Do You Too Have Small Fiber Sensory Neuropathy?

I had decompression surgery with no fusion between l3 and l4 already but it didn't last. It helped me for 4 months and then the symptoms came back. I've had many many mris, x-ray etc. I just can't find anyone who knows what to do about the twitching. I've gone out to Stanford University and met with a surgeon there she said she would do fusion she's the one who said my symptoms are not typical.

@lucylaughs
I also deal with obesity, bladder control issues (tied to my cervical spine stenosis/myelopathy), Hashimoto’s/hypothyroidism (tied to having one lobe removed due to large suspicious nodule), sleep apnea, brain fog, A1C elevated/heading towards prediabetes, congenital spinal stenosis/arthritis/degenerative disc disease, small fiber neuropathy (possibly linked to metabolism issues), etc. and I have had 6 surgeries in 4 years! Not fun and in lots of pain so can relate. I did take Cymbalta for a couple years until it stopped working for me. I am currently just taking extra strength Tylenol because I cannot take NSAIDs due to gastritis and esophagitis. I take Wellbutrin/bupropion for depression (from chronic pain and menopause hormone roller coaster) .

It is really good you are reaching out to others for help and I hear you about using canes, walkers, etc when you are in your 50s. I have the walking aids for when I need them in my home and haven’t started to use them in public yet (hope to delay as long as possible). My dogs and cats are all rescues (used to foster and I have multiple foster failures 😉) and they are definitely daily therapy for me as companions that give constant love and enjoyment. They run around and my instability in walking has me regularly pause and look down before stepping in different directions to avoid stepping on my pets (they all love to congregate around my feet). I also need to be careful not to trip or fall on their toys.

I definitely use grabbers to get things I cannot reach easily (also have a hard time bending down to pick things up due to cervical and lumbar spinal fusions and muscle weakness/numbness). My shower grab bars and built in chair are so very helpful. I take one day at a time and work within my energy levels. I prioritize each day what is most important and do things within my best energy times during the day.

I wish you the best continuing to build your support system to help improve your quality of life!

I had decompression surgery with no fusion between l3 and l4 already but it didn't last. It helped me for 4 months and then the symptoms came back. I've had many many mris, x-ray etc. I just can't find anyone who knows what to do about the twitching. I've gone out to Stanford University and met with a surgeon there she said she would do fusion she's the one who said my symptoms are not typical.

@annie1
I looked up what causes muscle twitching and this is what AI summarized:

“🤔 Causes of Muscle Twitching

Muscle twitching, also known as fasciculation, can be caused by a variety of factors. Here are some common causes:
⚡️ Common Causes

Fatigue: Overexertion or prolonged physical activity can lead to muscle fatigue, resulting in twitching.
Stress and Anxiety: High levels of stress or anxiety can trigger muscle spasms or twitching.
Dehydration: Lack of fluids can lead to electrolyte imbalances, causing muscle twitching.
Nutritional Deficiencies: Deficiencies in vitamins and minerals, particularly magnesium, calcium, and potassium, can contribute to muscle twitching.
Caffeine and Stimulants: Excessive consumption of caffeine or other stimulants can lead to increased muscle activity and twitching.
Medications: Certain medications, especially those affecting the nervous system, can cause muscle twitching as a side effect.
Nerve Damage: Conditions that affect the nerves, such as neuropathy or multiple sclerosis, can lead to twitching.
Medical Conditions: Some medical conditions, like amyotrophic lateral sclerosis (ALS) or muscular dystrophy, can cause persistent muscle twitching.
🩺 When to Seek Medical Attention

If muscle twitching is persistent, accompanied by weakness, or occurs in conjunction with other concerning symptoms (like pain, numbness, or changes in vision), it’s important to consult a healthcare professional for a thorough evaluation.
Understanding the underlying cause of muscle twitching can help in managing and treating the condition effectively. If you have specific symptoms or concerns, feel free to share!“

@annie1
I live in New England so not too far from you. It sounds like you should be seeing orthopedic spine specialists for full evaluation of your symptoms, imaging (MRIs, etc.), and a neuromuscular specialist for EMG/nerve conduction studies. Neurologists are limited in treatment options other than medications and they test a lot but don’t really help patients much (my experience).

Small fiber neuropathy (diagnosed by neurologists with skin punch biopsies) affects skin sensations, temperature, autonomic nervous system, etc. that can cause burning/pins and needles and numbness but it sounds like you may have compressed spinal cord/nerve roots that needs to be decompressed through surgery. Laminectomy makes space for spinal cord and nerve roots by cutting away lamina bone if done where it is needed but it doesn’t provide stability of the spine. If you have movement of vertebrae due to degeneration of discs and bone spurs/osteophytes/laminectomy, it can irritate nerves/spinal cord and cause symptoms.

When was the last time you had MRIs of cervical and lumbar spine and EMG/nerve conduction studies of upper and lower limbs? You may benefit from getting other opinions because it seems you are being dismissed/ignored in your suffering. Do you go to appointments with someone so they can help you advocate for yourself and ask questions/write down notes?