an appointment the next week with #4's partner who is Surgeon #5. He sent me for a repeat of nerve testing. His advice at the last appointment was to do another epidural injection. What he wasn't telling me was that he was resigning his position 2 weeks later to take a position in a different local hospital system. The epidural injection I had previously had caused new pain and burning electric shocks in my hand that I had to live with for a couple months before it started to subside. It did take away pre-existing pains, but added new ones that were worse. I wasn't going to do that again.

#4 Spine Neurosurgeon: At a later appointment, he told me I could have an inflammatory disease like MS causing my symptoms and he didn't know if surgery would make me better or worse and he didn't want to put me through that, so any surgery with him was denied at this time. Keep on doing physical therapy. He also seemed agitated when he looked at notes from Surgeon # 5 and said "I hope he didn't just copy my notes" here about the consult I had with Surgeon #5. Clearly at this point, it was obvious that the resignation had been tendered.

I started looking at a surgeon at Mayo Clinic and found this literature with a case study similar to mine.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3111492/ I sent a copy of this literature with my records and a letter explaining my symptoms to Dr. Fogelson and I said I think this may be like my case, and that 5 surgeons had turned me down. I got a response about 6 weeks later.

#6 Neurosurgeon at Mayo Clinic Dr. Fogelson offered spine surgery as either a single level fusion of C5/C6 or disc replacement if I wanted that, but told me I wasn't a great candidate for disc replacement because of some instability. He told me he would do a fusion without hardware if I was willing to stay in a neck brace for 3 months until it fused (which is what I did). He told me about possible vocal cord paralysis as a risk of this surgery, and if that were to happen, there is a procedure with an implant that could resolve it, and he was the only surgeon I saw to tell me about the risks. He also explained my imaging and showed me the problem area. He also told me I was the only patient that came to him because of the paper I found with the reference to funicular pain. There is no diagnostic test for funicular pain, but when your epidural injection takes away all the pain you have everywhere when you only have cervical spinal cord compression, that is a big clue that was described in the literature. The only proof of having Funicular pain is that decompression surgery of the cervical cord resolved all the pain.

I bet you are wondering if I told the other surgeons about funicular pain. I had come the closest with Surgeon #4 who had the not so nice nurse.... and you bet I did! I wrote a kind letter explaining how having surgery at Mayo resolved all those issues, and apparently I had funicular pain. I included a copy of the literature. I never got a response, and I've wondered if his people gave him the information.

I think Mayo can sort this out for you and I hope you will hear good news soon. I wish I had not wasted 2 years chasing surgeons who didn't want to help me.

Will you keep me posted on the progress with getting help for your spine and other symptoms? I have a lot of hope that Mayo will be your answer.

Hi @driggs97, this is Rachel. Yes, please keep me posted on your SFN test results.

I contend with Central Sensitization Syndrome {CSS} as explained in the video from Dr. Sletten. CSS is an umbrella term that defines a big picture. Under that umbrella I have multiple diagnosis. Essentially my central nervous system and peripheral nervous system are in a heightened state which means I experience a whole lot of unique, chronic symptoms. Yes, it does affect my autonomic system and yes I have experience muscle twitching.

When do you find out your test results?

@drigg97 Well, keep digging for diagnoses. It's so important to rule out possibilities, but exhausting in the mean time. I feel for you. How long did you say this all has been going on?

First of all you described small fiber sensory neuropathy along with autonomic neuropathy. You are experiencing the same issues I’ve had for 13 years. Because it’s slowing your heart rate it shows the autonomic neuropathy is killing the nerves in the top part of your heart. My heart is so bad I have a pacemaker and am now on hospice. These neuropathy’s usually occur together. It’s unfortunate but this is the gift that keeps on giving ( sarcasm). What has helped me with the symptoms is medical marijuana gummy bears, and Bupropn HCL 300mg XL and Kratom. It was by accident I was placed on this medication and it has taken my symptoms from a 10 to a 3. I’ve deteriorated bad enough I am now on hospice.
Most physicians don’t have a clue what this disease is like and how horrible it affects every aspect of your life. Unfortunately there is no cure and the only thing you can do is treat the symptoms.

Hello @drigg97
I have just read your posting. I am hoping you are doing better and have some answers by now. I have also been dealing with very similar unexplained symptoms such as numbness in hands in feet, twitching all over body, facial sensations, tremendous amount of pain on bottom of feet, and other different stronge nerve sensations of as well. This symptom started after first experiencing some back pain, that then turned to sciatica pain, then to numbing of feet, then to numbing in hands, then to twitching everywhere (within 6 weeks). After many visits to doctor, they have ruled out some big items, no als, no ms, EMG is within range, MRI of brain and came back with no explanation. Doctors have mentioned, fibro and small nerve neuropathy but I don’t this fit. I am still trying to figure out what can this be, as it only seems to be changing. I hope you have found some new answer and could possibly share?

Same experience here, and have been told there is nothing that can be done except for drugs to treat the symptoms.

😡
They Want to resolve all with drugs not the root problem of the issues 🙄

Have had much the same unexplained symptoms. Have decided at the age of 76 and with a host of other yet to be explained pains that come and go but the pain in my right side, waist down, when I woke this morning panicked me. First time so bad it nearly took me down. My doctor said I have some stenosis in the lumbar area. I am afraid of any surgeries. But this is the first such extreme pain.

Had trouble with right side for a week now and pain gone now but lurking in the background, lol!

I get twitches, etc., in that leg often and they are unpredictable. I thank goodness I have so much “stuff” in the house, I manage to not hit the tile floor. Yet.

Glad I read this….but not glad you are suffering so much.

Peace and love to you.

I understand your frustration with all the doctors. I was in two hospitals and saw numerous doctors before I found one who could help me. Best of luck to you all.
Kat

Hey there! Did you ever get any answers to what you were experiencing?