Trying to build belief.

[RedBear]

Hi everyone,

I thought I would introduce myself, share a bit of my story, and ask for some input from longstanding members who are over TMS.

I’m in my mid-40s and Australian, and I’ve spent the past few years trying to determine whether TMS explains my symptoms. I have structural issues in my hip and neck, and surgery has been suggested for my hip and is being considered for my neck. My nervous system also seems highly reactive, which has made rehabilitation difficult.

I have MdDS, which I believe is neuroplastic, although neuroplastic treatments have helped less than vestibular exercises. I also have several gastrointestinal (not IBS) and reflux-related issues, but my main concern is my legs.

About three years ago, tingling began in my toes and gradually spread up both legs. I now have constant tingling, twitching, numbness with compression, sensitivity to clothing and footwear, and itchiness. My sciatic and femoral nerves also seem irritated, with positive neural tension tests, although spinal compression has been ruled out. My left leg is worse, and symptoms are aggravated by squatting, bending, standing on one leg, walking and standing. Sitting also causes pain in my buttock.

The gradual, length-dependent progression makes me worry about small-fibre neuropathy rather than TMS. A 10-day course of steroids temporarily resolved the symptoms when they were limited to my feet, but they returned after I stopped taking them. Neurologists and rheumatologists have suggested SFN, but I still have no definitive diagnosis as there is no test for this in Australia.

For the past year, I’ve worked with a coach using PRT, IFS and EAET. Some sessions briefly reduced my MdDS-related swaying, but none of my other symptoms improved.

My biggest difficulty is that my symptoms are constant and don’t move around or change in the way many TMS symptoms seem to. Their progression and apparent mechanical aggravation make it hard to stop worrying that an underlying physical problem has been missed.

I can see why TMS might be part of the picture, particularly given how many different systems are affected. But I still struggle to believe it explains my leg symptoms, especially given their persistent nature, gradual progression and lack of response to the work I’ve done so far.

Has anyone experienced persistent, widespread nerve-type symptoms that gradually spread and struggled to accept a TMS explanation? If you eventually improved, what helped you move forward despite ongoing doubts?

I am currently on Day 1 of the structured program and am looking forward to delving in, but belief is my biggest obstacle right now.

Thanks for reading.

 

[Adam Coloretti (coach)]

Hi! Always nice to see this work reach another fellow Australian

My nervous system also seems highly reactive, which has made rehabilitation difficult.

I have MdDS, which I believe is neuroplastic, although neuroplastic treatments have helped less than vestibular exercises. I also have several gastrointestinal (not IBS) and reflux-related issues, but my main concern is my legs.

Good initial evidence (highly reactive nervous system + multiple symptoms impacting different areas and systems of the body). MdDS is usually neuroplastic according to Dr Schubiner.

My sciatic and femoral nerves also seem irritated, with positive neural tension tests, although spinal compression has been ruled out.

I'm not a neurologist, but a clinical test like this to me could very well produce symptoms based on your anticipation and expectation. In the absence of nerve damage (whether that be determined through other neurological assessments measuring weakness, reflexes etc. or an EMG), I think TMS is a big chance.

Neurologists and rheumatologists have suggested SFN, but I still have no definitive diagnosis as there is no test for this in Australia.

Again, in the absence of nerve damage SFN is very often TMS.

For the past year, I’ve worked with a coach using PRT, IFS and EAET. Some sessions briefly reduced my MdDS-related swaying, but none of my other symptoms improved.

Did any of these (probably most likely within PRT) actually focus on building your belief and gathering evidence to confirm the diagnosis? If not, I think that's the logical next step (as you seem to appreciate with this post) - I'd start with Dr Schubiner's FIT criteria

My biggest difficulty is that my symptoms are constant and don’t move around or change in the way many TMS symptoms seem to. Their progression and apparent mechanical aggravation make it hard to stop worrying that an underlying physical problem has been missed.

I understand this, but my symptoms (albeit different) were essentially 24/7 and were in the exact location of my hamstring/groin injury, they never moved (it was also my only symptom, which made belief a challenge in a different way). So whilst these are often good signs of TMS, their absence by no means rules it out.