Paraesthesia and tests

[Qwan]

I've not been diagnosed with FND or anything yet, but my conditions are definitely something neurological by what we can tell, which I've had for about 2 years straight now.

Paraesthesia being the main one, numbness, shooting pain, electrical feeling, pins and needles, icey/burning pain etc all the fun stuff, including spasms, and rarely partial paralysis (usually limbs).

It's all over my body, including face and sometimes tongue; after GPs suggested it could be prolonged anemia (10 yr history) some deficiencies, or possibly an autoimmune disorder like MS, we got me sent to a specialist who put it all down to anxiety without taking a proper history.

I finally saw a good specialist and she did some blood tests on a bunch of disorders, Rhumatoid factor, diabetes, coeliac, inflammation, creatinine,thyroid function.

Also in early Dec I'll have a Nerve Conduction Study.

I'm nervous that as it's been 2 years, any damage is permanent and they won't be able to help it. I want my body back, I want to be able to feel my hair, and touch my face without feeling like I'm touching electric, I want to have the heating on and not feel like Im wrapped in ice while still getting hot flushes...

I'm hoping the results will show something or at least point us in a direction. but mostly I want them to be able to just reverse it, even if it's reversing half the damage, I just can't imagine feeling like this the rest of my life...

In the mean time, I'm trying to learn ways to deal with this just in case. I'm learning what textures to avoid, and it's helping me form theories on how tactile sensory processing works, which is kind of cool.

If anyone here gets paraesthesia, do you know of any material for gloves that would be the least painful.

Silky materials feel icey and complex ones like wool feel stabby and scratchy. Not sure what my options are.

If anyone's had the NCS or EMGs it'd be great to hear your experiences too. I hope they can do follow up ones in other areas like the face if these don't account for such places, but I suppose that's only necessary if we don't have a full clinical picture.

Really, just talking to anyone would be great right now. I want to talk to my friends about it, but I think all of this scares them and they don't know what to say. So they usually say nothing and it's horrible.

[giltnane]

HI YOU POOR THING YOU SOUNS THAT YOU ARE REALLY IN THE WARS. I DO HAVE DEEP ACHE PAIN THROUGHTOUT MY BODY, SEVERE HEADACHES, NUMBNESS (DECREASE SENATION THROUGHTOUT MY BODY , NEAD(SEZUIRES ) POOR BALANCE POOR MOBILTY REQUIRNG A STICK OR WHEELCHAIR WHEN OUT OR MY SCOOTER. IN DOOR HOLD ON TO WALLS. SOCUAL SERVICES GOT ME MOVIED (ASSIATED) HAVE A Stair life and wet room, and other aids grips rails. lost voice in February. PAIN IN ARMS NECK AND BACK, dystonia in hands, tingling pain in groin and chest. diagnosed with Lacoste intolerance followed by realising gluten, wheat fruit with stones in it and varies other foods. also 2012 diagnoses with pan GI DYMOTILLITY HAVE FEEDING TUBE 20HRS A DAY 40ML AN HOUR. I WAS FINALLY DIAGNOSED July 15 AFTER SEEING PROF EDWARDS AND UCHL HOSPITAL . I DID HAVE THE EEG this is a where that attach electros to your head and monitor movement re light and wye movements , doesn't hurt but if you are light sensitive then this may be a problem. I have had many nerve studies but many test are clear with FND. finally getting a diagnosis after almost 5 years is great. I am GOING INTO Hospital Monday for 5 day to be assessed whether further rehilbilation programme will be suitable for me. I have in the past had physio, ot and speech therapy but not successful. I am HOPING THAT as these are train and experts in Parkinson's, Ms, stokes and fnd that they will have a new edge to help me. I don't want to live the rest of my life NO , VOICE LIMIT USED OF MY HANDS POOR MOBILTY AND PAIN. THE FND THEY FEEL WAS CAUSED BY PREVIOUS OPERATION, AND BIOPSIE IN LEG. THEREFORE MAKING FAR MORE DIFFICULT TO OFFER SOME TREATMENT. AS YOUR Consultant or GP about the inpatient programme there is one I London and one in Scotland I think. good luck . sorry I can't offer advise on better material I hope some one else may have the answer . have you joined FND closed group? I have and they are very supportive and knowledgeable and some one else may have similar experiences to offer tips . xx Jill

[Qwan in reply to giltnane]

Thanks for the reply. I'm not diagnosed with FND so perhaps can't yet join an in patient programme yet.

I have difficulty with Drs, they often tell me I can't access requested support until I get a diagnosis and when I'm diagnosed they say that support isn't available or doesn't exist!

Right now the Neurological issues are undiagnosed, so mostly just the testing stage but your reply was really helpful.

I really hope this inpatient programme is what you've been looking for and you find significant improvement.

It's so horrible when we lose some functions we often take for granted that we'd always have. I hope there's some emotional support available too. This is something we should get for so many conditions really.

Thanks for mentioning the group, I was just considering joining too!

Wishing you the best and you're in my thoughts. xxx

[giltnane in reply to Qwan]

hi Qwan hope you get your much needed diagnoses. I have just come back for a 5 day assessment . it is very interesting and the team is very nice. they have excepted me for the full 4 week inpatient programme. I hope you can join the group take care

[Qwan in reply to giltnane]

Ohh congratulations on the acceptance, I really hope they help!

And thanks about the group mention, I just joined and it's got a very good vibe.

[Rachh8]

Hi there just to let you know that vitamin B complex has helped my tingling in my hands and vitamin D has help with shooting pains in my legs and balance - not sure if you've tried these or if you open to vitamin therapy but I thought I would share it anyway in case it helps you, God bless. FND Hope group on Facebook very good x

[Qwan in reply to Rachh8]

Thanks for the reply. I'm told a lot of vitamins could be responsible. It's possible low vit levels are aggravating it, but because it's so severe (constant for 2 years, the entire body, not just the extremities), my Gps and I don't think it's the real issue here. but of course basic health needs shouldn't be ignored and I know that low B12 can look like Dementia, and low potassium can cause paraesthesia, so we can get some severe effects from low vitamins.

My B 12 was tested and its not high but it's within the 'normal' range, although 'normal ranges' are a questionable concept in itself haha

I'm low in vit D and Iron and believe that's a possible effect of that, also in thyroid problems which I have, but they're not medicating right now...

Anyway thanks for your reply. Anything that can help is worth exploring, especially with low risks/side effects.

I'll definitely check out the group. Thank you. xx

[Default_1]

Hi there @ Qwan re: paraesthesia

I'm kind of in a similar situation with very similar symptoms that affect my hands only. The thing is that I have been diagnosed with RRMS and have sclerosis scars in my neck and brain that I thought accounted for the symptoms. They prompted referral to a neurologist and MRI scans which all tested positive for MS.

However the Neuro rehab team are now suggesting that my MS symptoms are exacerbated by emotional difficulties and referred me to psychology services. Psychologists says she has no knowledge of MS and can't say whether this is the case so I'm in limbo as they both bat the ball back and forth!!😤

I use smooth nylon type gloves from a fancy dress shop when handling paper and cloth. Leather gloves are worn for hard surfaces like my walking stick. I also have thick fluffy fleece type gloves (normally worn to dry hair after washing) that I wear when sensory feedback is too much and need to feel nothing!!!

I find this very frustrating and no one seems to be offer any advice other than nerve pain tablets called gabapentin. They sometimes take the edge off but I haven't found anything that stops it.

I'm really interested to hear how you get on with the nerve studies and tests as these have not been offered my way.

I wish you all the best