Rapid onset of PN?

Posted by jan64 @jan64, Sep 5 9:02am

I was diagnosed with mild carpal tunnel syndrome in late May, but it turned into constant tingling and numbness just weeks later. Another hand surgeon suggested an EMG of upper extremities which showed C5 to c7 abnormal; however, other doctors (3) discounted this doctor's report of Cervical radiculopathy based on his poor reputation. It spread to pain up to elbows. Then by July, I had pain in my feet which I thought was plantar fasciitis, but two weeks later I developed burning and numbness in feet and lower legs. I felt my left foot was much weaker and was advised to go to Emergency room. MRI and CT scan were okay. Then nerve pain in my back. All of this took about 10 weeks.
It has been difficult to get necessary tests and neurology appointments, but I am finally on 1800 mg of gabapentin and low dose of amitriptyline at night. still awaiting results from rheumatology (due for that return visit in November). I am experiencing weakness in my left leg.
Lower EMG was normal. Referral to get a nerve biopsy; however, very
few doctors are doing this. I was actually told that the doctors here have to decide to take me as a patient? Is that typical? Where can I go to get this done? Very little guidance from my PCP or neurologist (30 minute visit that I drove 3 hours to get to).

Interested in more discussions like this? Go to the Neuropathy Support Group.

Hello @jan64, Welcome to Connect. I think there a lot of different possible causes for a sudden onset of peripheral neuropathy. I know it's the pits after you have seen multiple doctors/hand surgeons but still don't have any answers. The Foundation for Peripheral Neuropathy has a list of common causes that you might want to scan through - https://www.foundationforpn.org/causes/.

Have you thought about seeking help at a teaching hospital or major health facility like Mayo Clinic?

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@johnbishop

Hello @jan64, Welcome to Connect. I think there a lot of different possible causes for a sudden onset of peripheral neuropathy. I know it's the pits after you have seen multiple doctors/hand surgeons but still don't have any answers. The Foundation for Peripheral Neuropathy has a list of common causes that you might want to scan through - https://www.foundationforpn.org/causes/.

Have you thought about seeking help at a teaching hospital or major health facility like Mayo Clinic?

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I am 64 years old with an insurance plan that limits me to where I can go. I will be on a different plan with Medicare in March (a plan that allows me to go wherever medicare is accepted). I live in a rural area, just outside of Altoona, Pennsylvania. Any suggestions are appreciated.

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@jan64

I am 64 years old with an insurance plan that limits me to where I can go. I will be on a different plan with Medicare in March (a plan that allows me to go wherever medicare is accepted). I live in a rural area, just outside of Altoona, Pennsylvania. Any suggestions are appreciated.

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This site lists all of the teaching hospitals in Pennsylvania - https://www.healthguideusa.org/teaching_hospitals_pennsylvania.htm and might have one in your area.

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@jan64
It sounds like you have compression of spinal cord/nerve roots. Did you fall recently? Did anything happen prior to your symptoms starting?

I am 55, female, and it took me over 5 years for diagnosis of cervical spondylitic myelopathy which is spinal cord compression injury. This can cause permanent damage to your spinal cord so my 3rd surgeon finally properly
Diagnosed me and I had ACDF surgery on C5-C6. Myelopathy can affect arms/hands/legs/feet/bladder, etc.

It would be good to get 2nd and 3rd opinions and get MRIs of your cervical and lumbar spine asap. You should get a copy of your medical records and read through everything. I had multiple doctors miss or dismiss things that were important. EMGs may or may not show radiculopathy or carpal tunnel but the compression may be in your spine. You may need to see an orthopedic spine specialist or neurosurgeon. Neurologists can test and test but you may not get answers/treatment from them. It could be a structural issue in your spine causing your neurological symptoms which is what causes mine. I have a congenitally narrow spinal canal.

Good luck getting answers and proper diagnosis/treatment. Keep advocating for yourself and your quality of life/health. Don’t give up!

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@dlydailyhope

@jan64
It sounds like you have compression of spinal cord/nerve roots. Did you fall recently? Did anything happen prior to your symptoms starting?

I am 55, female, and it took me over 5 years for diagnosis of cervical spondylitic myelopathy which is spinal cord compression injury. This can cause permanent damage to your spinal cord so my 3rd surgeon finally properly
Diagnosed me and I had ACDF surgery on C5-C6. Myelopathy can affect arms/hands/legs/feet/bladder, etc.

It would be good to get 2nd and 3rd opinions and get MRIs of your cervical and lumbar spine asap. You should get a copy of your medical records and read through everything. I had multiple doctors miss or dismiss things that were important. EMGs may or may not show radiculopathy or carpal tunnel but the compression may be in your spine. You may need to see an orthopedic spine specialist or neurosurgeon. Neurologists can test and test but you may not get answers/treatment from them. It could be a structural issue in your spine causing your neurological symptoms which is what causes mine. I have a congenitally narrow spinal canal.

Good luck getting answers and proper diagnosis/treatment. Keep advocating for yourself and your quality of life/health. Don’t give up!

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Yes, my EMG said cervical radiculopathy, but the neurosurgeon's PA said they did not give credence to this doctor's report. The problems with my c5 to c7 were not severe enough for surgery. I had been involved in a minor car accident in January and had mild back pain for about five days. It resolved. I had full spine MRI at the hospital at the end of July when I was admitted after visiting the ER with severe pain/numbness/burning in feet and legs. My hands were already affected by June 3 and getting worse. I am still seeking answers. I don't know what to do next, but a second opinion with a neurosurgeon sounds like a good idea. Thank you.

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Have you had a 2 hour glucose tolerance test? The majority of idiopathic symmetrical (roughly symmetrical) cases of idiopathic polyneuropathy are eventually linked to glucose/ insulin issues.

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@proteusx

Have you had a 2 hour glucose tolerance test? The majority of idiopathic symmetrical (roughly symmetrical) cases of idiopathic polyneuropathy are eventually linked to glucose/ insulin issues.

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I’m interested in your comment regarding impaired glucose /insulin being the majority reason of idiopathic neuropathy. Can you cite where you obtained this information? Thanks!
Steve

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Many researchers make reference to this; it makes perfect sense since diabetes affects so many people and up to 50% of them have or will eventually have peripheral neuropathy, to one extent or another. The problem with diabetes and pre-diabetes is that they often go undiagnosed for a long time, during which period peripheral neuropathy is sometimes the first symptom. Over-reliance on HbA1c and random serum glucose testing adds to the problem, as these often miss hyperglycemic states that may already be in the frank diabetic range. (This was true in my own case; when I was finally fed up with the "idiopathic" non-diagnosis, I insisted on a two hour glucose tolerance test and to the shock of my doctor, but not myself, I was revealed to be severely hyperglycemic, while concurrent HbA1c and random serum glucose results said all was well.) You can research this for yourself. Here's an excerpt from a German paper (there are many others):

Review Handb Clin Neurol
. 2014:126:3-22. doi: 10.1016/B978-0-444-53480-4.00001-1.
Epidemiology of polyneuropathy in diabetes and prediabetes

Dan Ziegler 1 , Nikolaos Papanas 2 , Aaron I Vinik 3 , Jonathan E Shaw 4
Affiliations expand
PMID: 25410210 DOI: 10.1016/B978-0-444-53480-4.00001-1
Abstract

Diabetic distal symmetric sensorimotor polyneuropathy (DSPN) represents a major health problem, associated with excruciating neuropathic pain, increased morbidity and impaired quality of life. The understanding of its epidemiology is difficult due to methodological issues. Inconsistency in the selection of diagnostic procedures renders comparison between studies problematic. Further problems arise from selection bias due to the inclusion of hospital-based populations. DSPN affects approximately 30% of hospital-based populations, 20% of community-based samples, and 10% of the diabetic population identified by screening. Chronic painful DSPN is present in 13-26% of diabetic patients. Between 25% and 62% of patients with idiopathic peripheral neuropathy have prediabetes. Among pre-diabetic subjects, 11-25% exhibit peripheral neuropathy and 13-26% neuropathic pain. Evidence from population-based studies indicates that there is a gradient in the prevalence of neuropathy. Indeed, the highest frequency is found in patients with manifest diabetes mellitus, followed by individuals with impaired glucose tolerance, then impaired fasting glucose and, finally, those with normoglycemia. The most important etiologic factors are poor glycemic control, age, diabetes duration, visceral obesity, height, hypertension, age, smoking, hypoinsulinemia, and dyslipidemia. Clinic-based data suggest that DSPN is associated with increased mortality in diabetes, but confirmatory prospective population-based studies are required.

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Here's another more recent (2023) paper commenting on this. Until proper testing is done a large number of pre-diabetics and diabetics with PN are considered "idiopathic":

Raffaele Galiero 1 , Alfredo Caturano 1 , Erica Vetrano 1 , Domenico Beccia 1 , Chiara Brin 1 , Maria Alfano 1 , Jessica Di Salvo 1 , Raffaella Epifani 1 , Alessia Piacevole 1 , Giuseppina Tagliaferri 1 , Maria Rocco 1 , Ilaria Iadicicco 1 , Giovanni Docimo 1 , Luca Rinaldi 1 , Celestino Sardu 1 , Teresa Salvatore 2 , Raffaele Marfella 1 , Ferdinando Carlo Sasso 1

PMID: 36834971 PMCID: PMC9967934 DOI: 10.3390/ijms24043554
Abstract

Diabetic neuropathy (DN) is one of the main microvascular complications of both type 1 and type 2 diabetes mellitus. Sometimes, this could already be present at the time of diagnosis for type 2 diabetes mellitus (T2DM)

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