im looking for any advice on what next i went to see a neurologist last week and he was very abrupt and dismissed of all my symptoms i have been getting progressively worse for the 3 years .he told me there is no help for me and my subconscious is causing all my symptoms he even quoted john stone wrong and said fnd was not a neurological condition. I will ask my doctor for a copy of his letter to see what he tells her.my question is has this happened to others and do just i have to accept it there is no help available.
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Frazzled101
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i had a very similar situation happen to me. I was in the middle of a visit and after just a few minutes the neurologist led me out into the hall. I thought she was going to examine my gate, but once out in the hall she dismissed me and pointed to the checkout receptionist. I was completely floored! Zero help, zero guidance and zero explanation. I was literally shown the door.
Hi, you will find many other FND Sufferers who have posted and said they were treated badly by Neurologists and were given little or no information, others have said they do not believe they have the right diagnosis of FND and nothing is further investigated.
Yes, both of these situations can happen and frequently in the medical profession (in any country!).
You should know that Neurologists although quick to diagnose FND, actively try to avoid getting involved with FND itself. Mainly it affects their patient targets, does not fit neatly into any set type of symptoms, age group or progression pattern, unlike many other Neurological diseases. They are generally poorly trained to handle it - so do not bother even trying!
This in no way means that the symptoms you have are `all in your mind' or symptoms cannot be basically assessed and correctly managed by Neurologists.
You need to find out if the poorly trained Neurologist you have, did in fact rule out other Neurological conditions - especially Multiple Sclerosis, because MS can progress and can take several years of monitoring to decide if symptoms fit the MS diagnosis patterns. Whereas FND is officially classed as non-progressive condition.
You should ask your GP for a Second Opinion from a Specialist Neurologist with training in FND - you are entitled to this free under the NHS. This Specialist Neurologist will then advise the best course of action to lessen or cure your symptoms.
For Example: After my Second Opinion Consult I was advised to undertake the NHS Multi-discipline Inpatient Rehab, which was funded by Primary Trust for my Region. This was many years ago now and at that time Rehab focussed on Cognitive Behavioural Therapy, Neurophysio, Occupational Health etc. They basically had a program of combined therapies which had worked for FND Patients in the past, but were not specifically designed for FND Patients. There was an Outpatient option for some people covering the same therapies.
After the Rehab they expect you to self-manage your condition using the techniques and advice they have taught you and to work on a goal setting system. Neurologists or other Consultants are no longer offered, but certain therapies if available locally are - if you request them through your GP.
It may well be all different these days? Though in the end you have to realise techniques to help self-manage your own FND symptoms is really all the medical system can offer. Dopamine/Dystonia drugs have been unsuccessful, brain electrode impants (like for Severe Parkinsons, OCD, Essential Tremor, Epilepsy or Tourettes ) are not available for FND Sufferers, retraining of the brain can be successful if the FND is diagnosed AND treated within a short period of symptoms onset - approx within 3 months.
thanks very much for all your advice i saw neuro pyso once and he referred me back to neurology i have seen 3 now first said i had bulging disks second fnd and now nothing I will speak to my doctor i really dont want this on my records and realy need help with my mobility. I thought i would at very least get my spine checked.
Sorry to hear of your neurologist visit. The same thing happened to me with the first neurologist I saw - was told it was all anxiety - was shocked what was said to me afterwards - I thought I wait 10 months to have somebody speak with such disrespect - went back to the car and actually cried - the tears turned into strength - I asked that I receive a second opinion of which I did - current neurologist is incredible - was the one that diagnosed the FND and has provided me support beyond belief. My advice is to ask for a second opinion - become an advocate of your health.
yeah i have been so angry a doctor can be so disrespectful towards people and telling me how well educated he is. Great to hear you found a good neurologist
I recommend that you immediately start searching for a replacement neurologist. If I don't care for a physician, I NEVER stick with them. Remember, you are paying the physician for a service, not vice versa (in U.S., at least). Good luck.
Sorry to hear how you were treated. The comments of Brokendeer are very true, we don't fit in any of their criteria. They very much don't want to waste their time on us. What helps me, is thinking how we don't understand the brain. Like ones who stutter can sing beautifully. Those with missing limbs can ease the pain by using a mirror to see that limb. We do need to self manage, only some days are better than others. Social acceptance or understanding not always there even with family and friends. Hope you find what you are looking for. Take care. Moni
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