25 y/o female of 2 young children here. I've been under a lot of stress this year.

Starting in January I started getting horrible tension headaches, body wide pain in almost every joint, bone and nerve. Dr said it was tmj

Went to the oral surgeon he ruled out tmj.
Went back to the doctor had xray of my spine and CT of my cervical spine and head. Both tests were normal. Dr did some blood work came back that my vitamin d was a little low 28 (range 30-100). Started vitamin d replacement in June 2018 I started feeling much better after 2 weeks on 4000 IU.

I had a few good months with only bouts of pain very minimal. Come august 2018 I had what I call another episode of pain. I admit I was under a lot of stress at the time (dr suggested fibromyalgia without any testing therefore I did not accept that diagnosis). But this episode was different.

After about a week of pain August 10 I went to see my chiropractor after my vitamin d level was drawn (45 considered normal). I had only been to the chiropractor one time. this time he did some trigger point therapy close to c1 and used a muscle stimulator on me.

During the muscle stimulation I had visceral twitches (felt like it was in my uterus) I didnt think much of it (chiropractor said it would not cause adverse symptoms not so sure now) I went home feeling unusual. Is it possible the current from the muscle stimulation irritated my nerves? No information supports this theory.

The following morning August 11 I woke up to extreme muscle twitches in my calfs bilateral. I took to the internet for answers MISTAKE.

the muscle twitches spread from my calf (had a hot spot for a while) to my arm, to my shoulder blades, chest, feet, gluteals, ribs, face, back. There aren't many places I haven't twitched! Body wide fasiculations constant too many to count.

I made an appointment with my neurologist they got me in Aug 14 2018. Neurologist concluded that I did not have weaknesses, atrophy or any other findings except bilateral hyperflexia (brisk reflexes) at the knees. She did not notice the twitches. She told me a list of things she would be looking for gave me an order for blood work, MRI, EMG.

As the days go by i either dont notice the twitches as much, or they are much less but they keep coming back.

had about 12 different blood tests (all negative) except high anion gap (22), high b vitamins thiamine, folate b12 within range but high. MRI of head and cervical spine normal. Doctor said my levels were fine I didnt agree so I stopped taking all supplements 8/20. Scheduled the EMG for September 14th. I couldn't deal with the wait so I found another neurologist that conducted the EMG and NCS on 8/22. During the time in the office I was freezing new neurologist spent over 3 1/2 hours with me he told me he would get my results in by 8/24. Got home did some research turns out cold can affect NCS I called his office he called me back saying my EMG looks normal, but my NCS is off. We rescheduled another appointment for 8/27. Went in nice and warm with a heated blanket did the test. All was normal until he got to my legs. He said my conduction speed was slow (35) in some areas mainly sensory, signifying some sort of neuropathy. Still waiting on results.


I understand that this is early it's a process of elimination. But I'm still worried about what could be causing these symptoms in my body. I'm specifically worried about amyloidosis because I have issues with my heart (congenital).
Has anyone experienced anything similar?
Thank you.

Hi Mamabear2011

Welcome to NeuroTalk .

The PN forum is very active so I am confident that other members will be able to offer you support and helpful suggestions.

"I'm specifically worried about amyloidosis because I have issues with my heart (congenital)."

I know quite a lot about amyloidosis from a basic science rather than clinical perspective so might be able to help you with this.

Thank you for the reply. What is the best test for amyloidosis?

Amyloid is a misfolded form of a protein. Most proteins can form amyloid under the right conditions.

The diseases linked to amyloid are the amyloidoses. They can be specific (eg, production of Abeta in the brains of people with Alzheimer's Disease) or systemic (the amyloid is from a blood protein and so can affect different tissues).

Some dyes like Congo Red and Thioflavin T change their optical properties when they bind to amyloid; amyloid levels can be measured from this.

This is usually followed up with specific clinical investigations relevant to a given amyloidosis.