Beginning to investigate my diagnosis

[M3rry]

Hi everyone.

A few years ago I started getting odd numbness... got the GP to send me to a neurologist... did scans, gave history (childhood in the 70's and 80's in the med)... told 'nothing' was wrong (rheumatologist said it might be more Fibromyalgia) but come back when permanent. (Did include MS negative.)

So a few months ago I saw a new neurologist who said FND and besides giving me Neurosymptoms.org to read and show my GP he practically kicked me out of the room. No treatment plan, no advice and signed off. I go and see the GP who first reads my MRI report - neck stenosis - then states she's never heard of FND.

I am waiting for an assessment for stenosis.

I have read a few people's descriptions and I am not sure my symptoms match, here is what I cannot attribute to other things I live with (which include bile salt malabsorbtion, B12 deficiency, diagnosed with 2 sleep disorders, Fibromyalgia and hayfever/asthma among others):

Numb patches - specific bits of my feet are permanently numb, new patches are forming on my feet and legs, the numb patches on my hands has not become permanent.

LACK of pain - I had a broken tooth with an abscess - IT DID NOT HURT (thank all that is good for a great dentist!)

I sit on my legs (I know bad habit) - I no longer get painful pins and needles - I do still get the muscle weakness though.

Some of my fibro symptoms are worse - poor sleep, mind fog, aphasia, dizziness

Things that I have in common with some of the stories I read: Pain, the kind where you sit on the edge of the bed looking at the floor knowing that the first step of the day would cause so much pain that it would bring anyone to their knees (honestly a broken bone was nothing to this pain). I described it was feeling as though every bone in my feet had been replaced by splintered glass - THAT scene in Die Hard resonates!

I want to get up and do anything - but I can't even manage to get the dishwasher emptied daily - and I am my husbands carer!

The only real fear I have with FND diagnosis is that I might have to stop driving - how common is symptoms bad enough for that (as I haven't had seizures and my dizziness does not kick in while sitting).

Considering it took about 15 years for Fibromyalgia treatment options to be given to me I have a very realistic view of how long it will take for the NHS to get around to giving me anything other than CBT (which didn't work with my depression so I doubt it will do anything for FND). A surface look suggests that the fibro management is the same as FND management - Pacing, being realistic, enjoy the little bits etc.

Any thoughts of what I can try, expect or am I just being really lucky the rest of the symptoms hasn't kicked in yet?

Thanks

[Justdrea81]

OMG! You sound like my medical twin with the bile salt malabsorbtion, B12 deficiency, sleep disorders, Fibromyalgia and hayfever/asthma.

Have you had your vitamin D levels checked recently? I had low B12/Folate and a very very low Vitamin D. My neurologist said that my B12/Folate wasn't "bad enough" to cause all my symptoms. 6 months later he got a report that my vitamin d was low. At the next appointment he told a me a deficiency in all 3 of those things could definitely cause the symptoms that I have.

[M3rry in reply to Justdrea81]

Yep been on D3 for a few months now - if I wasn't so tired I would have spent more time sitting with my parrot (she has a UV light to allow her to produce Vit D and see all the colours she should - does help with my SAD but in the new bungalow the light isn't close enough to me to help.) I was surprised to get a D3 deficiency as I have been taking a good multi-vit daily for a few years.

But I think I had a prescription snafu - the bile salt absorber I take twice a day with food appears to be preventing the D3 from getting absorbed as well... This is due to the fact D3 is a fat soluble vitamin and the bile salt absorbers will affect fats as well. But I wouldn't stop that drug - I so do not want to return to the pre-treatment days, as bad as I am now I couldn't live with that as well.

[Justdrea81 in reply to M3rry]

MY malabsorption issues are from Celiac, GERD, and IBS. I have too much bile salts too. When my Vitamin D went too low I was taking 10,000 iu a day, 5 days a week. Now that it's in a normal range, I take 5,000 iu 5 times a week. I'll be on that and the vitamin B 12 shots for life.

[M3rry in reply to Justdrea81]

Bile salts must be reabsorbed in the small intestine or they will cause severe irritation to the colon - this can appear to be IBS or even one of the IBDs. If you haven't tried a bile salt absorber it might be worth checking if they would work for you - My gastroenterologist diagnosed me by giving me a prescription for colestyramine. Basically it is so vile no one would take it unless it works - and if it works it does so in a couple of days (average residency time for food in my get was about 14 hours! - before you ask beansprouts and sweetcorn).

Controlling my gut has removed a major disruption to the last few years - though seeing the capsule endoscope pictures of the damage to my terminal ileum really explained why I have vitamin problems.

Another advantage is that it also changes your cholesterol levels as bile salts are part of how your body processes cholesterol.

[Justdrea81 in reply to M3rry]

I tried the bile salts for a small amount of time. They made me feel like a zombie all the time and I couldn't handle it. I had my gallbladder removed as well, so that is something else that irritates my gut, I'm sure.

I'm working with an NP who has my on an acid reflux reducer, as well as low dose naltrexone (LDN). The LDN has been amazing for my stomach issues! All of the GI distress is gone now, except for nausea and GERD. I'm hoping both of those help with my gut. Isn't weird how if our gut is unhappy, it makes the rest of us unhappy too?

[M3rry in reply to Justdrea81]

Something many people are not aware of (or in the case of doctors forget) is that there is tissue in the gut that resembles brain tissue - it even suffers from migraine and epilepsy. I bet that FND can influence this as well.

I am surprised by your reaction - the stuff I am given doesn't leave the body - it stays in the gut and the worst reactions are complications of constipation. But things get different once they remove organs.

[Justdrea81 in reply to M3rry]

I had GI issues before the gall bladder had to come out, but having no gall bladder has definitely intensified some things. I had no idea about the brain tissue in the gut. That's really interesting and helps explain a few things

[Muddle-h33d]

I've had gut issues for years. Culminated now in sensitivity to so many foods. I had low this, that and the other, and very weirdly, when I cut out some of the things I felt I was sensitive to... like gluten, I began absorbing the things I'd not been able to before. My highest B12 had been 18. After 18 months of restricting my diet, including cutting down on the B12 foods I'd always craved and ate so much of, I had a reading of 151! Go figure??!! Well, an endoscopy to explore my GERD symptoms, which no one seemed to recognise, caused a full blown hiatus hernia, due to my supercrappy elastic system. I'd probably have ended up with this one day anyway, but it just brought it about overnight. So my diet is ridiculously restricted now and the wait for a dietician for support is 18 weeks. So I decided to see a medical herbalist. She talked about leaky gut syndrome. Whether or not I have it, who knows, but she is able to give good ideas about probiotics, multivitamins, etc, and talk about how to heal any damaged tissue of the gut. Worth a try. My nails were going orange, and the fatigue was beginning to crush me like never before. Since seeing her, my nails are nearly all pink again and I'm back to my regular knackered self. Imagined or not... I don't really care as long as it's working.

I don't know if any of that is any use to you. Food for thought perhaps... Pardon the pun 😉