Peripheral hyperexcitability syndrome or Spine Issues?

Posted by soccer1477 @soccer1477, Jul 19, 2023

Started in July 2022 with a stomach parasite, and lost 40 pounds, then Sept 2022, worked out, then worked in the yard, and 2 hours later my chest and upper back locked on me,
a week later started twitching on my legs and around my body, went to GP sent me to Neuro, who said, let me test you for Stiff Person Syndrome, all tests came back clear (including EMG), but the anxiety level was huge, in October started with upper back pain, it was horrible, to a point that wanted to go to ER, went to other Neuro, he said I had Bening Fascicualtion Syndrom, Cramp fasciculation Syndrom, and Isaac Syndrome but no test was done (keep in mind that since this started I have only had two cramps), but he still sent me for Lumbar and Thoracic MRI. Results: Lumbar: disc protrusion L3-L4, Left Foraminal disc protrusion L4-L5, Moderate left L4-L5 and Mild bilateral L5-S1 foraminal narrowing, Annular fissures L3-L4 and L4-L5, Mild degenerative Marrow edema L5-S1. Thoracic Findings: Multilevel Disc bulges varying degrees of the spinal canal and foraminal narrowing, moderate left and mild right T8-T9, mild bilateral T9-T10, advanced right/moderate left T10-T11 foraminal narrowing, mild spinal canal narrowing T6-T7-T8-T9-T10, moderate spinal canal narrowing T8-T9-T10-T11, Annular Fissure T10-T11. After these findings, 2nd Neuro called and said the previous diagnosis of Bening Fasciculation Syndrome, Cramp Fasciculation Syndrom, and Isaac Syndrome is in question due to the MRI findings. The problem I'm having now, I still have the twitching in my legs, mostly the right leg, after a Physical therapy session in which the therapist had me do squats with a ball between my knees my hamstring started hurting, which caused my right calf to start hurting and basically gave out on me, my Chiro did some deep tissue massage on the calf that has helped to a point that I'm no longer using a walking stick but have to walk very slow, had to stop driving, but even though the pain in the hamstring and calf has decreased I still have them and sometimes they come really hard. My pain doctor wants to wait for 2nd EMG before trying Epidural shots, the pain in my upper back thoracic is constant but manageable, same as my lower back, as you can imagine my anxiety is very high as basically, I feel I have all the syndromes 2nd Neuro mentioned and also spine issues, not asking for a diagnosis but wondering if anyone has had any similar experience and/or can provide an opinion. Can my back issues be causing my leg and hamstring pain, including the twitching in the calf muscle

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I have Peripheral Nerve Hyperexcitability with a diagnosis of Cramp Fasciculation Syndrome. I also have spinal column and cord issues with stenosis at all levels. I only have stenosis on lumbar spine where nerves exit column. I understand your pain and stiffness and cramping. I don’t understand how the neurologist could give you a peripheral diagnosis without doing an EMG or NCS, that is how they found my peripheral nervous system issues. Hopefully they have put you on medications to help with your symptoms. My primary care doctor was fantastic and used medications I take now long before I had any diagnosis. She treated my symptoms and made me comfortable, I am so thankful for her.

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@partialperson

I have Peripheral Nerve Hyperexcitability with a diagnosis of Cramp Fasciculation Syndrome. I also have spinal column and cord issues with stenosis at all levels. I only have stenosis on lumbar spine where nerves exit column. I understand your pain and stiffness and cramping. I don’t understand how the neurologist could give you a peripheral diagnosis without doing an EMG or NCS, that is how they found my peripheral nervous system issues. Hopefully they have put you on medications to help with your symptoms. My primary care doctor was fantastic and used medications I take now long before I had any diagnosis. She treated my symptoms and made me comfortable, I am so thankful for her.

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Thank you so much for replying @partialperson you are 100% correct, I didn't understand either but have to get another one next month with a new neurologist. I'm currently taking Baclofen 10 mg and Celocoxib 200 mg, but they are only for pain and muscle relaxers. If you don't mind me asking, what kind of symptoms do you have, and also what medications you are taking? Are you able to drive and work? Sorry for the questions, but trying to learn as much as I can. Thank you again

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I worked from 2000 until this February with symptoms and medications. I drove a truck for a living. The laws changed and my medications made it so I could not pass a DOT physical. I take 10/325 hydrocodone, 800 mg Ibuprofen and 800 mg gabapentin 3 times a day for pain. 50mg of baclofen, I was up to 80 but they put me on 400 mg of carbamazepine per day and I was able to reduce baclofen to 60, I am now on 1000mg of carbamazepine and down to 50 mg of baclofen, i have yet to try and drop down to 40 baclofen. I take tizanidine one as needed 4mg, usually two at bedtime to get me settled down and another if I wake up cramped either other half of a 10/325 to get back to settled down. My nights or just sitting still seem to be the worst, especially if I try to much of anything, I am very limited as far as activities or chores. Driving was good for me and made me a good living, now I notice my illness more because my brain is not busy driving. In severe cases or days i take diazepam to keep me out of the emergency room.

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@partialperson

I worked from 2000 until this February with symptoms and medications. I drove a truck for a living. The laws changed and my medications made it so I could not pass a DOT physical. I take 10/325 hydrocodone, 800 mg Ibuprofen and 800 mg gabapentin 3 times a day for pain. 50mg of baclofen, I was up to 80 but they put me on 400 mg of carbamazepine per day and I was able to reduce baclofen to 60, I am now on 1000mg of carbamazepine and down to 50 mg of baclofen, i have yet to try and drop down to 40 baclofen. I take tizanidine one as needed 4mg, usually two at bedtime to get me settled down and another if I wake up cramped either other half of a 10/325 to get back to settled down. My nights or just sitting still seem to be the worst, especially if I try to much of anything, I am very limited as far as activities or chores. Driving was good for me and made me a good living, now I notice my illness more because my brain is not busy driving. In severe cases or days i take diazepam to keep me out of the emergency room.

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Thank you for sharing the information, sending you good vibes. God bless

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