Counting down to Neurology Appt

[tulip92]

After what seems like a lifetime of waiting and wrong turns, there are only 2 weeks until my Neurologist appointment. My left leg weakness is allllmost back to normal - I can get 13 single leg calf raises vs 20 on my right (at the worst about 2mo ago it was 3 vs 20) and can finally curl the toes on my left foot. My running and cycling is symmetrical again which is so pleasing! There has been no improvement unfortunately in my pins and needles and pain in my feet - which has an achey/burning quality, overlaid by seemingly random bursts of stabbing/shock-like pricks of lancinating pain. I also get pain from totally innocuous stimuli like the carpet or sheets on my toes. Overall however the level of disability I experience from my symptoms is tiny. I am living life effectively and healthily as usual, albeit with a little more irritation and anxiety.

I am coming to terms with this being a functional disorder however after MUCH research I cannot find any information about effective treatments for sensory symptoms where there is no important motor disability. I don't really need pain medication either because the worst symptom is the pins and needles, and the pain is not very severe and is usually unpredictable. This leaves me feeling like I will never be back to normal. I can't yet accept my symptoms as a 'new normal' either. I hope that my appointment will provide me with some peace of mind to confirm or deny that I have FND and then my heart and mind can start to heal.

[Loopylou100]

Hi I have functional sensory disorder, it started after the birth of my 3rd child. I found the best form of treatment for this is to try and ignore it. This was on the advice of my neurologist. Concentrate on anything but the symptoms, over time a long period of time I add but def over time it steadily goes. Mine has returned because I've been stressed and poorly. It did go and it went because I focuses on anything but that. I'm noticing again that if you ignore it, it does ease up. Have you tried this? I hope this is of some help.

[tulip92 in reply to Loopylou100]

Hi Loopylou100! Thank you so much for replying. I was beginning to think I was the only one with mainly weird sensations as the symptom. I can't really actively ignore it, but I know it bothers me less when I am distracted. It definitely gets worse when I am anxious or unwell. It makes me feel better to know there is someone else out there and that you have had some success. Thanks again.

[Loopylou100 in reply to tulip92]

Distraction yes that's probably a better word, distraction def helps. I hope things improve for you soon

[Lucy-15]

Hi there ...it was interesting reading about your left leg weakness as I've had similar symptoms for nearly 2 years. Ive improved too with help of 5 day Neuro Physio treatment in London that gave me techniques to 'distract' your brain so my limp has now gone and managing with out my walking stick.

With my left drop foot I developed 'plantar fasciitis' under my arch ..sharp stabbing pains like you describe.

Rolling my arch on a spikey rubber yoga ball ( or tennis ball) every night really helped. It came on as I wasn't able to use my left foot correctly to walk for so long. Anyway hope this helps. Like you, accepting this is now my new 'normal' is tough at times - but then I look back to remind myself far I've come.....take care X

[tulip92 in reply to Lucy-15]

Hi Lucy-15 That's so wonderful you have had great improvement! I should definitely give my feet a good massage because my arches are also tight. Good tip!

My weakness came on very suddenly, worsening over about 3 weeks. It disappeared on it's own gradually over a period of about 2 months and counting. I had some stressful life events in the lead-up to the weakness, but I was psychologically very well and managing my anxiety generally, so it was a surprise to have this problem.

[Lucy-15]

Hi there...pleased your improving too ! I'd had 6 years chronic back pain then a denervation to help the back pain ( worked a treat) in L3-4-5....no nerve damage but it may have triggered this FND, left foot drop and left leg weakness and left arm weakness/heaviness

The toughest bit I still find is 'pacing' making tough choices 24/7 what I can do then what I can't ...but this has helped me avoid the 'boom or bust' my Neuro Physio referred to ...which is worse for sure for me.

I can't manage my loves in life like ballet..yoga..Pilates...walks along the beach..but found new things to enjoy...book club...swimming...Jacuzzis(great for tight muscles) gym exercises..mostly arms...few mins treadmill :)....etc....

Keep me posted on your progress too. Have a good weekend. Thanks Jane