Neuropathy or neurotoxicity symptoms

Hello @burt, welcome to Connect. Thank you for sharing your symptoms. I have small fiber peripheral neuropathy in my feet but my only symptoms have been numbness. I have no medical background or training and can only share my personal experiences. It sounds like you suspect neurotoxicity may be causing your symptoms of neuropathy.

Have you been diagnosed with neuropathy?

John

No I haven't and prior to this I was in good health and active.

I have had a lot of things ruled out. I have had numerous blood/urine tests for the following:
Inflammation - neg.
Liver & kidney - normal
Heavy metals - neg.
Myasthenia Gravis - neg.
Lyme - neg.
Wes Nile - neg.
Various Parasites - neg.
Thyroid function - normal
Lupus - neg.
Thiamine B1 - normal
B6 - normal
B12 - normal
Folate - normal
Vitamin D - normal
Vitamin E - normal
Magnesium - normal
Glucose non fasting - normal

Other Tests:
Brain & spine MRI - normal
EEG - normal brain waves no seizure activity
EMG & NCV arm & leg - normal
ECG - normal heart structure function

Reflexes - all normal or slightly over active.

Cardiologist says my autonomous nervous system is not correctly regulating my heart rate or blood pressure. When I stand my heart rate increases 20-40 beats per min before settling in to a mild tachycardia of 104 - 120 bpm while standing.

My neurologist has referred me to another team.

The physicians & neurologosts have been thorough but have not found causation.

The condition seems to have settled into the following symptoms:

Numb hands and feet.
It is like wearing thin gloves & socks. I can still feel texture with my fingers just less perception of it. Sometimes during more strenuous activity my forearms and legs to feel like they are full of lead.

Balance is slightly off I have a little trouble walking on uneven ground. My gait feels impacted but I don't overtly display any ataxia and can walk tandem fine.

I get fatiqued easily and my heart rate increases moderately 140- 150 bpm with mildly strenuous activity like weed eating around the yard.

At night the bottoms of my forearms, triceps, and calves get sore. I have muscle spasms and twitches. Particularly when I am about to doze off some muscle will spasm and wake me back up.

I have insomnia unless I take medication which I never had to before this started. With the meds I sleep for 4 hours wake then sleep for 3 more hours.

The worst symptom is a constant brain fog that seems to impact my cognition and feeling of being totally present in most situations. This symptom started about a week after the peripheral symptoms.
This symptom was present before I started taking the sleeping meds as the lack of sleep was making the symptoms worse.

I guess the next step is skin biopsies to check for small fiber neuropathy.

Hi @burt, it sounds like you have been through the wringer with the tests. I know that must be frustrating having all that done and each time hoping they find the answer. Have you been tested for Postural Orthostatic Tachycardia Syndrome (POTS)? I only thought of it because of some of the symptoms you mentioned are symptoms for POTS. I've also read that POTS is often misdiagnosed.

Mayo Clinic Q and A: All about POTS — postural tachycardia syndrome
-- https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-all-about-pots-postural-tachycardia-syndrome/

What Is POTS and Why Haven't More People Heard of It?
The condition, often misdiagnosed as anxiety, can be debilitating and demoralizing.
-- https://health.usnews.com/health-news/patient-advice/articles/2016-08-01/what-is-pots-and-why-havent-more-people-heard-of-it

Do you have an appointment scheduled with the new team you were referred to by your neurologist? I hope they are able to find an answer for you soon Will you let us know what you find out?

One of the tools I use when I'm researching my health issues and I'm not able to find a lot of information is Google Scholar (https://scholar.google.com/). You can find a lot of research information and you can also sort if by date to see the latest articles.

John

Thanks John,

I do have some appointments but they are a long way off.

POTS has been mentioned as well. Nothing confirmed yet.

Hi,
I am here researching Lyme, etc. and ran across your post. I'm curious what you ever found out about your condition?

Hello @bcclifton, Welcome to Connect. I'm don't think @burt is still following Connect since their last post was in 2020. There are several other discussions on Lyme disease that you may want to view here:

-- Diagnosed with Chronic Lyme Disease: Anyone else?:
https://connect.mayoclinic.org/discussion/lyme-disease-thank-you-all/
-- Lyme Disease getting more attention with celebrity diagnoses:
https://connect.mayoclinic.org/discussion/lyme-disease-3/
-- Lyme disease and neuropathy:
https://connect.mayoclinic.org/discussion/lyme-disease-and-neuropathy/
Have you been diagnosed with Lyme disease?

Have you recently been vaccinated with one of the vaccines made for Covid? That’s when all my symptoms, including paresthesia and neuropathy started.

My neuropathy started shortly after my last Covid shot. I will not get the latest booster because I am afraid my symptoms may worsen.

Welcome @brendalouise, Have you been diagnosed with neuropathy or do you just have the symptoms after the COVID vaccine?

I have not been diagnosed by a neurologist but have seen my primary are physician and she confirmed my opinion that I had neuropathy.