Possible Functional Neurological Disorder diagnosis , any advice please 🙏

[Maynan17]

Today I saw a Neurologist after an 18 month wait since referral.

From my symptoms, an examination of reflexes, coordination and exclusion of other possible diseases he believes I am suffering from Functional Neurological Disorder (FND) along side my Fibromyalgia. He is putting me forward for a brain MRI scan as he thinks this is a sensible approach to rule out any lesions with a plan to then follow me up after to discuss results. If all clear then he will commit to FND diagnosis , a plan moving forwards and treatment.

Meanwhile was wondering if anyone else on this forum has FND as I know little about it and what I should expect if FND diagnosis is confirmed ,what treatment is available , helpful resources I can refer to and any coping strategy’s as if fibromyalgia wasn’t enough to contend with!

TIA

[CM1EDSUK]

Hi - pleased you have seen a neurologist hoping to help. Whilst he is referring you for a MRI to confirm, or rule out, FND, if you wish to learn more about this, the following is a good resource: fndaction.org.uk/

[Maynan17 in reply to CM1EDSUK]

Thank you 🙏

[Blackwitch]

Hi! I too have been diagnosed with FND on top of Fibro, ME/CFS, RA with Secondary Sjögren’s and Degenerative Disc Disease with Rotational Scoliosis, and the list goes on. I hope you get more help than me. I was just referred (for the fifth time) to Pain Management. The last time took two sessions to gather my medical history which my GP had not provided. I then had a phone call where I agreed to see a psychologist and the next I heard, I had been discharged from their service! No explanation was given other than I hadn’t contacted them within 28 days. I was just waiting for an appointment.

I get the feeling that nobody knows how to treat me. FND, Fibro, ME/CFS seem to overlap and I have so much sensory overload, especially hearing. I have had a constant headache for at least 6 months, have had a brain MRI (It seems I still have one that is OK). I’m waiting to start new meds for RA but apart from that, there’s really nothing that helps. If you find some answers, please let me know. I’m feeling pretty much let down by the NHS. I wish you luck and hope you get some answers soon. xx

[Maynan17 in reply to Blackwitch]

Hi thank you for your reply and so sorry that you are suffering. As well as Fibromyalgia I also have OA, spina bifida occulta, hypothyroidism , RLS and like you the list goes on.

Since waiting to see consultant my symptoms have worsened and not coping well with it all but soldier on as we do albeit hard with all other comorbities.

Seems we both have been let down by our GP as the neurologist could not se e that he’d received a referral letter and so rather than having a general picture of my issue beforehand I had to discuss the whole thing from beginning to end, I was not happy as you can imagine!

I will certainly let you know of any treatment plan suggested , if any for myself that might help you moving forwards. It seems from the little research I have done there’s not much in the way of therapy out there and medications not prescribed.

Sending gentle hugs and take care.xx

[bookish in reply to Maynan17]

If you haven't already investigated methylation, vit B12 and folate (and B6, B2.....), can I suggest that it might be worth a look? You may possibly have an issue with MTHFR or COMT or an undiagnosed B12 and/or folate deficiency (functional or not). The one-carbon cycle is complex with many places where problems may occur (both genetic and epigenetic) and I haven't found the NHS able to assist with any of that as yet, although I am having genetic testing at the moment. I personally (having some of your conditions, but not all) found that I improved with supplemental B12 and improved further when I added folate (B9) in the form of methyltetrahydrofolate. Folic acid doesn't seem to help me, just builds up in the blood, and that is not something desirable. The precise vitamer/s do not matter to everyone, but can make a substantial difference to some of us. Serum B12 testing alone cannot rule out a deficiency, indeed there are no tests which can, hence the need for a good history (yours and family, as B12 metabolism is strongly genetic) plus signs and symptoms. But don't supplement Bs before full testing as you will make a hard to spot issue even harder to spot. Your full blood count etc will give you some clues, perhaps, if you look back at your old results. Please do not let anyone give you a folic acid supplement without being completely certain of no B12 deficiency, as it can make things very much worse. Supplement B12 first (hydroxocobalamin, methylcobalamin, adenosylcobalamin or cyanocobalamin - I use the first three but not the last) then add the folic or folate or folinic as required. Unfortunately I have found that neurologists don't know enough about B12 or folate metabolism and assume that you have already had testing before you get to them which would have found a problem - which is commonly not the case. Cheers

[Blackwitch]

There is no continuity of care. I think a lot is down to obviously overworked GP’s and a well outdated computer system. I also live on a county boundary so don’t see consultants in the same county as my GP. Our ICB (was CCG) have blocked some of my treatment because I lived in a different county to where it was requested. 🙄 It all gets very frustrating. I have a list of all my health problems/disabilities and how they affect me, full medical history with all the medications I’ve ever taken (and mostly had bad reaction or become intolerant of), all medications I’m taking and all the symptoms I have at the time. I have it all printed out take two copies with me to all my consultant appointments, one of which I hand to them at the beginning. It saves so much time and also helps when it’s time for a PIP review. Have a great day. I’m hoping the warmer weather will make us all feel better. ☀️ xx