Hello,
After a diagnosis of FND this week I was wondering if anyone can help me answer the following questions:
1) Does FND symptoms get worse over time?
2) I work in dentistry and was curious if the constant use of vibrating instruments at high frequencies could make it worse?
3) How have symptoms presented in pregnancy?
Thank you for helping me address my concerns.
Xx
I can only speak from personal experience but my symptoms worsened considerably, but then plateaued. Now they tend to fluctuate depending on situations and how much rest I have had. I am not sure whether vibrations could worsen but I would imagine they could depending on your symptoms. As the symptoms vary so much from person to person, There would not be any clear-cut answer.I have been considering getting a vibration plate to build my strength but part of my symptoms are sensory overstimulation to light, noise especially and touch which is why I have hesitated. I do not know how symptoms are affected by pregnancy. I hope this helps a little though XX
Please do not imagine the worst. FND is a -potentially- totally reversible condition. I have it on the highest authority in the matter, that of dr Jon Snow from Edinburgh Western General. Also, my father had it, before it had a name that is, my sister has it. My father went up and down but in those days there was zero understanding or tolerance for something that did not show up on the xrays or any other tests. Now my sister is a complex case because there is also an organic illness, actually more than one, and an addiction to prescription drugs and earlier some to alcohol. She was not diagnosed with FND but I now know she has it because my daughter has recently got the official diagnosis after developing very similar symptoms. With my daughter, it started with a hemiplegic migraine. After a terrifying several months, she is getting back to normal. All this does not answer you question about dentist drills but I hope does the general one about symptoms getting worse over time. You have some say in this!
Best wishes and warmest thougts.
Mine has got a little worse over time but it does fluctuate and sometimes it settles down bit. I have low serotonin and go through the menopause as well and it seems to be linked to that for me. I can be very noise sensitive. No idea about the pregnancy question sorry.
hello - I have never posted before, although I have often come on to read up on symptoms, other peoples experiences etc, but your post just made me want to reply. My very first FND symptom was suddenly being unable to use the drill at work (im a podiatrist) It simply started one morning, I woke up with painful hands, and as the day progressed the pain went into all of my major joints. I thought I would be ok to just get through the day, but then the vibration of the drill suddenly became unbearable, and my hand actually wouldn't stay gripped on the drill whilst it was on. My joint and bone pain has since been found out to have an organic cause, however, the neurologist diagnosed FND as being directly caused by the pain I was in, and my symptoms do get worse if im going through a period of increased pain/fatigue etc from my other conditions. I have continued to struggle with any vibration, such as hairdryers, shavers etc and am currently unable to work as a podiatrist (can't use drill and nobody fancies having my shaking hands anywhere near their feet when im holding a scalpel haha) The FND also causes me to have full body tremors, periods of severe gait problems, speech problems and loss of function in my hands. As regards to progression, I have been assured that it tends to reach an end point in symptoms, and that it doesn't continue to deteriorate, unlike things such as MS, MD etc, nor does it actually cause damage to the body, unlike the other organic conditions I have that seemed to have caused the FND in the first place! I think you should consider talking to your workplace, as they have to work around you if you become unable to carry on with some aspects of your job due to a medical reason - and FND is a medical reason, regardless of it being non organic and non deteriorating. I hope you find a solution, I am honestly thinking about you xx
Thank you so much for taking the time to reply. It is very much appreciated.
I use high speed and ultrasonic equipment on patients for at least 6hours a day therefore it is unfortunate I am able to change to my job role. Thankfully the only symptom I've had when seeing a patient is stuttered speech. It is a huge concern of mine being self employed and the main provider for the home. I am trying my hardest not to fret about this and realise I can only do what I can.
I am waiting to see a immunologist next week to see if I have anything else combined with FND.
My symptoms have been consistent with a different one every day for the past 10 days. In my previous episodes I recovered within a few days but this one has been the most debilitating. Today my cheek and eye swelled up one side and I had tingling all over my face and hands. My other major symptoms I have had are speech difficulties, facial drooping, arm and hand weakness and swelling, leg weakness, confusion and chest pain.
I am finding it hard to believe how under researched it is. And even though the neurologist said it is the 4th most diagnosed neurological disorder, out of the 1000s of patients I have treated I have never come across it. I will be putting my name forward for any research or awareness campaign possible.
Thank you for being there for support X
Hi
It was during my 3rd pregnancy that I developed fnd, my previous 2 were unremarkable and I was very healthy. Severe morning sickness then a virus on top of this seemed to trigger my symptoms and I was very unwell for the whole pregnancy but after I had my daughter things improved. I am now back at work although I still have symptoms that fluctuates daily. I have had this for 2 and a half years now and have improved a lot but it has not gone away.
Best wishes to you x
Thank you for sharing. We had just decided to start trying for a baby at the beginning of the year till my symptoms started in February this year. Hence the pregnancy question. I hope to have the confidence to decide to try again sometime in the near future. X
gosh, you really don't need such symptoms, being self employed. I am fortunate that, owning the clinic I work at, my husband has been able to take over my patients - otherwise I would have been at serious risk of losing the clients and my business. The stuttering speech is embarrassing, and I always feel like i have to justify it when it happens to me - its almost like I've had a stroke as my face also droops. In fact I was sent to hope hospital earlier this year as they thought it was a stroke, but I knew it would end up being part of my functional issues haha. You really need to press the doctors and the specialists - this is your career on the line, and you will be concerned about your patients safety too - and they can't leave you with the whole 'wait and see' approach that I seem to be getting. In fact, my neurologist basically wiped his hands of me as soon as FND was diagnosed. And like you, of the 1000's of people I have treated over the years, and during three years of NHS/university training, this condition had never come up before....it sadly shows what a lot of health care providers think of it. Keep on fighting, and well done you for continuing to work whilst battling the condition - its something I so far haven't managed, and you deserve real credit for it in my eyes xx
It is amazing how under researched it is and my neurologist also said how common it is yet I (nor anyone else I know) has ever heard of it.
I'm sorry to hear you're going through this. Do try not to panic about work too much - you can only do what you can do and you will get through it somehow.
I often get tingling/numbness/pain. My main symptom is the fatigue and speech issues. Unfortunately I'm still off work as my job requires me to talk and stand which I just can't do at the moment.
Will be interested to hear what the immunologist has to say. Best wishes x
Thank you for your supportive response.
I hope you feel better soon. Wishing you a speedy recovery x
I'm waiting for a few referrals but other than that I'm not sure what there is.
I wonder if my 2nd pregnancy (4 years ago) triggered symptoms - it's hard to say now but I experienced what was then described as pelvic girdle pain. Since then I had arm/hand weakness and had physio. This year I've been tired probably due to overworking but it wasn't until July I collapsed with seizures. It all got worse from then although I am doing better now than 3 months ago. Living in hope 
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