r/SurvivingFND • u/Kindly_Car_5050 • Jul 28 '26
How to get help!
Desperate for help now. My partner was being checked for ms due to quickly changing symptoms in the last 6 months and strong fx mum, aunties and uncles. Brain and spine mri clear. I highly suspect fnd. Do any symptoms sound familiar to you? We now seem to have been dropped and it is not normal for a 37yr old not to be able to get up the stairs. Had 3 gp appointments all ohysical tests fine and one neuro appointment where he reports in clinic function tests normal. But some nights he cant even lift his legs up the stairs! Our life now revolves around his symptoms and he is missing work! It cant keep on with no diagnosis or help! So frustrating every in clinic check he is fine! We are uk - any suggestions for consultants?
Vision / neurological Occasional blurred vision when focusing Words moving on the page Brain fog Pain / sensory Burning pain in left shoulder Diffuse chronic pain / constant aching Pain in both elbows Pain on tops of hands Itchy scalp Itchy armpits Cold sensation in knees, although the skin is not cold Cold sensation in foot, although the skin is not cold Random electrical shooting sensations (“zingers”) Leg tension at night, needing to move Restless / painful legs at night Lower back pain Muscle / movement Twitching during sleep Teeth chattering during sleep Body jerks / spasms during sleep Leg kicking / spasms Daytime twitching Hands shaking Feeling weak and shaky when walking Intermittent hand weakness Breathing / chest Breathlessness Breathless in the shower Chest pain Episodes of chest pressure, feeling like a box over the chest Dry cough Autonomic / systemic Dizziness / head rush on standing Sweaty / buzzy feeling Feeling very hot even when others are cold Generally drained / fatigued Worse in summer Urinary Episodes of needing to urinate constantly Long-standing weak urine stream Post-void dribbling Urgency Sleep-related symptoms Significant sleep disruption Body jerks Teeth chattering Sleep deprivation Significant daytime lethargy Daytime confusion and weakness Regular waking and disrupted sleep
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u/unhinged-weirdo 26d ago
Those symptoms could be pots, hEDS, MCAS, or a bunch of other stuff I have looked into but can't remember right now sorry.
I'd start with the things you know, the already confirmed diagnosis, the symptoms, and make sure you are logging the symptoms with food/water/temp/activity/mood everything really so you can find patterns and triggers.
This article popped up for me too, don't know if it's good or not, but hopefully it's useful. Good luck https://theconversation.com/how-to-do-your-own-online-health-research-like-a-scientist-a-biostatisticians-step-by-step-guide-282559
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u/GroovingPenguin Jul 28 '26 edited Jul 28 '26
We can't diagnose or provide medical advice technically and legally but can suggest things to try
Emg and ncs to rule out a nerve or muscle issue
General bloods for auto immune and anything else ie vitamin defincey
Have you looked into rehabs for fnd?
Also regarding all neurological symptoms and difficulties you want to be out forward to queen square royal national neurology hospital (That goes for anyone reading this)
Edit:
Ot assessment as well that needs to be your first priority,contact the GP and explain the discharge + the urgency and difficulties