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Am i going mad??? I'm new needing advice please

Hi hoping someone can help me i feel like im going mad!!! Saw neuro 29th September he ordered bllods for vit d, inflammation and ANA which have come back normal. Also requested Mri of brain and spine which still awaiting appointment for. However, received report from the visit and im quite annoyed by it!!! He states my history and symptoms, then goes on to say that i lookex well and was suntanned having recently returned from holiday (what’s that got to do with anything), carries on to say he could not detect any neurological abnormality apart from some slight brisk knee jerks which were symmetrical. He doesnt say that when asked to do the balance test with eyes closed i fell over to the left side and he had to hold me up aswell as unable to correctly do yhe nose to finger test. He goes on to say he suspects that all my symptoms are likely to be tied in with my history of chronic fatigue and are likely to be functional in origin - ie. caused by problems with the software rather than the hardware!!! What does that even mean??? He concludes by saying he anticipates the mri will come back as normal and that he will see me in 3 months time with results. Am i losing my mind?? I feel like im at my wits end!!!

Hi Nicole,

I can’t give you any useful information about MS, but I do fully understand the ‘Am I losing my mind / wits end feeling.

I too fail on the balance test with eyes closed. However as they found no sound of peripheral neuropathy, they seem to have concluded I’m faking or it’s psychogenic. I also suffered from ‘You’re looking well’ syndrome.

I missed my nose, last time I tried to do the finger to nose test, though perhaps they are looking for tremor, rather than accuracy.

Functional seems to be an alternative word for psychosomatic. Having spent quite a bit of time reading (my background is that I’m a vet, so not expert in neurology, but not completely ignorant) I concluded that it seems quite possible that in many cases, they assume psychosomatic, just because they are currently unable to identify a physical cause. I found myself wondering whether in future, they might discover a scientific explanation, rather that what appears to me to be largely guesswork.

I’ve had gradual onset and worsening head tremor. Last week I developed reflex muscle twitching (myoclonus) stimulated by bright lights, sudden noises and touch of certain parts of my body. I also found myself, after a series of alarming myoclonus jerks, briefly unable to speak.

They did lots of tests, but other than the stimulus responsive myoclonus, found nothing abnormal. Had my MRI this morning. It came back negative and they unceremoniously discharged me from hospital with no indication of what happens next, other than an outpatient appointment in three months.

We were meant to be on holiday this week. That had to be cancelled. And now nothing. It’s nothing serious apparently. Balance issues have been coming and going for a year and now progressed to myoclonus and clumsiness when walking. I’m swithering between anger at the useless and unsympathetic doctor, and wondering if I’m mad.

Sorry, I seem to have rambled, but it’s just so frustrating, being told there’s nothing wrong, when there so clearly is.

How frustrating for you both.

Have a look at Symptoms - FND Hope International There might be an answer that’s not MS but not psychosomatic either.

Sue

Thanks Ssssue. My understanding from the literature I have read suggests that there is a lot of discussion over whether neurological symptoms that have no known physical cause and are considered to be subconsciously produced are called ‘functional’ or ‘psychosomatic’. My understanding is that the terms are interchangeable.

I honestlly wouldn’t have been too upset if they had stated my illness was psychosomatic. I’ve read enough now to know it’s something they can positively diagnose, rather than something they just think when they can’t find anything and I can understand, in my case, why they might think that.

But if they did think that, they didn’t tell me so. When I asked, the doctor who was discharging me asked if I would like to be referred to a psychiatrist. My answer was ‘not unless that is what my designated doctor thought. I would happily go, but only if there was good reason.

I just wanted some kind of plan. I was expecting physio or something. Thanks for the link. The guide is interesting, but I already have to consciously lift up my feet when walking and concentrate consciously on things that should be automatic (gait suggestions - will look at the others) just want to understand why.

I have to be honest FND is what I’m thinking/hoping i am to be diagnosed with. It does not mean someone is crazy. It’s real symptoms just without a biological cause. I don’t know much about it but that’s how I interpret it so if that’s what your told I would work with it as opposed against it. Should your symptoms be ms or something else they will surely figure it out. It’s not an easy thing to digest but I read and listened to a few talks from a neurologist who specialises in it and it made sense. I say this as someone who is relatively new to all this. Even though I have had symptoms on and off for years. I really don’t know much about anything so I’m rubbish with my attempt at comforting advice but I write this from a good place xx

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i was diagnosed in 2008 and i can safely state that ms is a mental muddle!

it lulls you into a false sense of security and then tips you off your feet when you aren’t looking!

pah! you are a sack of sht, a crock of crp, ms!

now have a gin!

it does no harm and make everything pleasantly fuzzy.

cheers

carole x

Hi catwomanCarol.

Were you diagnosed quickly, ot was there a period of uncertainty? Did you get the impression the doctors were dismissing you?

I am tempted to try the gin, however I suspect the problems might still be there in the morning!

You are looking at it in exactly the right way saltypie (IMO). FND is real, not just psychosomatic.

Well put.

Sue

The trouble is that we all go through different journeys to our eventual diagnosis. Some are diagnosed very quickly following just one episode, others go through this time of ‘limbo’.

In a way, it was easier in the days before we had the internet. When I was first tested, I didn’t even know what the tests were for and didn’t understand that MS was what they were looking for. They actually found CIS initially although they didn’t call it that and didn’t even think about telling me!! But that’s what the world was like 20 years ago.

You are both better informed than I was, and have more access to information. Which is a blessing and a curse equally. It’s simply a very hard time to be living through. You have my sympathy for your fears and worries during this time.

Sue

Thanks Ssssue. That is very true. I had two melanomas removed back when I was in my twenties. I found things out gradually and had to rely much more on what the doctors told me. It was still stressful, but not frustrating in the same way. I’ve looked at the melanoma information available now and it’s so confusing it’s ridiculous. I also made the rookie mistake of mentioning ms as a possible diagnosis to the neurologist. I think it was red rag to a bull. She was determined from that point to prove me wrong, I think. Looking down the symptoms list on this site, I have eight out of the thirteen symptoms listed, but as the doctor failed to take a good history, she doesn’t even know about three of them and going back now and pointing them out will be seen as more prevaricating, I suspect. That said, one of the nurses and one of the other doctors actually admitted to me that the doctor I was allocated was ‘tactless’. When other professionals are willing to make such comments, it suggests to me she must be pretty awful. I shall ask for the doctor who made that admission next time, and hope that can be accommodated. I would be happy to be diagnosed with FND. I would just like to feel something is being done and I am being taken seriously. Your comments are much appreciated. I hope, Nicola, that you aren’t upset by me muscling in on your thread. Your feelings just rang a bell with me.

hi to answer your question, i was referred to neurology. the neurology for my area (bolton) is on outreach from salford royal, the main neurological hospital in manchester. he wasn’t an ms specialist but he was a brilliant listener and made copious notes. he knew how anxious i was to know what was wrong with me and phoned my mobile to tell me the results of my MRI. then he had to pass me on to an ms specialist consultant. i’m so very sorry for those of you who don’t have such a fab neuro. i was diagnosed on the strength of one mri and a lumbar puncture. i can remember unexplained symptoms from back to my teens (i was 50 at dx) so assume that old lesions and new ones were evident. i was going through a relapse at the time of my mri. good luck and if you aren’t happy with your neuro, ask for another. carole x

Hello I am a new member undiagnosed as yet Lumbar Puncture yesterday. I was first taken unwell 7 years ago that was the start of my journey. The first thing that happened was very severe virto that lasted a few weeks. It completely put me on my back. I was sent to see a neurologist who did a MRI of the brain which came back clear. After another year it came back alongside much pain in my body. Aftet another year I was diagnosed with Fibromyalgia in 2012. I went with that as I knew no better. My symptons went from bad to worse greatly affecting my mobility and cognative issues. In 2015 I was so unwell I went back to my rheumotologist with new sypmtoms of tingling and burning in my extremities. My memory was greatly impaired and my walking a lot worse. Further blood tests showed positive Lyme Disease. Now in 2017 I have had a neW MRI which has showed white lesions. I have pallor optic disc and other slow response tests. Also plantar reflex was ‘mute’ whatever that means.I just want answers after 7 years of hell. Any comments would be apreciated. I am not afraid of diagnoses I just want to get on with my life. Than you

Hi Kim. Good luck with your results. I completely understand the desire for some kind of diagnosis. It sounds like you are way further down the line than I am. It’s so hard to prepare yourself when everything is so uncertain. I hope you also have found a supportive doctor as that can make so much difference.

Thanks SMcG it has been a long road! Good luck to you too