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i’m trying this again as I didn’t really get a response last time. I have listed my symptoms below. I have no family history of CMT and I have a huge family, but I’m wondering if any of these symptoms or progression seem similar to what you guys have been dealing with?

Thank you in advance,

Age/Sex: 35M
Timeline: Symptoms started in January 2026 and have slowly progressed.

Symptoms:
Hand & Arm Symptoms
• Bilateral hand numbness (started in pinkies, left worse than right)
• Progressive numbness spreading across fingers and into the whole hand
• Hand weakness (grip strength, finger extension, finger flexion, wrist extension)
• Difficulty with fine motor tasks (tying shoes, typing, squeezing a lime, pushing soap dispensers, opening jars)
• Dropping objects
• Hands feeling cold
• Pressure sensation (“like a rubber band around the hand”)
• Pain in the right palm (after straining to open a jar)
• Difficulty straightening the pinky
• Episodes of near-complete left-hand numbness
• Wrist weakness (difficulty lifting the wrist above neutral)
• Collarbone numbness
• Armpit numbness
• Shoulder heaviness and tightness (especially right side)

Face, Head & Cranial Symptoms
• Right-sided scalp and forehead numbness
• Facial numbness (right side)
• Past episode of upper lip-to-nose numbness (resolved after weeks)
• Slight difficulty swallowing on rare occasions
• Blurry vision / trouble focusing
• Occasional dizziness and balance issues with fast head movements

Lower Extremity Symptoms
• Right big toe numbness
• Left heel (plantar) numbness
• Occasional tingling in the feet

Other / Early Symptoms
• Audible clicking in the neck when turning the head
• Tightness and discomfort in the upper back and neck (around the time symptoms started)
• Vibrating sensation along the ulnar nerve area when lying down at night

Test results:
• EMG/NCS (April 2026): Slowed conduction velocities and conduction block in multiple nerves of the arms and legs. Both sensory and motor nerves involved.
• MRI Brain: Normal
• MRI Cervical spine: Mild left C6-7 disc finding (doctors said it does not explain the bilateral symptoms)
• Bloodwork (mostly normal):
• Lyme: negative
• ANA, SSA/SSB, ANCA, Rheumatoid factor: negative
• ESR, CRP, CK: normal
• GM1 antibodies (IgG and IgM): negative
• Vitamin B6, CBC, BNP: normal
• Hepatitis C, syphilis, serum ACE, urine protein: normal
• Polyclonal immunoglobulins present (no monoclonal protein)

• Genetic testing scheduled for September
Looking for anyone who has had a similar progressive pattern with these types of nerve study findings.
Any experiences or thoughts are appreciated. Thank you.

Thank you in advance,

Age/Sex: 35M
Timeline: Symptoms started in January 2026 and have slowly progressed.

Symptoms:
Hand & Arm Symptoms
• Bilateral hand numbness (started in pinkies, left worse than right)
• Progressive numbness spreading across fingers and into the whole hand
• Hand weakness (grip strength, finger extension, finger flexion, wrist extension)
• Difficulty with fine motor tasks (tying shoes, typing, squeezing a lime, pushing soap dispensers, opening jars)
• Dropping objects
• Hands feeling cold
• Pressure sensation (“like a rubber band around the hand”)
• Pain in the right palm (after straining to open a jar)
• Difficulty straightening the pinky
• Episodes of near-complete left-hand numbness
• Wrist weakness (difficulty lifting the wrist above neutral)
• Collarbone numbness
• Armpit numbness
• Shoulder heaviness and tightness (especially right side)

Face, Head & Cranial Symptoms
• Right-sided scalp and forehead numbness
• Facial numbness (right side)
• Past episode of upper lip-to-nose numbness (resolved after weeks)
• Slight difficulty swallowing
• Raspy voice
• Blurry vision / trouble focusing
• Left eye feeling “off,” heavy, or hard to focus
• Occasional dizziness and balance issues with fast head movements

Lower Extremity Symptoms
• Right big toe numbness
• Left heel (plantar) numbness
• Occasional tingling in the feet

Other / Early Symptoms
• Audible clicking in the neck when turning the head
• Tightness and discomfort in the upper back and neck (around the time symptoms started)
• Vibrating sensation along the ulnar nerve area when lying down at night

Test results:
• EMG/NCS (April 2026): Slowed conduction velocities and conduction block in multiple nerves of the arms and legs. Both sensory and motor nerves involved.
• MRI Brain: Normal
• MRI Cervical spine: Mild left C6-7 disc finding (doctors said it does not explain the bilateral symptoms)
• Bloodwork (mostly normal):
• Lyme: negative
• ANA, SSA/SSB, ANCA, Rheumatoid factor: negative
• ESR, CRP, CK: normal
• GM1 antibodies (IgG and IgM): negative
• Vitamin B6, CBC, BNP: normal
• Hepatitis C, syphilis, serum ACE, urine protein: normal
• Polyclonal immunoglobulins present (no monoclonal protein)

• Genetic testing scheduled for September
Looking for anyone who has had a similar progressive pattern with these types of nerve study findings.
Any experiences or thoughts are appreciated. Thank you.

Thank you in advance,

Age/Sex: 35M
Timeline: Symptoms started in January 2026 and have slowly progressed.

Symptoms:
Hand & Arm Symptoms
• Bilateral hand numbness (started in pinkies, left worse than right)
• Progressive numbness spreading across fingers and into the whole hand
• Hand weakness (grip strength, finger extension, finger flexion, wrist extension)
• Difficulty with fine motor tasks (tying shoes, typing, squeezing a lime, pushing soap dispensers, opening jars)
• Dropping objects
• Hands feeling cold
• Pressure sensation (“like a rubber band around the hand”)
• Pain in the right palm (after straining to open a jar)
• Difficulty straightening the pinky
• Episodes of near-complete left-hand numbness
• Wrist weakness (difficulty lifting the wrist above neutral)
• Collarbone numbness
• Armpit numbness
• Shoulder heaviness and tightness (especially right side)

Face, Head & Cranial Symptoms
• Right-sided scalp and forehead numbness
• Facial numbness (right side)
• Past episode of upper lip-to-nose numbness (resolved after weeks)
• Slight difficulty swallowing
• Raspy voice
• Blurry vision / trouble focusing
• Left eye feeling “off,” heavy, or hard to focus
• Occasional dizziness and balance issues with fast head movements

Lower Extremity Symptoms
• Right big toe numbness
• Left heel (plantar) numbness
• Occasional tingling in the feet

Other / Early Symptoms
• Audible clicking in the neck when turning the head
• Tightness and discomfort in the upper back and neck (around the time symptoms started)
• Vibrating sensation along the ulnar nerve area when lying down at night

Test results:
• EMG/NCS (April 2026): Slowed conduction velocities and conduction block in multiple nerves of the arms and legs. Both sensory and motor nerves involved.
• MRI Brain: Normal
• MRI Cervical spine: Mild left C6-7 disc finding (doctors said it does not explain the bilateral symptoms)
• Bloodwork (mostly normal):
• Lyme: negative
• ANA, SSA/SSB, ANCA, Rheumatoid factor: negative
• ESR, CRP, CK: normal
• GM1 antibodies (IgG and IgM): negative
• Vitamin B6, CBC, BNP: normal
• Hepatitis C, syphilis, serum ACE, urine protein: normal
• Polyclonal immunoglobulins present (no monoclonal protein)

• Genetic testing scheduled for September
Looking for anyone who has had a similar progressive pattern with these types of nerve study findings.
Any experiences or thoughts are appreciated. Thank you.

Hi everyone,
I’m 34, live in Southern California, and trying to figure out if my timeline fits Lyme or something else. I’d really appreciate any similar experiences.
Possible exposure:
Hiked at Crystal Cove State Park on December 2, 2025.
Early symptoms (December 2025):
• Within a couple weeks I had flu-like symptoms that lasted about 2 weeks
• Night sweats toward the end of December
• Stiff neck, upper back pain, and an audible clicking in my neck that started around the same time
Neurological symptoms started early January 2026:
• January 4: First noticed numbness in both pinkies
• Slowly progressed over the next few months to involve more of both hands (left worse than right), with weakness, cold feeling, and difficulty with grip/fine motor tasks
• Later developed right shoulder heaviness and mild scapular winging (especially after overhead activity)
• Scalp and right forehead numbness
• Raspy voice and difficulty swallowing water at times
• Occasional numbness/tingling in a toe
• More recently: intermittent dizziness with fast head movements, slight balance issues, and episodes of blurry vision
Workup so far:
• EMG (April 2026): Diffuse peripheral neuropathy with slowed conduction velocities and conduction block in multiple nerves (sensory + motor). Suggested possible HNPP or CMT variant. No active denervation.
• Brain MRI (MS protocol): Normal – no demyelinating lesions
• Cervical MRI: Mild C6-C7 disc protrusion with mild left foraminal stenosis, no cord signal abnormality
• Extensive autoimmune panel (ANA, Sjögren’s, RF, ANCA, GM1, etc.): Negative
• Inflammatory markers, B12, folate, TSH, etc.: Unremarkable

I’m currently on disability leave. My doctor just ordered Lyme testing. Genetic testing for HNPP/CMT is scheduled for September.
Has anyone had a similar progression — flu-like illness + night sweats + neck symptoms shortly after a possible exposure, followed by slowly progressive bilateral hand numbness/weakness and other neurological symptoms over 6–7 months?

Any experiences with treatment outcomes when neurological symptoms had already been present for several months would also be really helpful.
Thank you.

i’m hoping this finds somebody with similar symptoms because I’m feeling pretty alone at the moment

Over the past six months, my hands have slowly and progressively gotten weaker and more numb. My left is completely numb up to my wrist and my right pinky side is numb and my wrist drops. I’ve also felt short instances of numbness in a foot heel, upper lip, armpit, collarbone area.

I’ve had MRIs of my brain and the doctors did not find anything. They also had an MRI of my spine and they explained that my symptoms don’t match what they found. I had EMG test, but they could not make a clear diagnosis but leaned towards HNPP or CMT.

Nobody in my family has had anything like this in their history so I’m not too sure if it’s hereditary.

has anybody dealt with their hands going completely numb for months at a time?

Any insights would be appreciated, thank you.

Tests so far:
• MRI showed mild disc protrusion at C6-C7 on the left with contact on the C7/C8 nerve roots.
• EMG showed demyelinating features (slowing conduction block)

gene testing in september

Hey everyone,
I’m 34 and trying to figure out if my symptoms sound more like CMT or HNPP or something else. I’d really appreciate any insight from people who’ve been through something similar.
Symptoms / Timeline:
• Started in February 2026 (about 5 months ago) with bilateral pinky numbness.
• Slowly progressed to the ring and middle fingers, and now both hands are significantly affected.
• Currently: My left hand is almost completely numb, and my right pinky and ring finger are also mostly numb.
• Progressive weakness — grip strength is noticeably weak, and my right wrist drops when I try to extend my fingers.
• I also get numbness in the collarbone and armpit area that comes and goes.
• Around the same time symptoms started, I developed tightness in my upper back and an audible clicking when turning my head.
Tests so far:
• MRI showed mild disc protrusion at C6-C7 on the left with contact on the C7/C8 nerve roots.
• EMG showed demyelinating features (slowing + conduction block).
• Vascular studies were normal.
• Genetic testing and repeat EMG are still pending.
Family history: My mom and brother have both had episodes of transient numbness in the past.
My symptoms have been slowly progressive rather than sudden dramatic flares. I’m trying to figure out if this sounds more like HNPP or a form of CMT.
Has anyone experienced something similar (slowly marching numbness + weakness in the hands without major leg involvement)? Any thoughts on whether this leans more toward CMT or HNPP would be really helpful.
Thanks in advance.

Any advice helps, thank you.

Long story shorts both of my pinkies started feeling numb back in February. Four months later, half of both hands (pinky side) are numb and I’m feeling a lot of weakness in my grip.

it took me about two months after the initial symptoms to actually get into EMG study and they suspect NHPP. still waiting for a neurology consult that I have next month. I actually don’t really know what’s being irritated so I’m kind of just winging it.

Any advice you wish somebody told you when you first started off with this? thanks