Is it really FND

[Loveskunks]

From what I've read and been told FND is not progressive and symptoms may go away. Well it's been 5 years and there's been no respite and I have gotten slowly worst. Is this possible or should I look into it being something eles?

[MONIREN]

I don't like when they say it's not progressive, I started in 2017, finally got diagnosed in 2019. I'm not as bad as most, but do find the me I used to be slipping away. So many young ones now in wheelchairs and with migraines. Don't know if they will ever find out why? Take care.

[Fnd_kiwi in reply to MONIREN]

My neurologist in hospital told me daily “ be thankful it is a progressive disease like m s “ I guess they mean it isn’t causing brain damage/ dymylination or damaging your organs or joints . I pointed out to the doctor that it was as disabling, if not more than ms for many living with it

[SNOW10 in reply to Fnd_kiwi]

Yeah, what ever doctor says that need an awareness lesson for sure. Because daily we have to train our brains & bodies. I disagree wholeheartedly with that doctors statement and is misleading. Until that doctor try to understand or experience FND him or herself they can shut up.

[Mic67 in reply to Fnd_kiwi]

There are also a variety of different drugs to treat MS, whereas we have nothing..

[Keeponfighting in reply to Fnd_kiwi]

You know that I was in a such terrible state with FND that I once said to the doctor that I wish it was MS cause at least this terrible symptoms could have an end. Doctors have no idea how terrible these symptoms can be

[kev60]

hi I have only had this a short while(2018), effects walking, talking and thinking plus memory problems. my walking improved with a neurophysio trial but had to stop before the end due to covid. but has now remained constant about 60% of normal so i walk into things mainly walls(lol). I find my memory is a cause for concern I forget quite a bit or remember things but a week later(not helpful) , but cannot seem to get any help with this. I would listen to your body and if you feel it is something else get it checked, i myself have COPD,GORD and Artheritis of the spine and there is a lot of crossover symptoms. my next port of call is PPSS persistent physical symptom service at the Maudsley in London, this deals with symptoms that cannot be medically explained and uses a multi-disapline approach (physio ,psyhiatric and neurology). hopefully this will give me some answers the GP also suspects Long Covid as I suffer with a lot of pain but they do not know why yet. you just have to try and get as much info as possible and get the doctors to refer you to wherever you need to go. good luck for the future. kevin

[Brokendeer in reply to kev60]

Hi Kev60, just as a heads up... I did a full Inpatient FND Multi-Disciplinary Therapies course years back in London Neuro Hospital.

My experience:

1) The Therapists like to explain what they think your problems are (not what other doctors or indeed what you think they are!).

2) The Therapists are obsessed with you not focusing on your symptoms or other possible diagnosis.

3) The Therapists remit is to work on your life goals with a view of helping you achieve them through your self-management daily techniques.

4) The Therapists may offer medications or follow- up therapies, but know there are many types, not all work for everyone and you have the choice whether to try them or not and for how ever long suits you. There is no quick fix, no cure or `One Therapy Fits All'.

5) The Therapists avoid proper answers - they tend to steer clear of committing to what you have, how you got it, why you have those complex symptoms and how symptoms might progress in the future - even after the therapies!

So if I were you, try to put something down on paper as your main goals or what you really want to get out of these support therapy sessions to improve your symptoms/ life - before you go there!

Good luck,

Look for the calm in the Storm!

[lorettapalmer]

Don’t think that you are alone. I have had this horrible disorder now for 10 years and have learnt to just get on with what happens. I lost the feeling in both legs over night and it went up to my chin with the lose of feeling being in most of my body now.I have also been through the multi funcation program and had councilling, neuro phiso etc etc. Got it a bit better but I’ve not been able to walk long distances since it all happened as the pain in my back is always there.I’ve thought the same as you, is it something else? And have slowly been disgosned with different things, like sleep apnea last month.

I find that my legs are worse when I’m more tired, but the feeling has stayed the same and so I’ve learnt that if anything new happens - I go and see my GP who is very good at listening and checking different things out.

Hope this helps, and if it helps we private message me and we can keep in touch - helps to know that you are not Alone xxx

[whirlygirl16]

Hi I'm feeling the same as you to whether it is FND as I'm getting slowly worst not better

[Clarabella47]

When Iv looked it up it said it is progressive. X

[Mic67 in reply to Clarabella47]

What the 'experts' say is that around a third get better, a third stay the same and the rest get worse.

[Brokendeer]

Hi I still have my Motor FND after 13 yrs and it is an unusual condition to self-manage.

Everyone with FND tends to have sometimes wildly different symptoms; but the same diagnosis and of course are all different ages. Some changes do happen over time with FND, but then again natural aging changes also happen to us all regardless of FND.

My personal opinion is that the doctors stating FND is not progressive - are comparing FND symptoms with other Neurological diseases like Parkinson's or Multiple Sclerosis? Where by FND is classed as not terminal or life shortening.

However, if you compare FND sufferers to Non-FND people - then there is a whole heap of degenerative and life affecting symptoms (caused by complex dysfunction of bodily systems) which will only get worse as the body ages and everything becomes less naturally efficient.

That said, just because you have a diagnosis of FND, it does not mean you can ONLY have one diagnosis to cover all your symptoms. FND can co-exist with other conditions in the Neurological field and indeed other generalised conditions.

Depending on how distressed you are that there maybe some other issues going on, where you cannot settle or move on with your life until you have explored all avenues; then look for more constructive medical answers -just do not expect answers to come easily or quickly that would be my advice.

Look for the calm in the Storm!

[SNOW10]

I hate someone told you such false hope. I say it depends, have you always felt different your entire life even as a child, have you had any symptoms that were warnings signs before your diagnosis as a child til now, have you had a chance for them to run every necessary test you deem necessary and doctors before accepting the diagnosis, do any family members have any similar symptoms or diagnosis/or similar and I would say take time to think about things as a whole to determine if you feel like your doctor gave you the correct diagnosis???

[MONIREN]

It's a bit like, what comes first, the chicken or the egg. Stress that causes symptoms, or stress because of the symptoms. One neurologist said I had the symptoms because of my depression, I went off my antidepressants, that was 2018.

[SNOW10 in reply to MONIREN]

Just to be honest, these doctors are just guessing what they think the cause is they don't know for sure. From looking at family history and factors around me I believe is part of caused for me. I had my first seizure as a child so to blame it mainly on trauma I disagree because my traumas happened after seizure incident so for them to think it's the main cause I dont agree for me. I dont remember any trauma before I was in elementary at the time of that seziure. I had my first few indications as a child but nobody pay attention to them because tremor was slight or didnt deem a huge issue because I was still fuctioning like others and still had some signs that I was aware of but didnt know at the time what it meant for me. Once all the symptoms started happening all at once where each human that saw me could now tell life become extremely more difficult. I would say hereditary factors,trauma, and other environmental factors play a part as a whole from what I have researched on my own behalf so far. Stress, lack of sleep,heat, rain, cold, ect make symptoms worse for my body and brain to connect properly, so training for my mind & body is daily. There is a huge list of symptoms and things that affect me but dont feel like typing them all.

Send comfort & hugs &understanding from ones around you while your going through your stages.

[MONIREN in reply to SNOW10]

I do try not to focus on my symptoms, my gp says every so often, more tests? I'm tired of chasing butterflies. I have grandchildren that I adore, they accommodate my symptoms, 5 yr old tells me to hold her hand because I'm wonky. Younger 2 allow me to sit and read books or blow bubbles. I also try to do what I can to help others, cook meals or bake, even though it's hard, I'm going to keep going, one slow shuffle after another. I'm so much better off than others. Thank you for your kind words. Take care.

[SNOW10 in reply to MONIREN]

That is amazing. Continue to do what makes you happy & calm to the best of your body allows it's a must for us FNDers. Children are indeed a blessing when they try to understand & help ❤

[dovedovedove]

Hi! In my experience, FND can be progressive: mine started out in my lower body and now has spread all the way up to my face over a course of ~3 years. I was told this, too, and it definitely made getting diagnosed harder.

I also have a vitamin B12 deficiency as a comorbidity and was wondering if they'd ever checked your levels? They never thought to check mine, especially with how young I was, and I'm wondering if you're in the same boat.

[SNOW10 in reply to dovedovedove]

Thank you for advice. I will look into my blood work and see if they check my B12. Cause I'm young too so biase happen alot.

[Nansea]

I was diagnosed with FND 3/20, after seeing a few different neurologists, just saw special neurophysiologist who specializes in vestibular issues, still trying to check other things off my list. Once again, could not put all the pieces together. That was neurologist no. 7. I saw him because of the sensory issues. I told him I was previously diagnosed with FN D, he said he was not a big believer in that diagnosis, but again had no answers for me. The last couple of years have been difficult, I feel so bad for the rest of you who have been dealing with this for many years. As far as being progressive, I do have numbness in my back, along with burning pain at times in a couple of different areas of my back that comes and goes, which I did not have the previous year, also, lose my balance at times, just seem to fall over at times. Is anybody else experiencing this. Also my vision seems to get blurry at times. Possibly r/t migraines ? I’m not sure.

[poppymom23]

Mine has definitely gotten worse since I 1st started having symptoms. I was initially diagnosed w/ MS for 12 years, but changed to FND 2 years ago. My disease has been very progressive for a long time. I have been in a wheelchair for the last 10 years. Since I started treatment for FND, everything has gotten much worse. My flare-ups have gone from every 3 months to every 3 weeks. I haven’t been able to move my legs in 7 months. My therapist said she is confident I will eventually be cured from having flare-ups, but it will probably take a few years.

[Jofachiz1]

Channelopathies are rare disorders that many doctors are unaware of that cause fluctuating symptoms. They do not show up on brain MRI or blood tests. One example is episodic ataxia. Research it. Many are misdiagnosed with FND. With correct diagnosis and treatment, you can live an almost normal life compared to the severe disability of remaining undiagnosed.