Does FND get better or worse as time goes by?

[Lisa1976]

I have had Attacks for nearly 20 years many MRI scans ct scans etc, to be told I had MS then told it wasn't. Finally after 4 months of being in and out of hospital with stroke like symptoms I have been diagnosed with FND I had a severe attack in January the time before was 7 years ago from which I recovered fully this time however I am not recovering and have had three more episodes does FND get worse?

[VivienneWaterworth]

Hi Lisa. There is no straight answer to your question, unfortunately. Some people have one episode and never have any further problems. Others have their symptoms get better as well as get worse over time with no rhyme or reason to how it comes and goes. Others steadily decline, while others are completely wheelchair bound then suddenly have a miraculous cure and never look back.

I personally had seizures and a variety of neurological problems during the 1990s, then the symptoms went away for 6 years until I had a brush with cancer plus lots of other traumas all too close together, when I started having seizures again. Again they went away for a while, but came back after blinding pain after anal repair surgery when I passed out from the pain around 30 times in 7 days. I got PTSD from it and I have had FND symptoms since then.

Now the symptoms come and go according to their own timetable that I have no awareness of. Some weeks are good, others not so good. I might go for several months with only 1 or 2 seizures, other times I might have lots in one week followed by a good week and then have lots the week after. All over the place.

I have had various tests, mostly not for FND but for other medical reasons, but they never find anything that could be causing my seizures. I doubt they ever will, so I agree with my doctor that it's actually a waste of time and money to do further investigations at this stage….with one exception. I suspect that Functional MRI or Functional imaging 'might' perhaps show something, but I think those tests are very expensive and no-one has ever really suggested using them for diagnosing FND, as far as I know. Perhaps one day???

If you are looking for a good support group, might I suggest that you go to the FNDHope.org website and following the link there to a Facebook support group. The Facebook group is very supportive, and that website is the best available for info on FND.

[Lisa1976 in reply to VivienneWaterworth]

Thank you for the reply I did try to join a group already on fb but it was a closed group will try to join through the website you've suggested. Once again thanks for the reply and really hope your seizures become far and few in between in the future

[VivienneWaterworth]

A lot of support groups on Facebook are closed to keep the spammers out. Just apply to join and you will be welcomed with open arms.

[janejam]

ihave been treated for parkinson for 9 years to b told 6 moths ago i have FND. I have been waiting 5 months to see DR STONE a specialist consultant at Western General Edinburgh. i have had numerous attacks, i am having one now which has lasted 6 days, Iam at my wits end and cant cope with this much longer, it affects my whole left side. Also i am still being prescribed parkinsons medication.