Anyone else out there like me?

[Mumma02]

Back in November 2020 I became unwell with neurological symptoms which quite literally occured overnight. I woke one night with a deep ache/pins and needles in both forearms and felt very fatigued, lightheaded, spaced out/brain foggy, had horrible headaches, one occassion of electric shocks shooting down the full length of both arms which was very painful, extremely painful left wrist which matched carpal tunnel symptoms but nerve tests came back clear, the feeling of slowed reflexes in my left arm and also nausea.

I literally felt like I was dying. I had a brain MRI which was clear other than fluid on my sinuses and strangely, absolutely every symptom resolved on it's own over about 4 months.

However, from that point, I have since developed pretty much every autonomic neuropathy symptom there is and I'm suffering with terrible nausea at the moment which I fear is gastroparesis. A year ago I also developed burning feet and now have a slight tingle in my hands. All these symptoms come and go.

I have mentioned my symptoms in the past but I've done so much reading and can't find anyone else like me.

I had not had covid before all my symptoms started but they did get significantly worse during covid where I developed POTS and even worse again following the booster vaccine which resulted in full body internal tremors, temperature dysregulation, nausea, extreme fatigue - amongst other things.

Appreciate hearing any insights.

Thank you.

Have you been checked got diabetes ?

*for

Have you had a full blood count and checked for anemia / low iron?

Who have you seen? My local team are pretty bad but now under UCL, they are the best team

For reference - I do have diabetes. I have a genetic variant (MODY) which is extremely well controlled (talking "normal person blood sugars) and was caught during my first pregnancy so no chance of years of untreated symptoms.

I do have chronically low ferritin <30 and folate deficiency but pretty sure they wouldn't be the cause of all this and for the fact that I had all these unusual symptoms and they disappared all at once to begin with.

I'm not under any particulae specialist. Have made an appointment to see a functional doctor in London next week which is extremely expensive.

Have they checked your bloods for MOG-AD or aquaporin 4? The former has symptoms of what you have been experiencing.

@ThereTheyreThere no they haven't! Who would be able to test for these and what are they?

I know this sounds a bit odd but all the first symptoms you describe could be Vitamin B12 deficiency! Have you had that checked?

@BitOutOfPractice I have had the serum test and my levels have either been in the 300s or 400s.

So, you have a ferritin deficiency, a folate deficiency and B12 below 500. If your ferritin is below 30, then by the NHS's own definition you are iron deficient and your GP should be treating this and referring you as appropriate.

A sublingual B12 supplement and a good B complex with methyl folate should resolve the rest.

I am a veteran of this sort of thing. I was so unwell ten years ago that I was told I had CFS and basically that I would go through the rest of my life unable to work etc because of my overwhelming symptoms. Vitamin and mineral deficiency was at the heart of it (I had vitamin D in the mix as well) and once that was sorted I have been fine since. I had to sort this out myself basically without any help from conventional medicine, but it's not rocket science.

@TheOtherHotstepper did you suffer with any GI symptoms? Specifically nausea? That's the one debilitating me at the moment. Also - small fiber neuropathy symptoms! But I feel dizzy, lightheaded, off balance, spaced out...some times as though I am on the verge of a seizure of something! (Never had one but hard to describe the feeling).

Hi @Mumma02 Me too, to an extent. Looking like GERD and B12 deficiency. Possible gallblader as well. More tests and scans coming up. The omazaprole and gaviscon is working for the sickness.

Is this thread still alive?

You sound so similar to me!!!
Back in 2022 around May time I woke up to go to the toilet and my legs just didn't work. I fell and ended up on floor for a few hours as I literally had no feeling from the waist down. This happened two more times and eventually I couldn't really do much and needed help lifting my legs and doing basic things.
I started vomiting after every meal. I lost about 4 stone.
Docs did blood tests but all came back fine.
I already have two diagnoses that are nerve related.
I continued to battle through and my mobility got better from around Nov 2022 but I still suffer with severe breathlessness, tingling in hands and feet, internal tremors and my left foot doesn't lift very high so if walking distance I need a walking stick to help support me.
I've had nerve conduction tests which showed issues in my hands and left leg.
I've had an MRI which didn't show any spinal issues.

Doctors don't know what's wrong but just say it's a 'central nervous system' issue and I guess until it gets worse I won't know for sure.

I suspect MS but waiting for neurologist to assess the MRI.

Pretty sure I have dysautonomia to be honest, although I can't get a diagnosis for it from anyone as of course I am fit and healthy. LOL.

Frustrating thing is not knowing the cause as usually it is linked to post viral illness, connective tissue disorders, autoimmune conditions and hypermobility - none of which I have.

I also have several vitamin deficiencies in iron, Vitamin A, Vitamin E, B1, B2, B6, folate, on the lower end for B12, Magnesium and Zinc...so could also be this. No idea why they are all low either!

@Mumma02 I was wondering how you got on with the functional medicine appointment and if you'd recommend it? I'm struggling with ill health and have been for years but gp can't find anything so I'm keen to find a great functional medicine dr. Thanks