Following the Re-Active Masterclass, I was sent guidance for my GP, which I sent them this morning and they acknowledged and confirmed would be passed onto their Clinicians.I received it via email as I don't think its been added to website yet but have requested this and when I find it, I will be sure to share.
Lets educate our GPs 
That will be such a good thing to have.
Before sending it I read it and it was telling them to look out for this and that and highlighted not to dismiss other illnesses.A couple of key points I highlighted in my email were:
Information alone is not a treatment in itself, it’s just the starting point for treatment.
Patients with FND are as disabled and have as impaired a quality of life as patients with other neurological conditions."
There is some training available for GP's , run by St George's in London (Mark Edwards domain). It's online, details available futurelearn,fnd
Lets hope some take it up. Hopefully the Clinicians will read it at my surgery. I have yet to fill out profile of Re-active app but did notice that members were introducing themselves and the some of the core team were replying. It has about 8 chat rooms or so on different areas of FMD, will update.
Did you receive because you enrolled or is it available to all? Have Neuro appt. Monday…wish I could share it with him!
Hi, I received it in an email thanking me for attending the Masterclass, I downloaded it but can only add images here, hence asking them to put on website, so I can share. I will check if its there, if not I could check the app for members. Haven't got round to introducing myself and telling our story.
I have forwarded the email to the founder of Re-active but we do have an 8 hr time difference and suggested it get posted on Hope too.
If there is still scope for informing GP's about fnd, and their chance to get ;'up to speed'' maybe we could add that as an anxiety driven condition, it is being exacerbated by our knowing there is effective treatment out there, but no access for us, and nowhere for them to refer us to, so they need to be more proactive.
It was really informative, some of which I had read before and most referenced to experts in the field.
I found it, it is this article as a pdf (think you get option to view as pdf and then you can download and print):
rcpjournals.org/content/cli...
Yep, downloaded and its the same article, although noticed it was a few years old. Good luck tomorrow x
Honestly, I'm a little worried about sharing the content with my GPs since the Re-Active Masterclass had a few misinformations in it 😔
Did you join, And what was incorrect?
I did - there was a slide which stated how common FND is (I think it said that FND is the second most common Neuro diagnosis) which is incorrect. There have been a few medical journals that've stated this and had to later make a correction. FND is 5.5% of outpatient neuro diagnosis from what I remember, which is nowhere near the second most diagnosed.
Here's an article explaining it: virology.ws/2024/02/09/tria...
Did you read the GP sheet and noticed anything else? Did you join Re-Active?
I didn't end up joining re-active.I haven't read the GP sheet, not sure if the same thing was put on it or not.
It just worries me that the presentation was so well put together yet still had misinformation on it.
The GP paper was written 2021 and referenced Perez and others, will check it out. On another note, was it just me or did you think a lot of time was given to promoting their service and perhaps (although lots of costings referenced) a little bit out of reach (and much needed) for long time sufferers that have had to give up work.
I joined, yes, anything to help us navigate this journey but can't help but feel if it was more accessible (as only a limited number of externally funding places) the figures would still stack up.
It was very promotion heavy, which was a little disappointing. I thought they'd be tackling it a bit better considering they're supposed to be the specialists but I suppose they've got to make money somewhere, right?I highly doubt their assistance would work for me, since they kept talking about people who've had FND for a couple years while I've dealt with it untreated for over 20 now.
I've had some therapy and done my own work and it's still made no improvements, so I doubt I'll be back to work anytime soon.
Not sure if this helps, but FND Action also have an Inform the Doctor campaign with a PDF that's pretty concise.
fndaction.org.uk/informthed...
It also has options to send the document to your doctors, whether by your own accord or giving them the info to do it for you.
Thanks, pretty sure read that one too. Sorry to hear you have endured this for so long.There are others on the site that have had this condition for a very long ti.e too.
I just need to break the cycle and am at a loss as my recent post shows.
No problem.I'm unsurprised that so many have suffered for so long.
Breaking the cycle is the first step, but it's so difficult to put cogs in the works when there's a barrier protecting it.
If there's anything I can do to help, or if you need a chat at any point, let me know.
I'm not the most active but I reply when I get email notifications 😊
Guess this needs to be corrected to:
Epidemiology of FND (extract from GP paper)*
FND is a common cause of disability and distress, especially in neurological practice. Functional disorders represent the second commonest reason to see a neurologist after headache. More tightly defined FND still accounts for at least 5%–10% of new neurological consultations.
Estimates of incidence are conservatively 12 per 100,000 per year. Based on this, around 8,000 new diagnoses of FND are made per year in the UK and around 50,000–100,000 people have it in the community. FND disproportionately affects women (around 3:1) although, as age of onset increases, the proportion of men affected increases.
Incident cases demonstrate that FND can occur across all ages, from young children (although it is rare before 10 years old) up to patients in their 80s.
* No matter whether its the 2nd, 3rd, 4th or 5th prevalent condition in neuro clinics (that still a lot of people), they really need to do something about helping all the people around the world suffering and be given proper invention.
Yeah, they need to fix the figures to display the actual findings of the report.Especially considering it's one of the reasons people are being misdiagnosed with FND.
That said, the prevalence of the disorder shouldn't indicate how much or little support people with it get. We should be supported as much as people with epilepsy, not just be left to fend for ourselves.
The information sheet wasn't written by Re-active it was a medical journal paper.
I, like LadyMershell, was disappointed in the class and its emphasis on promotion. Also noted the incorrect siting of FND as 2nd most common condition seen in neurology. That information has been debunked by David Tuller. It never made sense to me. If FND is so common, why are so few doctors even aware of it?
That said, I do think Re+Active is a great resource. Though I didn't join, I do think its defintitely worth a go.
Saw my neuro this morning. Much to my surprise, he took quite a bit of time with me. We discussed what my options going forward are, including continued neuro PT, Myofasical release treatment through OT (both requiring referrals from him), trials of various low dose anti-depressents (not ready to go that route yet), muscle relaxants taken just as needed for pain, like at night, CBT. I will now be seeing him annually for review unless something takes a turn for the worse. (Fingers crossed that doesn't happen!)
We did talk about glutamate levels and whether they could have an affect on FND. Too much glutamate is usally seen in people with Stiff Person Syndrome. My spinal tap did not test for this and usually does not. Since my problems are predominately left sided, and excess glutamate would affect the whole body, he did not think it related to my symptoms. As far as too little glutamate, a good diet and exercise are the best way to achieve a balance.
Great that you are getting support, I have been having a discussion on Chronic Headaches and asking for recommendations and one member told me about her coping therapies and medication.
My biggest takeaway was going down the natural remedy route and purchasing some aromatherapy rollers, carrier oil and essential organic oils plus a guide 😊
Found that peppermint, lavender and chamomille was a good blend, others included:
Will be interested in hearing how you fare with this!
I'm embarking on a fast mimicking diet for 5 days this week. You can purchase a kit or get recipes on line. Fasting has proven to be helpful with autoimmune diseases, clearing away old damaged cells. Figured it was worth a try!
Hi, yes I have heard that Cancer patients also do that. Doesn't it increase your white blood cells.
Saw a utube video beginning of the year, think it was "The Diary of a CEO", probably found when googling something else 😊
Hi Poseypink .. I have good experiences of myofascial relief for muscle pain, and dealing with fascial adhesions ..not all due to FND probably. The OT treatment was all talk, of no particular denomination .. not effective. Next step hypnotherapy. I am finding bodywork practitioners are mostly not welcoming of folks who will shake on their table, or are hypersensitive...and do not always want the extra work involved in looking into FND. Foiled again!!
Hi, I thought of hypnotherapy for my son once but dismissed it because I thought it may bring up past traumas/emotional events (that we weren't conscious of).
Pretty sure I heard something about ice rollers for myofascial relief for muscle pain, will double check.
Found a pubmed article on the Expert Consensus (detailing a lot of medical invention), and this was their conclusion (2021):
CONCLUSION
Patients should be educated about the causes, treatment and prognosis of this type of pain. Patients should be encouraged to actively treat MPD, eliminate the fear of the disease, actively cooperate with medical care and eliminate the trigger points of pain through the above comprehensive treatment as soon as possible. In short, early treatment, good living habits and scientific and standardized exercise are the keys to early recovery of MPS.
Curious about hypnotherapy. Please let us know how it goes if you pursue it!
Totally understand that tremors are scary for practicioners. My myofascial release person will no longer go anywhere near my left leg...haha. Sadly, that's where I need it most!
My myofascial lady is a gem, nothing phases her. I have recently been doing some fascial work on my feet, guided by the excellent videos of Petra Fisher ..some very detailed showing how the muscles move in different positions. and have found that work on the feet triggers jerks and tremors elsewhere in the body, releasing tension ..so worth doing. .. and your feet feel so much better...DIY rules again.
I guess reflexology would help too then.
I'll get it on the list of what to try
I find muscle rollers to be helpful in between myofacsial visits…not so much for the spasms but for the tension/pain that follows. Gonna check out Petra!
ps…finally got the email for GP guidance from ReActive. It’s very comprehensive and I’m sure will come in handy…making my husband read!
Hi, I shared that the other day for you found the original source, probably got lost in convos 😊
Joined a live group session with a Julie Re-Active earlier and managed to find more techniques re migranes at night to try (rocking). Also played back the Re-Centre mindfulness session which was really good.
She asks members to share their weekly win for each of the next 4 weeks and also other challenges to partipate within the Online Community.
Please do not accept your FND diagnosis without a fight 
What was it like leading up to your diagnosis? Did you feel that you were taken seriously?
Experience with Neuro
What to do when your pain is bad
