hi I have just been diagnosed with fnd, and find my gp is not helpful at all , the neurologist sent a letter stating confirming fnd and didn’t need to see me again, gp also not interested.
I finding it all very confusing. Also I have trouble with my left foot with itching and burning and the skin going hard, is this something different or can it also be a part of fnd. Thank you.
Hello ,I think you will find everyone with FND has been delet with in the same way, once you have been diagnosed with the condition noone wants to know ,as for your foot maybe you could talk to your doctor or your pharmacy who is as good as your doctor. Good luck and look after yourself.
Thank you ☺️
This is all too familiar to me. Did the neurologist include the 'ruling in' signs used to make the dx? If not I would suggest asking for a second opinion. You can also give feedback about your experience via Jon Stone's website. I don't think your current symptoms are listed as symptoms of FND and I agree with Littlecook's suggestions.
hi thank you for your reply 😀 I had stroke like symptoms tingling in foot hands arms face tremors really bad electric stabbing feeling s in my hands feet dizzy spells and double vision also went blind in left eye for a few minutes. Headaches to it feels like something is crawling under my skin to sometimes I have collapsed a couple of times to. I get pain to and walk like I’m drunk it’s all very distressing 😢. I kept going to gp they said it was all down to stress , I have had all the tests done the white spots on my brain they said is down to old age I was 59 when they were done, one of the doctors just said I’m a mystery. Then neurologist said it’s fnd
My skin is very sensitive to. I also get the symptoms on the right side to but mainly on my left , to be honest this has been going on for nearly 2 years since a incident at work which was very distressful so I did put some of it down to that and medications
Thank you for your help and support as think there isn’t much out there 😀
If your GP is not being helpful, it may be due to his/her own ignorance ..very common. You could go to the FND Action website, where you will find an info sheet for health professionals. You can take it yourself to your GP, or the FND Action website, will send it for you ..but it may not reach your particular GP, if you have such a luxury. Otherwise, try and educate your GP, by giving him/her websites and being blunt and asking politely ' Are you familiar with this condition, because I am in need of help.' Ask for a referral either to a local/regional neuro science centre, or one of the FND specialist clinics that are listed on the FNDHope website. Most contributors here have had to fight their corner ..and it's the only way things are going to change, and we are treated on a par with other patients with chronic conditions .. so please be vociferous.. best foot forward even if Always pink needs to change to Seered!
Thank you ☺️
I found this:
What Nerve Pain Feels Like
The perception of pain varies with everyone; terms such as stabbing, prickling, burning, tingling, and other descriptions have been used. Nerve pain, also called "neuropathic pain," can be difficult to live with, but for most people, nerve pain can be reduced.
Understanding Nerve Pain
Nerve pain is usually due to damaged nerves that send false signals that result in chronic pain - following on from this, my friend had CRPS but with physio and following a strict exercise regime she was able to use her hand as normal.
Other advise I found:
Anyone who has nerve pain should get a full physical exam by a doctor. Get checked for diabetes, high cholesterol, and blood pressure. Tell your doctor about all medicines and dietary supplements you are taking. Get evaluated for recent viral illnesses and toxins to which you may have been exposed. Also, discuss your full family medical history with the doctor.
Maybe a full health check?
Is your skin sensitive to light touch?
Hi thank you 😊. Yes my skin is sensitive to light touch especially the toes also my skin has dried up severely 😢. I had most tests done but they said it’s a part of the fnd just gave me cream
I have been exposed to toxins as I worked in a laboratory but doctors don’t want to know
Hope your doing ok and thank you for your support 😀
Hi
I was researching neuropathy conditions and came across this condition: Dysesthesia, as some of the symptoms are similar.
I don't believe in self diagnosing but there are medical tests that can be done to rule it in/out.
I think when they mention toxins they may mean direct contact (touch), so wouldn't have thought your toes would have been in contact.
Hi thank you for your support
Yeah when I mentioned the toxins I ment I have breathed them in which can affect my brain . They diagnosed fnd on my other symptoms which they first thought was ms or lupus but the test were clear. . I also went temporarily blind in my left eye which I think maybe connected but been told that that’s separate and a tia .
Hopefully the meds they have given me will help. Thank you hope your ok 😊
I thought that may be a possibility too, happy to share the article I found.
Have you had your blood sugars checked?
I am sensitive to light touch too, with my feet very sensitive. I have found a quick foot massage helps to reduce it. Some advice on this is to be found at Petra Fisher Movement, 'Free your Feet'.
Unfortunately, your experience is common. Because "they" have no answers to "cure" a myriad of symptoms, they are helpless and send us away.
Keep reading medical information on computer and you will educate yourself about the new researchers who have the equipment to see changes in the brain. It saw FND compared to a problem in the software of the body. The computer is fine but it keeps getting strange messages from the wiring in the brain. (My very simplistic version.)
Reading here is helpful for me because one sees that others have similar weird body symptoms that are unexplained. And are dismissed by medicine.
With a very rigerous focus I have reduced my symptoms greatly and life is good. Look to self care!
Thank you
It’s nice to hear a positive message hope all keeps well for you, it does help being on here it is very encouraging to see we are not alone
😀
I try and think of it as "if there is too much activity in one part of the brain" which is overloaded by one sense, lets take a few other senses up a notch or make adjustments to decrease the input of the other, kinda balance it out. If you are going into a new environment, think about what may trigger the symptoms and be prepared.
A lot to be said for DIY!
Yes but you also need to think whats the worst that can happen.
I have really itchy feet and hands all the time it's much part of this condition.
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