Experience with Neuro

[Silver_Flower]

Hi. This is my first post in the forum. I’ve seen by a neurologist for the first time a few weeks ago. I saw the letter the neuro sent to my GP last week and it says that there is some embellishment in my symptoms. I was very upset and feel insulted. Basically the neuro is saying that some of my symptoms are made up as all of my MRIs came back normal ... I don’t know what to do about it, but it’s frustrating and very sad that I was not believed. Has any had similar experience?

[crystallinecanine]

Yup, same has happened to me a couple times. I went to get an MRI scan done and they were normal. You know where they recommended me to? A therapist. -_- I have seen a few neurologists and they don't know what to make of my symptoms (leg buckling and myoclonus) so they kept sending me to physical therapy and a different neurologist. But yes, it does hurt when your symptoms are being invalidated because YOU'RE the one experiencing them, not the doctors; no disrespect to them though.

I do hope that you get the help you need. ^_^

[Silver_Flower in reply to crystallinecanine]

Thanks for the reply 😀 It’s good to know that I’m not alone.

[BELAwesome in reply to crystallinecanine]

I get the same symptoms as you! I had a sleep deprived EEG which didn’t find anything and MRI but I was referred to an epilepsy specialist just in case. Next month I’ll have an ambulatory video EEG for a few days. Basically getting set up and can move around/be at home with it.

[Katherinedeane]

Deepest sympathies. This is not fair or acceptable. You need to speak to your GP and ask for a referral to a neurologist with expertise in FND. Also I always ask that I am copied in to all correspondence from consultants - I tend to find they forget who is reading the letter - it can be quite enlightening - if frustrating. Many hugs - I hope you get to see someone who has a clue soon.

[Silver_Flower in reply to Katherinedeane]

Thanks for your kind words. I’m thinking to ring my GP tomorrow and ask her what the neurologist really means. I just need a neurologist who is willing to work on my symptoms along side with me and help me get through it.... thanks for your hugs. I feel a bit better now😀

[Sem2011 in reply to Silver_Flower]

I had same experience. Neurologists often are experienced in operating and repairing TBI/ABI, tumours, but if you have a normal MRI scan, and a positive Hoover sign, a neurological examination they perform , I was offered 'talking therapy' as neurologist thought my cognitive problems were due to TBI, but my left sided weakness and spascity was due to FND. I disagreed as I had visited a very competent and experienced neurolopsychologist for four years, and Spent a great deal of time talking in those consultations. Neuropsychologist have a greater understanding of how wiring, and determined deficits of the brain, by neurosycometric testing(I cannot remember correct spelling). Professor Edwards at St George's , London is FND specialist, personally I felt vilified by my neuropsychologist. Good luck. Yep it sucks, I have read letters and by law now they have to send copy to patients but they either forget or too arrogant to admit they do not know, so blame it on psychological stressors.

[Silver_Flower in reply to Sem2011]

Thanks Sem2011 for the advice 😀

[Katherinedeane in reply to Silver_Flower]

I agree getting someone who is willing to work with you is essential - the medics can do great harm - they don't mean to but their dismissals do great harm - find someone who has a positive effect on you. Many hugs.

I can also recommend Prof Edwards at Queen's Square, London.

[Tewa in reply to Silver_Flower]

Same experience over the course of the past nine years...although I have positive test results with many tests and also some not positive.. Sem2011 is correct...vilified is an accurate word to describe how we are all treated by neuros. The filter though which we are viewed, then supported with each encounter makes it nearly impossible to get help. The drs can and do write in the slanted reports anything they want...because they either do not know or are not willing to continue to seek answers or testing. It is no longer the 'practice of medicine,' instead it is the business of making money with the pharmaceutical companies. And we are the ones who suffer.

[cshubert]

I'm in the same boat of frustration! I went to my follow up appointment with my neurologist just last week and told her that my psycoloagist (who I've been seeing for a year!) said that she does NOT feel my symptoms are psycosamatic. The neuro basically got irritated and defensive as if I was challenging her. I wasn't challenging her...my question was simply if I've been getting better emotionally (which I have) and my physical symptoms are getting worse (which they are!), then how can the basis of my condition be psycosamatic? And if that's the case, what am I supposed to do now??? She offered no explanation, no solutions, no tests, just follow up in 4 months. And then she contacted my psycoloagist, which *I* recommend, and when my psycoloagist confirmed her assessment, the neurologist basically told my therapist that she needed to "get on board" with her diagnosis! I felt completely invalidated and dehumanized!

I realize I'm not a doctor...but I went to see her seeking answers...even if the answer is therapy. I've complied with that and accepted her diagnosis at first, but now I'm not so sure. My symptoms don't fit solidly within any one category, hence the FND diagnosis, but the irony is that my symptoms don't fit the full bill for FND either! But the neurologist has obviously made up her mind and just isn't listening to or doesn't believe my report, even with my husband of 18 years there to confirm!

I have familial essential tremor as well as a strong family history of Parkinson's going back 4 generations on my mother's side. But she has completely dismissed the idea of young onset Parkinson's (I'm 38, symptoms started at 30), despite two strong indicators of genetic predisposition. My neurologist said on my very first visit that she wanted to monitor my MRIs yearly because of these strong indicators. She even said that IF I had Young Onset Parkinson's, we wouldn't expect to see any damage on the MRI yet. But when I brought this up last week and said that I'm concerned about the possibility of missing progressive damage that could potentially be either halted or slowed down, she completely brushed me off.

I'm so overwhelmed and frustrated! I feel like I'm ready to just give up on MDs all together! It's like they'd rather keep their pride in tact than to listen fully to the patient and keep an open mind and say "I'm not sure what this is". I just don't know what to do!! 😥

[BuntyP in reply to cshubert]

Refuse to see her again and insist on a specialist in FND and Parkinson's. Even if you make it to 100, your life is too short to waste any of it with someone who sends you to another specialist and then ignores their advice.

[Lima-B]

I had the same but not from the doctors but from acquaintances and even some friends. I also felt insulted.

[Tewa in reply to Lima-B]

Same here...from friends who gossiped about me...saying 'there is nothing wrong. " no longer friends.

[Silver_Flower]

I talked to my GP about the neuro today. Thankfully my GP agrees my symptoms are real and she is going to find a neuro who is specialized in FND. My GP and the neurosurgeon understand my difficulties without any stigma, but why a neurologist has a predefined negative conception about a patient who has functional problems??? My GP told me to forget about the neuro, but it still hurts me so badly..... I don’t know if I can even recover from the experience....

[Tewa in reply to Silver_Flower]

Good you have such a supportive GP. I am still seeking one.