Hi has anyone seriously looked into a different diagnosis?
This may well have been covered before and I am probably not alone when I say I have come to the end of my tether with being told by doctors and consultants over the years that fnd and fibro are not a real illness but a psychiatric problem
My latest was with the bone doctor because I am desperate for a new hip I bite my lip and said nothing when he told me basicly that FND is a fictitious disorder diagnosed because they either haven't got a clue what's wrong or we have wild imagination.
I would be eternally greatful for a point in the direction of what any has found in regaurds an alternative diagnosis.
Since you are in the UK you could take this up with Prof Jon Stone since I expect your experiences are familiar to him and he is keen to change how FND is conceptualised within the medical profession. Because FND is not a dx of exclusion (and is now considered to be a diagnosis of inclusion) there may be concern amongst some health care professionals (and patients) that it is being over diagnosed and that other conditions are being missed in the process. But a clear rationale for the FND diagnosis is thought to have therapeutic benefit so if your current clinicians are in denial about it, their approach may not help your recovery.
Regarding Fibro/small fibre neuropathy - you might find the you tube videos by Annie Oaklander of interest.
That’s my theory about FND. While new to the scene, it does seem overused to me especially considering research papers pointing to evidence showing people with neurological disorders had FND at the time they were diagnosed with the neurological disorder. Also, research papers discuss it can take years to get a correct diagnosis and often people start with a misdiagnosis. Not saying this is the case for all but just my thoughts on reading posts and information related to FND.
I understand where you're at and know all too well the frustration of dealing with doctors and consultants. I found giving them a copy of 'A practical review of FND for the general physician' (link below) can help - if they're prepared to read it - to get us all on the same page to have some semblance of a decent discussion about my health issues. Jon Stone is a co-author.
I am still looking for a different/new diagnosis. I can see where some aspects of symptoms can be FND but others/most of symptoms I don’t think are FND for a few reasons. Unfortunately I have to wait until the end of August to see a new movement neurologist to find out more.
I will start with I am not a doctor or specialist so this is just my findings. I am not set in stone several issues are not FND, things just don't seem like they fit however other aspects could be.
I have movement issues. Challenges with going from sitting to standing at times and issues with moving around due to tightness/stiffness of muscles which also affect my arms. I also have tremors in my hand/jaw when not in use and involuntary arm movements that get intense among others.
I have had a number of issues and one was pain in my feet. In December, I went to urgent care because I couldn't walk and they prescribed methocarbamol. We discovered it suppressed my involuntary movements and tremors substantially which we were not expecting. Taking low dose 3 times per day makes the tremors and involuntary movements occur on occasions and in a way mutes them compared to how they were before. If I forget to or don't take 1 dose several days in a row, I get a lot of involuntary movements in my arms in between pills.
The movement disorder neurologist said she doesn't understand why this is occurring. From doing some research, Methocarbamol seems to work by suppressing signals from the nerves to the brain while FND is an issue with how the brain sends signals and maybe interprets them. I was sick with severe breathing problems the prior year and earlier last year for over a year but never had anxiety, depression, or stress other than the stress on my body from breathing problems. I do have congnative, memory, balance, and other issues that have been slowly showing and perhaps slowly getting worse.
I have had doctors, audiologist, and others ask about PD which the movement disorder neurologist said it isn't PD. Doing legitimate research on PD, early onset stage 1 differs from late onset stage 1 particularly around it being slower to develop, more problems with tightness/stiffness much earlier, and some other parts. There was a research paper published in 2012, I think, that discussed how doctors dismiss early onset due to age and it can take on average an additional 15 months for a diagnosis. Writing down my symptoms over the last year, the symptoms does seem to match early onset stage 1 but there are also a number of other things that mimic PD. We also don't know anyone with early onset let alone late onset. The question is what mimics early onset. We are going to see a neurimmunologist to see if my issues my be due to autoimmune which also mimics PD. We are also going to a different movement neurologist but that appointment isn't until late August.
I do not take phone data as gospel so to speak but do use it as a guide and overall idea to show doctors and let the experts dismiss or not since it is not medical grade. Primary care thought it was interesting. My current movement neurologist said she was confused and things didn't make sense to her. She did in our third appointment see some of the movement/balance issues, which is what she was referring to in addition to what my phone data was showing. We found the data from my watch and phone show a slow reduction in movement, stability, and speed when comparing 2 six month periods and so far, even though it has not been another six months, shows a slowed decrease after the 2nd six months. It also shows a potential for a fall increasing over the next 12 months. I can see some things being FND but from what I have been Able to find in research papers, universities, and other organizations what I call my core symptoms just don't seem to match FND. No triggers or things suddenly getting worse. It looks and feels like a slow progression. There was also another research paper that discussed some with PD have FND before being diagnosed with PD. There is just too much no one knows about neurological disorders in general and too much for doctors to keep up with.
Hi, I’m the same as you n lots of others on here , left on the shelf to cope with a life of pain n not being able to live a day without fatigue n some sort of walking problem , weakness in arms , feeling like there is something in throat when I swallow etc , can’t leave house cus of fatigue n can’t walk far , anyway I wanted a second opinion n am lucky enough to be able to go private 🙄, didn’t want to but sick of waiting on nhs to send appointments , I will update u all on any answers n progress I get 👍
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