FND Functional Neurological Disorder

New diagnosis and before diagnosis
1

Hi, Ive not visited for a while - been trying to just get on with things…

Brief recap main issues were buzzing face scalp feet legs and hands (both sides) - worse when im hot (bath) or after exercise & numb spots on face tip of nose tongue roof of mouth and lip. Weakness in left upper arm (now in both), urge incontinence (minor) and brain fog/confusion … no issues with B12

Had MRI (no contrast) nothing found - it said…I have lesions described as Intraosseous Hemangiomas in upper thoracic spine - but not thought to have any clinical relevance ie not MS, minor degenerative disc disease of L4/5 and established degenerative disc disease in the lumbosacral joint L5/S1 - nerves are not compressed. Discharged from neuro.

Had musculoskeletal assessment (February) who just referred me to a pain clinic -

Requested Vitamin D blood test from GP - Turns out I’m very low and have been put on supplements

Pain Clinic Wednesday (may) (we move quick up here!) Without any further tests (just one of them stupid mood questionaires) Dr. said I have functional neurological disorder - Im really confused - after reading a bit about it I still know nothing - they are looking to prescribe either gabapentin (sp?) or pregablin (sp?) for the buzzing after he looks at a recent paper on if it passes through breast milk (still feeding 10mth old).

Would they not have to do other tests to rule things out? like nerve conduction tests and i don’t know what else? as far as i know the dr. i saw on Wednesday was not a neurologist - should he be saying I have this fnd?? I cant find anything that links symptoms worsening in heat with fnd - has anybody else been diagnosed with this? Should I be asking for other stuff to be ruled out -

Really confused - thank you for taking time to read x Emma x

2

Hi Tingles

re the medication and BF call up your local hospital’s pharmacy dept and ask them if either/both are contraindicated. From memory I believe gabapentin might be though not 100%

Did you take vit d in pregnancy as that and BF can rapidly delete vit d stores especially if you don’t spend much time outdoors. At least you are supplementing now though.

In terms of your other tests if MRI clear I would say it’s unlikely that they’d be arranging nerve conduction tests for you. Why do you think you ought to be having these? Perhaps have a word with your GP.

I do know that heat intolerance can be linked to ME which can be exacerbated post pregnancy. Has this been mentioned to you Many symptoms mimic MS

Jane x

3

Hi Jane, many thanks for your reply, nobody has mentioned me to me … Isn’t this characterised by extreme fatigue? I’m not tired … Especially now youngest has started to sleep a bit more X

fnd in my opinion is like them saying we don’t know so we will call it this and Medicate … I don’t want to take meds if I can avoid them … And am inclined not to until either problems get worse or I get something clearer than the “we don’t know diagnosis” …

had a weird symptom pop up so going to ask about that in another post

Kindest thanks

emma … I will ask about me next time I’m at the dr’s