Hi again, I watched an episode of HOSPITAL recently. The Walton Centre Liverpool was featured. That`s where I finally got my diagnosis of Spinal PPMS after 22 years of searching! They are the only centre of excellence dedicated to neurosciences in UK.
On that programme there was an item about FND. There was a specialist doctor who had organised specialist physio for FND. She found it was having really good results in reducing the symptoms for patients.
Unfortunately the list to take new patients had closed and funding for the scheme was ending. She was fighting to get it extended.
This doctor said she found the cause for FND to be lodged into past trauma in patients. One lady described what had happened in her life and there were some awful examples.
If you would like to see this programme, you should be able to get it on BBC i player.
Thanks Bouds. I did see the BBC show. It received a bit of a mixed response from FND sufferers. Many take issue with the view that it is caused by past psychological trauma. Personally I donāt as I experienced a traumatic event shortly before my symptoms began.
Fortunately I donāt suffer from the non epileptic seizures that the patients on the show did. From reading it appears to be this symptom that generally causes the very severe cases of condition. Coming up 5 months since it started and it would not be apparent that I am suffering from a condition like this to an untrained eye. I have learned to listen to my body and not push my limits. Not being able to exercise properly is irritating. I feel a bit like a stiff old man in a fairly young mans body. However, touch wood I should be able to manage this and still enjoy an independent life. Thanks for your support. I will continue to check in on the forum from time to time as although I have not been diagnosed with MS I have gone through the diagnosis process so can hopefully add some value and provide support to people on this forum.
Hi Jonny. I am relatively new to this forum. I have read through this thread with great interest.
The way you have gone through your journey, despite the knock backs the resilience you have shown has been a real encouragement.
If you still have any nagging doubts, donāt be afraid to revisit ms, as pointed out even if not diagnosed now, if it is ms lurking in the background it will eventually come out.
In the meantime there is a lot of support for FND suffers and effective treatments to help manage symptoms.
First time back on the forum for a while. Had to re-register as had an issue with my old email address.
So it has been a couple of years since my last update. It is fair to say I am feeling much better then I was. I still have double vision but have a stick on fresnel prism on my glasses which brings things back into line.
A part from that I get some anxiety issues periodically. Not extreme but it does hamper my ability to fall asleep a couple of nights a week as I struggle to get comfortable before I eventually relax and drift off.
I still donāt know the root cause is but I am able to live a normal life without this effecting my work and like I said it is much better then it was so I am lucky so far (touching wood). At my lowest point a couple of years ago I did not think that would be possible so I am grateful. I think it is stress related and when I received some comfort that the MRIās were clear I relaxed and started to get better. The brain is clearly very complicated and during the whole process I was shocked by how little the experts still know. I will book in another MRI next year as a precaution. Fingers crossed for everybody on here
Thatās really good to hear! I guess stress/anxiety can do crazy things to the human body.
Iām currently in limbo for MS with untill now a clear MRI of the head, first neurologist calls it stress related (especially since he knows we had quite a stressfull period). I do want a second opinion and get my spline checked.
Main symptoms:
Painfull shin left (nerve pain)
Painfull buttock left (nerve pain)
Tinnitus (mainly left)
And lack of energy; 20 minutes of walking is the max. at the moment.
@Jonathan316 Do these symptoms relate to your symptoms back then? Could they be (mainly) single sided?
Sorry for my Englisch, iām from the Netherlands.
@NewHere i had so many symptoms including those you have mentioned. It makes sense to get the spine MRI. I was talked out of the lumbar puncture. Hopefully this will be all clear and you can take some comfort from that and start to feel better
I would recommend doing the mindfulness sessions. There are some great Apps that helped me
@Jonathan316 thank you for the kind reply, i really really appreciate it, limboland is not a nice place to be in.
Yes, i will pursue the spine MRI and maybe even a lumber puncher, just for my own mental health . I guess if they al come back negative chances of MS are low.
Do you consider yourself fully recovered? I hope you do well.
I will have a look at the mindfullnes app. Thanks again.
My health is not what it was before but not too far off. Basically I will have the odd day where I will tire and by the end of it I will have some of the symptoms but it is nothing like it was. It has been 2 and a half years now so canāt complain
. I guess if they al come back negative chances of MS are low.