Hi all.
OP here. Checking back in to say I am 100% with no symptoms.
My biggest bit of advice is surrender to the symptoms, stop chasing diagnosis and accept it. Expose yourself to normality - back with friends, public, people, hobbies, etc. Stop seeking reassurance. It might not be this year, it might not be next year, you will have bad days, you will have VERY BAD days.. but it will pass. If it passed for me, it will pass for you. I spent so much money at so many health professionals because I refused my believe my mind could conjure all these physical symptoms.
What a tough time in my life this was. And there have been other tough times since (unrelated) which have caused me to completely forget about this saga. We're always going to be faced with battles in life and we can't drop everything and wallow in depression, we have to keep pushing. No one gets through to the end of life without a few chinks in the armor.
My DMs are open if you want to talk.
Thanks
’m hoping you might be able to give me some guidance on a problem I’ve been dealing with for around four years.
I have spent a considerable amount of money investigating my symptoms from neurological, rheumatological, immune/mast-cell, nutritional, gut and environmental/mold perspectives, but I still don’t have a satisfying explanation for the overall pattern.
I have become increasingly interested in the TMS/neuroplastic model because of how strongly my symptoms fluctuate with my nervous-system state.
My main symptoms are:
- Hands becoming purple, blue/mottled and cold, particularly when hanging down or when I’m under pressure.
- At other times, the same hands become very red, hot and flushed.
- Occasional pooling/swelling in my hands.
- Sometimes my hands look completely normal.
- Burning, tingling and buzzing sensations in my hands and feet.
- Tingling/electrical sensations that can move through my legs, arms, back and body.
- Facial/neck flushing and rosacea-type redness.
- Redness that can also appear across my stomach/body.
- Temperature sensitivity and cold sensations.
- Trembling/internal vibrations.
- Tinnitus and brain fog.
- Episodes of a sudden “rush” through my body, followed by increased redness and vascular symptoms.
I’ve wondered whether these could represent
erythromelalgia, Raynaud’s, acrocyanosis, small-fiber neuropathy, POTS/autonomic dysfunction or MCAS.
What keeps making me question those explanations is how dramatically the symptoms change.
For example, my hands can be purple and cold, then become red and hot after warming up, eating, exercising or during an adrenaline-type episode, and later return much closer to normal.
Stress and attention also seem to influence things. Work pressure, worrying about my health, legal/financial stress, monitoring my hands, caffeine and vaping can all amplify the symptoms. However, I don’t consciously create the symptoms — the physical vascular changes happen automatically.
My investigations
I’ve had:
- Normal MRI of my brain and spine.
- Normal EMG/NCS.
- Negative ANA.
- Very low ESR/CRP.
- Normal C3/C4.
- Negative cold agglutinins.
- Normal baseline tryptase.
- Thyroid, ferritin, vitamin D, magnesium and other routine blood tests generally reassuring.
- B12 has varied, including a result of 631.
- Previously elevated homocysteine (~33), which fell to ~6 after B12/folate/TMG supplementation.
- MMA 1.6 with a laboratory reference range below 2.3.
I’ve also investigated gut health and mold/environmental exposure extensively.
There were previous mold issues in my home, but the house was subsequently remediated/ventilated and several inspections did not identify significant ongoing visible mold. My symptoms have also persisted in different environments.
Why I’m contacting you
I have a history of significant prolonged stress and hypervigilance, including the death of my son in 2022 and other major life pressures. I’ve also always tended toward perfectionism, high achievement, working long hours and staying in a high-alert state.
Since developing these symptoms, I’ve become extremely focused on trying to work out what disease is causing them. I’ve spent a lot of money testing, researching and checking because I’m frightened that I’m missing something.
I’m now wondering whether this has potentially become a
self-reinforcing nervous-system/neuroplastic loop:
threat/activation → autonomic activation → vascular/sensory symptoms → fear and monitoring → further activation.
I understand that TMS is not simply “imagining symptoms.” What interests me is whether the brain and autonomic nervous system can produce genuine physiological changes in blood flow, temperature regulation, sensory processing and autonomic function.
My main question
Given this history, do you think my overall pattern could plausibly be driven or maintained by a sensitized nervous system/TMS mechanism?
In particular, have you worked with people who had
visible physical symptoms such as red/purple hands, Raynaud’s-like changes, erythromelalgia-like flushing, blood pooling, temperature dysregulation, neuropathy-like tingling or POTS/autonomic-type symptoms, and who subsequently recovered through a mind-body/neuroplastic approach?
I’m not looking for reassurance simply because I want to hear that it’s TMS.
After four years, I’m exhausted from constantly searching for another explanation. I want to know whether it is reasonable to stop treating every change in my hands or every new sensation as evidence of another disease and instead seriously commit to retraining my nervous system.
My goal is to get completely back to normal — to exercise, eat normally, work, be present with my children and eventually stop thinking about my hands and my symptoms altogether.
If you think this presentation is compatible with the TMS/neuroplastic model, I would be extremely grateful for any guidance on how you would approach recovery in someone with such prominent
vascular/autonomic and neuropathy-like symptoms.
Thank you very much for taking the time to read this.
Kind regards,
Niall