I’ve just had a second opinion with a neurologist. I didn’t get my list out and just answered the questions. I’m sure I didn’t mention half the things I had written down. But that went down SO well last time (not well in other words) that I just stuck to answering questions. Then couldn’t think of any questions for the dr at the end. She asked me about four times if I was worried about anything. ‘Could I be really worried about something’...was my low mood because of how I’m feeling (as if said) or was my mood causing this. I said I’d interrogated myself so much about that and no, but ultimately how would I really know. I’d said the main issue was fatigue. She told me what I needed was actually more sleep. Probably yes but I really can’t accept that’s causing so many issues, minor though they may be. She is doing more tests but I do feel she is thinking it’s a psychological problem as any symptoms I have aren’t devastating. Or really glaringly obvious. I was a bit defensive at being asked was this low mood first. I tried to explain when you come across this treatment first frequently and aren’t allowed to have a medical issue as you’ve been depressed in the past...
I’m feeling a little downhearted but hoping she follows through on saying she’ll run tests. Sorry had to vent.
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Hi there. I’ve been elsewhere all week having had a rather scary, additional non “F word” diagnosis on Tuesday from a very eminent professor of vascular medicine. Although my own “F overlay” diagnosis has not yet and probably never will be officially redacted - I guess it’s good enough for me that it’s superseded.
Or is it?
I mean if I do have a fatal vascular disease that has been causing these presumed “functional” neuro overlay symptoms for the past 8 years - is it good enough for me or others to say that misdiagnosis happens all the time and just has to be borne - under the mantra we often read here that “doctors are human too”?
No I don’t think it’s acceptable that neurologists are dabbling in specialist fields that they aren’t trained in and I think the potential for doing harm by diagnosing FND is immense. To me the inherent risks and harm caused by neurologists researching and diagnosing patients with FND FAR outways their own accounts of helpful a diagnosis or the accounts of of how helpful it has been to a small minority here.
Have you tried putting your fatigue, low mood and other neuro symptoms into a different specialism such as cardiovascular medicine or rheumatology and seeing if they square? All autoimmune rheumatic diseases come in Seronegative form meaning they don’t show in blood work. Then there’s dysautonomia, EDS, Psoriatic Arthritis and many more besides which don’t usually show in blood work or brain imaging or even lumbar puncture.
Sorry if you’ve already been through this other testing in search of answers. But if not - I would question whether being bounced between neurology and psychology is ever going to yield real answers for you. If you feel it’s wrong for you then it most probably is. So the search must go on because resigning yourself to not continuing to look for a true diagnosis will only eat your spirit more and more otherwise.
Meanwhile here’s a link which you may find helpful - even if it’s taking fatigue out of the neurological context and placing it in a rheumatology one. info.sjogrens.org/conquerin...
in reply to
Did you get a vEDS diagnosis? After seeing a rheumatologist instead of a neurologist I'm finally being taken seriously as having either Lyme or some form of EDS.. he thinks most likely is classical EDS. genetic tests being sent off soon. Good information and well articulated as always twitchy!
Ps what I’m saying is that, in my experience, the whole premise of FND is unethical. Living with uncertainty and the increasing feeling that many doctors aren’t trustworthy or may even occasionally have malign intent, causes very low mood.
My mood is low now, not because I have a really nasty collection of autoimmune diseases, but because I feel that this cult so-called condition has enabled my doctors to hide behind it when they should and would have otherwise monitored the potentially fatal condition I do have! If I’m told, following tests, that this overlapping disease will probably only give me ten years at most - this in itself won’t be as disturbing as being told I had FND overlay has been. Basically I like certainty and a rudimentary time frame - even if it’s not a particularly good one to have. Uncertainty and ambiguity of “functional” have caused me so much psychological and physical distress and it’s just not good enough to blame the doctors on the ground for buying it or allowing themselves to be distracted by it.
Nor is it good enough for some people here to tell dissenters that we do them and this community harm by voicing our dissent. All these people are saying is that the collateral damage ie me and probably you, are a price worth taking? Well thanks “FND Hope” for your complicity!
Ultimately the buck stops with those who seek to reinvent Freud’s conversion disorder theories as a bogus premise, over and over again.
Oh twitchytoes that doesn’t sound great I’m so sorry. I hope you continue to get answers, hopefully ones that can be dealt with? My thoughts are with you.
The dr did say she’d scan me. I hope she sticks to her word. I think I did have rheumatology-type blood tests previously (ana?) which was negative but I guess if nothing comes of this I can talk to the gp again. She said I was too old for ms and my symptoms were so subtle - probably fixable with some decent sleep. I’ll give it a go... when she asked me for the fourth time if I was worried about anything I really wanted to respond with ‘of course’ because I am. I’m human and I have worries. Of my own and for this world. But converting that? I mean I can’t say no for sure but I am trying to believe in myself. It’s so hard sometimes though.
I hope you feel ok today twitchytoes, thank you for taking the time to reply.
Just stick to saying over and over “everything is organic - and to try and tell me it’s not is something that should be keeping you awake all night with anxiety doctor - not me!”
I don’t sleep well - never have. However I’m blaming the inherent insomnia I have always suffer from my seronegative Sjögren’s and on my related, useless lymphatic system. And the rare condition I’ve now had confirmed is called Limited Cutaneous Systemic Sclerosis - which can cause Lymphodema as part of pulmonary arterial hypertension.
Yes Lymphodema can cause neuro symptoms and doesn’t show up visibly in the earlier stages. I bet your neurologist hasn’t the first clue about any of this?! Mine has had to learn a tiny bit the hard way through me and I’ve dumped her now. I can’t have a doctor that breaks the body and mind apart into organic and “functional” - it’s just not acceptable in this day and age.
I mean that these neurologists still studied basic models in vascular medicine as part of their first medical degree one hopes? So to turn a blind eye to it as many do - is showing Doctor God Syndrome (DGS) in my book.
My advice would be to get copies of all your blood test results from the past few years and all clinical letters, read and learn from them. If the receptionist charges you for this then it’s money well spent to self educate and gain control. Up to 30% of rheumatic autoimmune diseases are seronegative and can only be confirmed symptomatically. You need to learn your own baseline normal for stuff like full thyroid bloods panel, body temp, antibodies and inflammation levels and learn to match your symptoms with your blood work.
Yes your neurologist is hopefully trained to exclude MS. But not to exclude Lupus or Sjogrens or Vasculitis. Even Rheumatologists very often misdiagnose these as ME or Fibromyalgia.
It’s all about basic empowerment and you can use the patient experts on other HealthUnlocked communities for guidance. Do not take any doctor’s word on anything - always check your symptoms against your signs. Sleep is vital but many non psychological problems, some structural, some systemic/ vascular, some neurological, can cause sleep to be very disrupted. Only by finding the underlying cause of your poor quality sleep are you likely to get better quality sleep in my experience! Best of luck. X
I can tell you the cause of my poor quality sleep! One of our children still co-sleeps. And she loves to cuddle with all her knees and elbows! It was because I said I go to sleep ‘by midnight’ as a rule. It’s sometimes nine sometimes 12, usually in between and I definitely need to be more disciplined. Sleep is important - but causing all this...? She told me to get my husband to look after the children for the day. Poor man has to do SO much every evening and at the weekend if I’m exhausted and finding basic chores my max. He is very involved and supportive. I hate feeling like this! Like a ninety year old sometimes.
Well you’re in a very large, elite club and so you must never feel alone with fatigue - whether due to inflammation, domestic drudgery and co-sleepers. My eldest and youngest were both the same. Neurologists suffer sleep problems too presumably so perhaps yours was just projecting?
I only got diagnosed with hypothyroidism 17 years ago and I’m 56 now. But by then I’d had all sorts of autoimmune problems - diagnosed and undiagnosed. Only I had no idea that they were autoimmune back then - it was only when my symptoms presented as, and were diagnosed as RA in 2011 - that I became aware of this. Having GPs who didn’t believe in “functional” for me and who had always had me down as autoimmune really helped get me referred to the right specialists.
It was only when I requested/ insisted neurology input 4 years ago that everything went wrong. Then I relocated and lost the friendly family GPs and acquired Jon Stone’s label that all started going wrong. Plus being in Scotland with complex rarity has not been good and the consequent lack of joined up care has paved the way for this nonsense of whispers and catalogue of misdiagnoses.
I tell you all this not because the same kind of story might apply to you too. But just be wary - keep your letters and test results and never let any doctor get away with fobbing you off. You’ll know when the diagnosis feels right and when you meet the right doctor who chooses to believe their patients from the outset.
Until then do all you can to get your sleep habits on track and stay strong! X
Thank you. I’m trying to stay strong in so many regards!
I read today that in a large analysis people with ms visited the dr x many more times in the five years before dx (sorry can’t remember exact numbers) than people not dx, leading to the belief that the condition has a prodrome phase. I imagine this could well be true for so many things from hearing people’s experiences here. The neuro today said ‘well the gp thinks ms but you’re too old’...it’s untruths like that that challenge my trust. (I have to say when she told me my age when I first got in I thought ‘WHAT!😱🧐surely not🤯’ Still feel like a teen inside🤣!! Now maybe THAT’S the problem???)
I worked in the care profession for many years and one of my clients worked on a farm until she was 80 and went on to get an ms diagnosis.
Now she may of had it for many years without realising and putting issues down to tiredness. None the less she was 81 when diagnosed. My advice is to listen to what your body is telling you and above all believe in yourself.
From a personal perspective I think we would know deep down if our health issues were phycological/conversion disorder.
I had a new symptom appear in June which means working and driving no longer possible I went back to neurologist who just kept saying well it’s stressful changing jobs so just see if you can postpone the start till this new symptom passes he basically said in a nutshell the new job stressed you out and you will get over it. I have been told stress is the issue so many times I can’t lie being a vet nurse is a stressful job but it also brings me joy and pleasure in my work I love my job and was very excited about starting my new one and my colleagues and management were all very supportive and trying to help find ways I could still safely work but going from I walk a bit odd to wow head feels like I’ve had 10pints isn’t safe.
Anyway sorry I have found a good gp who will happily refer me to or try to refer me to who I ask bless him not once has he made me feel like the neurologists have that I’m wasting their time and it’s all in my head funnily enough the cognitive behaviour team did a phone consult with me and said that their services will not help me and I don’t need them.
Right so I’ve recently been to a Medical Herbalist she’s great she’s given me herbal remedies to help improve my symptoms and they are slowly working the best one is the sleep tonic as I get a couple of hours then nerve pain wakes me up and it’s game over this sleep tonic I can go back to sleep now I agree a good nights sleep will help but it can’t purely be the cause. This is who I’ve gone to she is fab and it’s definitely helping me. physichealth.uk
It’s good you’re finding some help from somewhere. And a good gp. That’s invaluable.
Talking over the appointment with my husband it seemed more obvious she thinks I’m fine. And I don’t disagree - I look fine from the outside. On top of asking me several times was I worried about something she also asked me more than once whether I’d had an accident or back injury of some sort. To the point where I was thinking 🤔 Am I not remembering?? There were quite a few things I said to my husband that he said ‘why didn’t you tell them that?’. For instance pain-wise, I seldom take anything because it doesn’t really work and the gp won’t prescribe anything stronger (you’re seen as a drug seeker, and evidence is showing it’s not always helpful so I try and find other ways), which from what she said later led her to believe pain isn’t really an issue. I know I’m very guarded now after my previous experiences. This doesn’t make it easier in the long run though. For anyone. I can’t go into an appointment like it’s the first time, emotion free, just as she wasn’t looking at me without the previous drs opinion within her view.
I’m left today, again, thinking I just need to get on with it, ignore how I’m feeling, forget it and I’ll be fine. But I’ve been there before and were things not such an issue I’d very happily do that. The last thing I want is to be sucked in to the dr vortex for no bleeping reason.
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