Hiya. Clear MRI but chronic pain and symptoms persist

[Beck71]

Has anyone had gait, muscle spasms and weakness (leg/knee collapsing) but no lesions on MRI scan? I’ve been IM injecting daily for 3 months

[DRunnerchick]

So sorry you’re going through this. Have you been tested for PA prior to starting injections? Seen a neurologist?

D🏃🏽‍♀️

[Nackapan]

Glad your MR I is clearWhat was your IFA test resukt?

You've reminded me before I got ill I went fir a knee xrsy as knees kept giving way.

Especially on hoping upstairs.

I assumed a work related thing.

Nothing found apart from

'Normal l wear and tear

It resolved.

Gait weakness I get.

Standing on the spot s problem.

Takes alot of concentration walking straight at times. Have to consciously stay upright and not stoop.

To try snd control a 'stagger walk.

Happens if walk more than 1/2 mile abd if there is an incline whatever then distance.

Spasms were early on and mainly in bed.

This has resoved.

Did you get to see a neurologist?

[pitney]

Yes, I have very similar symptoms to Nackapan but they did improve when I started to SI every month

[Bellabab]

Such problems are most likely to be due to neurological damage. SI every other day sorts it yet it may well take many, many months.

[thinkin]

Hi,

It sounds like you possibly could have some functional neurological symptoms. They are common, and effect women more than men, especially if B12 is low. See if you can get to see a specialist neurologist from the FND Hope website, but you will have to go through your GP. It may be also if you've had COVID > it is causing neurological problems in some people. Don't try to push through it, if it is functional you may make yourself worse. Concentrating on how you move will make it worse because the part of the brain that is affected is the part where your conscious decisions about movement interface with all the stuff you don't think about. These symptoms can settle on their own.

My FND is linked to B12 insufficiency and asthma > sulphite oxidase insufficiency (this is all asthmatics) > increases histamine through degranulation of mast cells. Histamine is also a neurotransmitter that regulates others. B12 helps reduce histamine in cells, but you need diamine oxidase to reduce histamine outside cells. You can buy DAO as a supplement, but it's not cheap. You can sprout peas in the dark to get a cheaper supply. It's only worth it if you eat a low histamine diet and if you have asthma low sulphite diet too. That's a lot of google scholar and playing around. Antihistamines don't work effectively as you can't avoid either sulphites or histamine in food altogether.

If you are not absorbing B12 then you may not be absorbing other vitamins that help your brain work properly. Vitamin D acts as a mast cell stabiliser amongst other things. I have problems absorbing vitamins and I personally found the "bioactive" forms are far more effective. B6 as P5P, B1 as allithiamine are two that I'm on.

I appreciate that diet is highly individualised. If you have other conditions then perhaps it may be a good idea to see how this affects you nutritionally. Good self care is important too. Boring, not sexy and doesn't work immediately. Dietary changes can show results in days.

A sign it may be linked to histamine are itching, rashes, eczema, psoriasis, allergies/ hay fever, gut problems, you may not be great with alcohol, when you are worse you may be grumpy or depressed - personally I'm absolute monster. Also symptoms worsen when you have an infection, are stressed or anything that is provoking your immune system.

Don't let anyone tell you there's nothing wrong with you or that it's all in your head. Symptoms are coming from your brain/ central nervous system, but they could be being provoked by your immune system.

Just a thought. It's not harmful to try, though the diet is restrictive, it won't be forever. You will have a long wait for a neurologist, so this is something you could try in the mean time.

Hope things start to settle soon. xx

[deniseinmilden in reply to thinkin]

Very interesting additional insight, thank you!

[deniseinmilden]

Had all those things and many more. I'm mostly fine from that point of view now. I didn't have an MRI of my spine but am sure it would have been OK.

For me it was just daily SI, backed up by lots of supporting supplements, for long enough, to allow my body to recover.

You will probably benefit from a broad spectrum multivitamin and mineral supplement (supermarket A-Z ones are as good as, if not better than, more expensive branded ones) plus extra folate, potassium, magnesium, iron and Vitamin D3 (plus K2 if you aren't on anticoagulants). Ideally you will be able to get these from your diet but as you are daily SI it will be even more important to get your blood tested to find out your levels, in case you need additional supplements. Because your levels fluctuate with intake (food) and exercise you will ideally get your tests done when your symptoms are worse but I appreciate this is easier said than done.

Most people are fine with folic acid as their folate supplement but some of us with joint problems need methylfolate. Go easy with introducing it though as it can cause a headache from hell if you don't need it or overdo it. A few need folinic acid instead.

You need potassium and magnesium for nerve transmission and muscle function so low levels of these could be causing your problems - but be careful as you can have too much of these too: be guided by your blood test results.

All vitamins and minerals are interdependent and so it is essential to get the right balance of everything for optimum function, and even more so healing.

3 months is very, very early days - about the point where your nerves and system are "waking up" and becoming painful where they weren't before, just because the nerves weren't working at all.

Neuropathy is horribly painful but with enough B12 and supporting supplements it will improve but nerves usually take about 18 months to heal (6 months under optimum conditions but anything that slows this up makes it take longer).

It took me about 4 years of daily SI and plenty of supporting supplements before I couldn't get any further improvement to my nerves (because they were really good again) and, because I have absorption issues, it was/is easy to get short of something and trigger a flare of the problems - but after a while it was so good to know I could get over it again!

Good luck and please ask more questions as they arise.