So, I have a neuro appointment today. No idea who requested it nor what it’s for but I’m going anyway as I’m not getting anywhere after 6 mths and who knows I may actually get a Dr that will listen to all of my symptoms.
Thus, a cunning plan has been devised:
I’m going to throw them off the migraine scent that they seem so obsessed with and start from my tingling, burning toes and work upward!
And... I’m going au naturel. May even not do my hair.
Mwhahahhaah!
X
That sounds a good plan. I would recommend wearing socks, however. It's still a bit nippy out there. x
Well how did it go - cunning plan? Good neuro? Any progress? 🤞🤞🤞
Hiya Twitch! Thank you so much for asking. Means a lot.
Just recovering from a bloody good cry. Have a definitive diagnosis. Wait for it...
ME/Chronic Fatigue Syndrome
Chronic Migraine
Fibromyalgia
Top up and no makeup didn’t work.
Though he did say I was obviously unwell. I did a lot of semaphore with print outs etc. Poo-pooed ‘em all said none were of any significance.
Basically said I’m an over achiever with burn out related to stress and trauma. All symptoms are related to a faulty nerve that has heightened my response to environmental stimulus.
And I ‘need to be kind to myself’.
I’m tempted to just give up and accept it.
X
Oh I am so so sorry. Am a lurker on this form cos without a definitive diagnosis for all my non RD, non Sjogrens symptoms I feel maybe I shouldn’t be here 😏. But having seen your post I just want to say I understand and feel for you so much having just been through a similar awful appointment. (I was told that all the symptoms which render me virtually bedbound and completely housebound are down to fibromyalgia making me over sensitive to pain. I am to come off all my meds and exercise more and there is nothing more to be done to help. Oh apart from seeing a psychiatrist) I know that none of this helps you directly but perhaps knowing we are not alone can help - and lots of people here seem to have had similar awful experiences. Thinking of you and sending kind wishes Tillyxxx
Tilly my friend we’ve been communicating for years now and I feel absolutely outraged by your description of your latest appointment. Please do keep posting here though because this comment is so kind and empathetic - as you’ve always been to me as well.
You deserve so much better from the medical profession. Grrrrr
Thanks so much for your kind words Twitchy 
xxx
😱😫😎😘
Oh Tilly, such a lovely message to read first thing in the morning. It’s reassuring to know that I am not alone in this. Thank you. Xx
This forum is wonderful I may just lurk with you.
Thanks MsAndyIvy - I’m so pleased you found some reassurance - our experience seems all too common doesn’t it? I see from your latest post that you are now suffering hugely from the stress associated with your appointment and I feel for you very much. Thinking of you loads and hoping you get some respite soon. Tilly xxx. PS I agree that this forum is great - and I very much like the idea of having a fellow lurker
I can feel your frustration! I too have a diagnosis comprising of chronic migraine and fibro but it just doesn’t seem to cover my range of weird and wonderful symptoms so I also bob onto this forum now again as it just seems to fit. Could you ask the GP to refer you to rheumatologist? I’m trying to pluck up the courage to do the same. I have a fab GP but worried she’s really going to start thinking I’m a hypochondriac now. So sorry your symptoms are having such a massive impact. Hope you have some relief soon.
Hi Button
I’ve been through a rheumy too 
I just feel like there’s another explanation , it’s so frustrating. Everything is taken in isolation and not as a whole.
I’ve looked at my GP records and I’ve been complaining about some of my symptoms since 2002.
My symptoms are the same as my sister’s who has Lupus.
Cheering myself up and having my hair done!
The hypochondriac thing is awful but comes as read. Even my sister was told she was one and she nearly lost her kidney.
If I had the energy I’d organise us all in to some sort of rebellion!
Onward comrades!
Hi MsAndyIvy
Don't get down about that appointment. As far as I know, that list is a general consensus from Neuro consultants, for patients suffering invisible illness.
I'm sure if patients present with a stroke, brain injury, etc.. the very best care is provided by neurological teams. So, we must acknowledge they do fantastic work.
My own story? I collapsed after struggling to work, to live, for 9 years, I had never been told that sjogrens query lupus had shown in my blood test. I pushed and pushed myself every single day. My GP called an ambulance when I collapsed.
I was suspected to have suffered a stroke. CT was ok. I explained that I was exhausted, had not slept for weeks due to sciatica and prolapse disc pain... alas, neurologist shut me up! He told me stop talking about sciatica... I'm a brain Dr!!! Lol..
My discharge letter diagnosed migraine! I do not suffer with migraine. Though I do get headaches.
My GP told me she thought he had mixed me up with another patient.
You know how you feel. Drs don't always get diagnosis right. Drs don't always like thinking outside their comfort zone.
Chin up. Wishing you well. X
Yes. Wonderful! Always my first go-to!
Members here gave me more hope, support, care, understanding, knowledge, than any Dr could/would give me at the time I was floundering, not knowing what was happening to my health.
Please don’t be disheartened. As Supal says it’s a standard diagnosis from neurologists and many of us have been in the receiving end of misdiagnosis before and during our lupus journey. There is a lot of crossover with chronic migraine, fibromyalgia, ME and some of our symptoms but the difference is that if it’s lupus (or something else on the autoimmune spectrum) there is treatment that could help.
Have you tried steroids? That’s usually used as an indication that it’s more likely to be inflammatory/ autoimmune if your symptoms improve. I have found my neurological symptoms have completely resolved with long term high dose (now reducing) steroids and rituximab. I also had the pins and needles, cognitive difficulties etc. My rheumatologist and I have politely corrected the neurology department and I saw one of the top lupus specialists a few weeks ago and she said it was awful how many lupus patients get these diagnosis. I’m hoping to do a research study (if I get the funding!) into the effects of these misdiagnosis on patients because so many of us seem to be damaged by it. Have a look at the recent research on lupus uk page saying how many got these diagnosis first, also a US research study showed about 50% were misdiagnosed and a lot of this is with ME, stress, in your head etc so you’re definitely not alone.
Keep searching for the answers, find a rheumy who will look at the whole picture and don’t ever be embarrassed or worried that they’ll think you’re a hypochondriac. It is lack of knowledge that makes them make these judgements, it is not your fault. If you were a hypochondriac you would have been before this all started. It is your real symptoms that are making you go repeatedly to the drs, hopefully someone will be able to piece it all together and find out the cause and treatment soon
X
Well I’ve just caught up and am horrified for you but also unsurprised.
A close friend has just been by for lunch and we had a good catch up (I’m up in old island home for 1 more day - lots of lovely old friends to catch up with in short space of time). I showed her my letter to awful neuro who was allegedly concerned about my apparent “heightened health awareness”. The last neuro came up with functional left sided hemiparesis so they are at least creative with their codes for hypochondria!! My nurse friend has a degree in biochemistry but has no ambition to do anything with it. She just couldn’t believe that any doctor could risk writing this kind of nonsense in a clinical letter.
And then she was even more incredulous that the wretched neuro hadn’t responded to my letter of complaint - even though I copied in my rheum, vascular doctor and 2 GPs. All my friend could say was “how incredibly unprofessional and downright rude this woman is. One can only assume she must be too proud and too humiliated and also too absolutely furious with you to know how to reply?!”
I have no truck with this stuff. They aren’t psychiatrists so are straying well outside their area of specialism. Hold on tight and keep up the brave fight with the help and support of the real experts ie us lot!! Xx
Well said twitchy! Can’t believe your neurologist didn’t respond. Also can’t believe you haven’t been offered rituximab/ IVIG when it could help the progressive neuropathy 😡
X
It’s all about money Melba1. I’ve got no illusions left where health and spending priorities are concerned.
But I also think a time comes for each of us when we have just absolutely had enough. That neuro letter was one of several “ping” moments for me in the course of my long autoimmune journey. I think MsAndyIvy has probably reached a similar moment.
But please take time to recover yourself first before deciding how to proceed. These kind of specialists can make us feel as if we have been in a head on collision.
The thing we each have to decide is whether or not a doctor is qualified to decide that we are fanciful enough or burnt out enough or whatever - to have a somatisation disorder. If they can’t prove we do but try and tell us this anyway - then the real battle commences. If we think they could be right in their analysis then we request to be referred to someone who is qualified to diagnose and help us.
No one diagnoses me with anything these days without having to prove they are right or refer me to someone who can. X
I’ve been trying to come to terms over the last couple of days and guess what? Have come down heavy with pain, migraine and aches. I can hardly walk due to how painful my left leg is.
Stress related? I think so.
Thanks everybody for your comments and thoughts. Xx
It always happens this way to the best of us - autoimmunity is terribly discerning unfortunately!! X
Is the constant tiredness an ongoing part of lupus or does that to have its ups and downs
Pain in joints which feels like in the middle of my bottom...hurts so much to walk.
Fatigue getting me down
Help with a bad flare up 
