Can anyone help me find out what is happening to me?

New diagnosis and before diagnosis
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Hi,
I am new to the forum and I am struggling. I feel like my life has become such a huge struggle. I have gone from a gregarious life and soul of the party with a successful job that I love to this… off sick, unable to do very much, limited by a body that keeps shutting down.
My story started in February with crushing, vice-like pain in my chest. Visit to a and e found no cause. It was accompanied by vertigo and fatigue.
I went on with my life but was still dogged by terrible fatigue. Very few symptoms, other than bladder problems and a wobbly leg when I lifted my heel- which became my party piece! (The leg not the bladder).
In September, I had an episode at work.It was like someone had pulled my power cord out. I couldn’t stand, loss of sensation and power to my left side. Vertigo and blurred vision. Visit to a and e diagnosed a stroke which was later ruled out by mri. After this episode I developed several strange symptoms which stayed for several weeks my foot went numb, pins and needles in ring finger and little finger.Reduced motor skills. My pupils went different sizes and reacted differently to light. I also started with speech difficulties- word finding, word order and struggled to say the correct sound.
I am a deputy headteacher in a primary school so as you can imagine my children had field day with this one!
I was referred to neurology and saw a neurologist. He seemed to view all my symptoms as separate entities. My dizziness and loss of feeling was migraine with aura, my pupils an ophthalmic problem, my speech was anxiety, my fatigue was post-viral. It was only when he tested my reflexes which were excitable and considered my bladder problems that he ordered a brain and spinal mri to check for lesions.
This was carried out in a mobile mri and the results were unremarkable. That’s it. No further tests- see you in February for a telephone consultation.

In the meantime, I had another episode at work where I experienced another similar power shortage to my body. I lost the ability to control bladder. In the following days, my pupils ( which had returned to normal) became different sizes again. The loss of feeling came back but much worse. I couldn’t move my toes. Pins and needles in other foot. I struggled to speak. I had fizzy, buzzing, burning skin sensations all over. My thumb now feels like it has an elastic band around the base and doesn’t feel like mine.
Since September, I have constant fatigue, struggle to see in dim light, vertigo, speech problems, fine motor skill problems all the time. These all increased during the episode.

I can not work. I can not communicate. I can not function day to day.
I feel like no one cares.No one wants to find out what is happening to me. I feel like a clear mri means off you go, get on with it. But I can’t get on with it. I can’t be the friend, wife, mother, daughter, colleague, teacher that I am.
Can anyone advise me?

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Hi Jude, oh love, I do get your feeling of panic. No wonder you feel so bad.
I do identify, as my problems began in 1998 and I didnt get a proper diagnosis until 2019!!
All my tests ie 4 MRIs, 2 LPs, 2 EMGs, a VEP and bloods all came back normal. All this, even though my bladder and bowels were problematic, my walking was dangerous (foot drop), my fatigue levels were bad and spasms and stiffness plagued me. Reflexes were typically Babinski.

I was seen every 6 months and told I should be happy as there were no signs of demylination on MRIs. How could I be happy when I was suffering so?

These symptoms clearly pointed to PPMS. I had no let up and progression happened quickly.

So back to you love, there IS obviously something wrong… despite neuro telling you otherwise.

Go back to your GP…dont be fobbed off…tell him/her how bad you are…ok, you may have already done this, but do it again. It could be MS, ME, all any number of other things.

Let us know how you go on sweet.
Love Boudsxx

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That sounds horrible - poor you. When the GP thought my pupils looked different sizes, she referred me to the Ophthalmologist fast in case I had uveitis as well as MS (I didn’t). A good GP is always a useful person to talk through next steps with, when hospital specialist advice has been unsatisfactory or inconclusive. If you have a good GP, I would suggest you start there. Easier said than done at the moment I know.

I am sorry that life is being so frightening and difficult for you. I hope that things calm down for you soon, and that you feel more confident of the path to find out what ails.

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That sounds horrible. In my opinion you should make it easier for the medical professionals to refer you for investigation. By this I mean make a fuss, become a pain in their collective butt, to the extent that they have to take you seriously and offer some support. It might be difficult for them to help but you can make it easier for them if they do help.
I once sat on the desk of a consultant and refused to move until he actually did something.

Good luck
Mick

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hold-on – you’re being let down by the medics but you are still there - you are still a wife, mother, daughter etc. Whilst it may well be m.s. you mustn’t allow it to obliterate you. The symptoms you have will have a massive impact on you and also on those closest to you - that doesn’t mean the relationships are fractured - things may be different but despite the difficult situation you’re in you have to work on these relationships.

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You don’t mention any SSEP or VEP tests being done. These could help to objectify existence of neurological issues. Also, could you get parallel investigations by hospital Eye dept. I got a clear MRI through neurologist them a few weeks on another done by hospital eye clinic found a lesion found on optic nerve. Also could urologist arrange urodynamics. This test can also show neurological issues.

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Hi Jude, I can fully understand your distress and with all those symptoms I can’t believe that a good medic could fail to help you and diagnose something that’s causing all your problems.
The NHS is so busy now that you must continue to shout as those who don’t can easily get overlooked. A

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Hi, Jude​:upside_down_face: I am sorry to hear your story but happy that I’ve had the opportunity to read it. Please, please, please find another doctor and insist on a “proper” MRI, and perhaps even a spinal tap. I blissfully ignored my symptoms for about 5 years and was then misdiagnosed almost 3 years ago. About 3 months ago I was diagnosed with MS, the most ridiculous flare put my EDSS scale right up from a 0 (nothing wrong) to a 6 (I use 2 walking aids). I believe this could’ve been prevented if the doctor cared enough to convey a diligent search for what was actually wrong with me (the one doctor even blamed old age…). So please, DO NOT LEAVE THIS ALONE until they have at least an MRI done. I know it is expensive, am too familiar with paying everything out pocket. Best of luck and keep us posted!!:cherry_blossom::hugs:

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it was two VEP first 2007 and last late 2015 that finally clinched my diagnosis of MS. There was just too much still going on. Plus the Lesions on spine over time in different places. it took me 2006 until 2016 to be diagnosed.

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Thank you all so much for your support and advice. It is overwhelming. I have emailed my neurologists secretary demanding further investigations. I have had no evoked potentials tests and no lumbar puncture and no contrast mri. I have also requested a referral to ophthalmology. I also have a telephone appointment with gp this morning so I will see how that goes. That will be interesting as I am really struggling with speech today!
Thank you again

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hi how did it go?

if you youtube VEP there are some great tubes about it. one doctor in uk talks about it i learnt a lot from him.

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Great stuff Jude. I’m glad our replies/support spurred you on to press for more investigations.
Boudsxx

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I suggest you also request a copy of your MRI scan on disk. If you see a different neurologist elsewhere this could be useful. What is ‘unremarkable’ to one neurologist may not necessarily be unremarkable to another. The hospital you attended will have a formal request procedure you will need to complete to verify that you are who you are due to data protection legislation.

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My gp phoned an ambulance Friday am so I am in hospital. They did a ct and diagnosed me with functional neurological disorder.
I have been pushing for further investigations but not getting anywhere. The more distressed I become the more they think it is functional. I am trying hard to be calm but inside I feel like screaming.
How can they diagnose without looking at things further?
I have sudden differences in pupil sizze, extremely brisk reflexes which carry on after they have used the hammer and bladder problems -which as I understand it are not functional
I would prefer a diagnosis of fnd but not in the absence of a full investigation because they haven’t bothered to investigate further.

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Arguing with doctors who have made their minds up is often like banging your head against a brick wall: it won’t get you anywhere, so you might as well stop. They probably won’t pay any attention unless and until something else unambiguously clinical happens. Of course it all is always possible that your GP will put his or her foot down and insist on further investigations. If that happens then hurrah, but if it doesn’t, then in your shoes I would be inclined just to step back and wait.

FND is a thing, no doubt about it. And I hope that’s what you’ve got because that can get better. If there is some underlying disease process going on that isn’t FND, it will show itself soon enough, and it will make its own case. They say that time is the best diagnostician. In the meantime you have plenty on your plate coming to terms with the diagnosis that you have received. I am very sorry that you’re having such a miserable time of it.

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You can only get diagnosed with FND if they cant find any medical reason for your issues so doing a CT scan has obviously shown nothing so they have for now given you a diagnosis of FND which is a REAL and delibetating disease. You need to take a deep breath and just go with the flow for now. @alison100 is exactly what I would have said myself.

@Jude1 my neurologist asked me if i would see a second opinion he wanted to cover all his ideas. so i paid to go and see an EXPERT ON MS. I got there and he didnt even know who I was hadnt even seen my notes. TALKED TO ME for 20 minutes and told me i had FND. I said i dont care what it is as long as i get cured.

so without seeing my notes that was his diagnosis. I did read up about FND and found a place where you could go to be supported and learn to live with it, which i thought I would do. 2 weeks later i got another letter off him. He said I have to apologise to you as not seeing your notes which I have now, I cannot give you a diagnsosis of FND, as there are too many positive findings on your tests…so back to my neurologist who had in the meantime rang me to tell me this guy wasnt being very professional. oh i also got my fee back.

SO THE POINT IS you can only be told you have FND if you have neurological disorder without evidence. Which it would appear you are suffering with for now. Like alison said and i agree as i say the same.

IF IT IS MS it will eventually show itself. I waited 16 years had all the proof but not quite the last piece of the jigsaw puzzle which eventually came.

I did think about all this very seriously actually and truthfully if i was diagnosed FND correctly I would have been relieved. No really i would, as i knew i wasnt going mad there was something neurological going on, BUT I HAD A CHANCE for a new life … i would like to you to read the link i have given. It is the best written about FND the one my neuro sent me years back. It will help you to understand your not crazy or being fobbed off. FND is actually a condition in its own right. It is a NEUROLOGICAL DISORDER.

Functional neurological disorder (FND) is a medical condition in which there is a problem with the functioning of the nervous system and how the brain and body sends and/or receives signals, rather than a structural disease process such as multiple sclerosis or stroke. FND can encompass a wide variety of neurological symptoms, such as limb weakness or seizures.

True FND is actually considered a rare disease. Functional Neurological Disorder - FND Symptoms & Treatment

please read it, it will even explain the neuro findings. you talk about.

this comes from the link.
FND is diagnosed on the basis of positive physical signs, and usually requires a neurologist or a doctor familiar with neurological diagnosis. Some examples of these signs are:

• Hoover’s test is for of functional leg weakness – the patient may have difficulty pushing their “bad” leg down (hip extension), but when they are asked to lift up their “good” leg, movement in the “bad” leg returns transiently to normal.
• The tremor entrainment test for functional tremor – this is when the shaking of an arm or leg becomes momentarily better when the person concentrates on copying a movement that the examiner makes.

they have eliminated a stroke etc so now they want you to get the right help. You have been TAKEN SERIOUSLY your GP would not send you to hospital on a whim, he knows you have a neurological disorder and wants to make sure you get the right diagnsosis. HAVE FAITH IN HIM HUN.

go with the flow, like we have both said if it is MS or worse it will eventually show itself. xxxxxxxxxxxx remember 16 years for me. i know others who have had to wait even longer then that. BUT in the meantime dont block your mind off from it PROVE THEM WRONG… go with the treatment if it is FND you will get better … get my drift?

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Hello Jude

Further to the above comments, with which, sadly I agree, there is an organisation which can answer a lot of questions about Functional Neurological Disorder: What Is FND - FND Hope International

I said ‘sadly I agree’ with the other posts, because it seems that you, along with many others among our number, would prefer a diagnosis of anything rather than FND. I can see why. I too think that while accepting the FND diagnosis, you could/should keep chasing the other specialists mentioned and other tests.

So if you can get a referral to ophthalmology, to urology for a urodynamics test and get neurology to do a VEP test, you should (in my opinion). Further, I’d try to get the neurologist to refer you for another MRI, one with contrast dye, but also, one that covers not just the brain but the whole spine. Also, a lumbar puncture.

I doubt that you’ll be content until you have covered all the bases. Nor should you. Indeed, instead of waiting until February for a phone appointment, why not write to your neurologist spelling out everything that’s happened to you this year and requesting the further tests which have been collectively suggested by the forum members. (Nb, I wouldn’t say that the suggestions have been made specifically by us, doctors don’t like people consulting amateurs anymore than they approve of Dr Google!)

Best of luck

Sue

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Sue, I think the trouble is, there are a number of lazy or opinionated neurologists who see FND everywhere, and particularly if it is a woman they are looking at!

I came across one of those (well two - his junior had been trained in the same mold), in Sheffield, in 2007.

I’d been diagnosed with cervical dystonia by a general consultant and had been referred to neurology for botulinum toxin treatments. I saw an arrogant young neurologist, who spent most of the time discussing the case of a young man with suspected MND with another doctor rather than giving any attention to me. He eventually, in an off-hand manner, got me to do the Romberg’s test, and told me off for touching my chin (it is called a ‘geste antagoniste’ which is absolutely typical of dystonia as it reduces the spasming and pain of dystonic muscles). He then got me to walk backwards - and yes the dystonic muscles were not spasming quite so much - also typical in dystonia if the movements are not habitual ones, and I don’t habitually walk backwards! I saw him raise his eyebows to the other doctor, a '‘we’ve got another of them’ look. He didn’t bother to check which muscles were spasming and gave me the botulinum toxin into the wrong muscles - he did the wrong side (and injected into a nerve too whilst at it - incompetent plus arrogant). When I asked if there were side effects to be aware of, he said no - really dismissive. (There are quite a few - botox flu being the most common, and I did get that). I’m sure he’d decided I was psychogenic case and therefore it didn’t matter which muscles he injected, and also that I should not be informed about possible side effects.

Well having paralysed the wrong muscles, the treatment was not exactly a success, the dystonic muscles now had ineffective muscles to counter them, so really twisted my neck and back. Bloody painful. Had to wait months for it to wear off.

My GP referred me months later to the more senior neurologist to see what other treatment might be available. The minute I walked in the door I could see this even more arrogant neurologist had already decided I was a neurotic middle-aged stupid woman. Just launched straight away into that my dystonia was psychogenic. He told me it was psychogenic because I used the geste and because my dystonia wasn’t the fixed type. Now I had done my research and I knew it was exactly the opposite - lack of geste and fixed dystonia is often psychogenic. I should have challenged him on it. Instead just gave him a look, which he can’t have missed. (How should you react when a consultant deliberately lies to you - it is not something you expect so took me quite off guard! Nowadays I would challenge. ) Then he said he’d refer me to a neuro-psychologist and would then be very happy to see me after that. And smirked all the time. I knew I was in the catch twenty-two position. If I refused, that would confirm it to him as psychogenic, so I had no option but to be seen. Whilst I was pretty sure that it wasn’t psychogenic, on the otherhand if it actually was, it was better to know, and deal with it.

I saw the neuro-psychologist and after a long session she confirmed I had absolutely none of the pyschogenic pathology (her words) - she was quite angry I had been referred, and wrote a very pointed letter back to the neurologist. She didn’t mince her words! I then got my GP to refer me to Newcastle which had a very good dystonia clinic and it was reconfirmed as cervical dystonia.

Now this particular senior neurologist was at that time on a mission to prove that ME / CFS was all in the mind. He also believed that a very high proportion of people referred to neurology clinics had FND. Very vocal about it. He is still working and hasn’t changed much. Spotted a youtube video from this year about FND. It appears he still thinks FND is all and only psychogenic, driven by stress, though is slightly more careful in his language.

However views on FND have changed over the last 10 years or so. He is old school. There are others who view it very differently and are helping people with it. The ‘hardware’ problem versus ‘software’ problem turned out to be a very useful metaphor when some neurologists started to actually think through the implications and they began to see FND in a very different light as a result, which is leading to much better treatments.

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I believe everything you say. That’s partly why I said ‘you, along with many others among our number, would prefer a diagnosis of anything rather than FND. I can see why. I too think that while accepting the FND diagnosis, you could/should keep chasing the other specialists mentioned and other tests.’

Failing to accept a given diagnosis often gives doctors the excuse to treat patients the disgraceful way you were treated.

Meanwhile, it’s important for people to know what they’re talking about or being diagnosed with.

I’m glad you finally got a diagnosis of MS, sorry it was so difficult and of course that you are so quickly disabled by this horrible disease.

Sue

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