Now what?

I got my MRI results letter back today. The results are “…within normal limit. We have therefore not found any worrying cause for your symptoms and in particular there is no evidence of multiple sclerosis. This is excellent news.” Except that this doesn’t give me the feeling of relief I was hoping for. Still no diagnosis (yet) though I suspect that my GP will settle for FND. Do I make a GP appointment to discuss the next step or will they get in touch with me?

I can understand that sometimes uncertainty feels paradoxically worse than bad news.

I am sure that the good news from that report will quickly overcome such feelings, though. You are still in with a chance that whatever is the matter will get better. The game’s not over: you are still in with a shout that all will be well. Hang on to that thought through the continuing uncertainty!

Alison

Hi Reiki x

In many ways it is very good news that your MRI was normal, but I can totally understand how it leaves you still feeling unsettled… because you still have unexplained symptoms but as yet no firm answers.

I might be wrong on this, but I would suspect that - unless you have been told either verbally or in writing that you are due to have a follow-up appointment - it is possible that a clear MRI could mean that you may not be recalled for a routine review.

If I were in your position, I would perhaps give neuro secretary a quick ring to ask for clarification on this, and ask whether you are going to have a follow up appointment, or whether you have been discharged. If you are down to have a follow-up appointment to discuss FND, the neuro secretary should be able to tell you when your next appointment is likely to be. But if you have been discharged, you will probably need to go back to GP to ask for advice about where to go from here.

Either way, I think it is perhaps a little remiss that the letter has not made it clear what happens next - I would probably give the neuro secretary a ring to find out if I were you

xx

Hello Reiki

I’m glad there is no evidence of MS on your MRI scan. I can appreciate your concerns though because you still have symptoms that need a diagnosis.

I hope when you see your gp, thing will be made clearer.

Take care

hi… it’s encouraging re results but equally for you it does not give you clarification or answers to your symptoms. if FND is the only option left the you still need to see a neuro and one with experience of this…they can explain a way forward for you and a plan regarding treatment etc…only a neuro can dx FND…and it has to be after everything else has been excluded …do look at FND.org it’s a great website and full of info etc…as others suggest worth ringing the neuro secretary in any case…and also seeing your gp …I would make an appt to discuss… hope this helps :slight_smile:

Thankyou everyone. I will ring the neuro secretary on Monday for clarification. Scoobie - I’ll take a look at that site, thanks. I’m reading a book about acceptance at the moment - quite apt as I’m struggling with not having the answer yet and finding it hard to accept things as they are. Well, hopefully I’m close to a diagnosis and treatment and as Alison kindly points out, there’s a chance of getting better and to hang on to that thought. Hugs all round :heart:

Hi just to say I’m in the exact same position as you right now. I also feel the same as you, when given the news that there were no signs of ms on my scans. It has left me feeling very uneasy. I do however have a follow up appointment with my neuro next week to discuss everything. Perhaps they will do the same for you. I am determined to get to the bottom of this and am also hoping I won’t just be discharged as I know there has to be some logical explanation for our symptoms. Sorry I’m not much help but I totally feel your frustration at having no answers. Hope you get some soon Jo x

My neurologist did tell me that if the scan came back clear it would most likely be Functional Neurological Disorder and even recommended a site by someone she’d studied under: www.neurosymptoms.org Perhaps you might like to have a look at this, Jo? I just need to be told, for definite, what my diagnosis is. FND is a bit of a ‘fuzzy’ condition (maybe less so than M.E. though (which my GP suspected but the neuro discarded). In FND, the nervous system isn’t damaged but neither is it working properly. Hubby didn’t help by saying it was probably psychological…I need a firm diagnosis so I can explain what is going on to family and friends, as well!

I can wholeheartedly understand your uneasiness in this situation. Many moons ago when you first posted and thought that a dx of FND would be a dx nonetheless, I was worried at your response. I have been down the whole ms, cfs, me, FND route and still nothing except a whole load of unexplained symptoms. So I can completely understand your feeling of still being in limbo. As much as info is offered about a damaged nervous system without signs of damage, it’s like saying you have scar tissue bit no signs of a scar. I personally don’t buy into it. It’s basically a get out clause for sticking a label something that can’t be seen. I would tread cautiously, as many MSers have reported being dx with FND prior to their ms dx. I am not saying ignore the dx, but if they think it is something stress based, which they often hint at, then they should give you some means of psychotherapy to find the cause, or the symptoms will continue, causing more stress and ultimately more problems. Do everything they say,make any treatment they offer, but if in 12 months time you are still getting new symptoms or old ones are still a problem, don’t be put off pursuing it either. I sincerely hope they offer you something and that it does clear up enabling you to live an active healthy life once more. J x

I understand this is extremely frustrating, infact, it was a relief when I got my diagnoses. It is worse that there isn’t a name for it.I’d discuss it with your GP if I were you!

Newly Diagnosed (14)

The last thing you want is your husband using words like psychological…not helpful. Perhaps he should take a look at the above website reiki? I’be never heard of FND…will take a look myself out of interest. I have a friend with ME. Take care x

Reiki I know exactly how you are feeling. I have just been told my mri results were normal although my neuro wants to actually see the images and not rely on the report. She did say when i saw her briefly that two things someone my age presenting with those symptoms that stood out was MS or psychological. I have had some seizures too in the last few months she thought she was just seeing me to follow this up as the reg had not told her my other symptoms. I cant get my head round how it could be psychological. Yes i am stressed at times but how does that cause tingling and numbness, loss of dexterity and sensation? tripping up? i just dont get it x

Thanks for the info. I will take a look at that website x

hi -

superbecks, theoretically, (although I am not sure I agree with the theories) - quite serious neurological symptoms could be caused by psychological factors, - although I am not saying i think that is true in your case. It is a controversial area, because psychologists themselves cannot agree about the frequncy that this happens, and some people believe that the whole concept is flawed.

Somatization Disorder and Conversion disorder are examples of categories in DSM (american daignostical guide for psychological disorders). In this framework, it is believed that psychological stress (which the patient may or may not be consciously aware of) can be ‘converted’ into physical symptoms, including neurological symptoms, such as numbness, tingling, paralysis, blindness etc), and also that patients can misinterpret bodiy sensations of stress etc and that this can feed into existing health anxiety. There is no suggestion that the patient is malingering (making up / lying about symptoms), - Malingering is a separate diagnostic category. Rather, it is suggested that the patient is genuinely experiencing serious, debilitating physical symptoms, (such as pain, sensory and motor disturbances etc) - but that the route cause is psychological not physical. Such a diagnosis would only be seriously considered if no organic / physical causes of symptoms are found, and even then, it is not a straightforward diagnosis, and because mental health conditions are so often stigmatised, when it is suggested to the patient that the cause of the symptoms might be psychological, the patients response is often shock, denial, frustration and anger.

It is controversial, because of the complicated interplay between ‘physical’ and ‘psychological’ causes of symptoms. Eg one theory of ME is that it may be caused by an interplay of genetic / autoimmune and also psychological factors. In 2011, when researchers published a paper about the importance of psychoogical factors in ME, they actually received a number of death threats from some patients with ME who argued that the paper undermined the seriousness of their condition and that such research could jepordise future research into biological causes of ME, as well as negatively impacting public perception of the condition.

The very idea of conversion disorder is hotly disputed. Some people believe that it is an outdated Freudian idea that has no place in modern medicine; that the fact it is not always possible to find a biologial cause for symptoms does not necessarily mean that there is no biological cause - but instead is simply indicative of the limitations of current diagnostic tests / scans etc. After all, before the advent of MRIs, there was no real way of spotting demyelinating lesions in MS (excepting autopsys). Others believe that it is indeed completely plausable (and indeed quite common) for somataform / conversion disorders to be a valid diagnosis. Others people believe that these disorders do exist, but that the frequency that they occur is overrestimated, resulting in people being misdiagnosed.

Sorry, didnt mean to hijack the thread , just wanted to answer question about whether stress could cause neurological symptoms. I am not sure whether I believe that it can - at least not in the way neurologists often say that it does - but it is certainly considered possible by some sectors of the medical community.

Hello anon

I think what you have to say is interesting and makes for a good debate. Probably would have been better to start your own thread though. Not sure why you’ve gone anonymous??..your entitled to your opinion

Thank you, Anon, for a wonderfully lucid, even-handed and thought-provoking summary of the various strands of thinking in this very tricky area. That was so interesting.

Alison

Hi Blossom -

because I am aware that the topic of whether stress can cause neuro type symptoms is quite emotive, controversial and tricky, i chose to go anon. I didnt start a separate thread because i was responding to a specific question that had been asked in this thread.

Hi, when all my tests came back normal, yet my condition was progressing rapidly, as typical PPMS, I asked the question about stress causing my problems.

I had been through a lot of stress and lost a lot of hair because of it.

But I was always told no.

I am still not fully diagnosed…16 years on!

luv Pollx

Me again.

I am still seen by neuros annually and have been told I will never be discharged…I would rather carry on attending appointments, just incase they come up with a new theory!

luv Pollx

Fair enough anon

Either way, what you wrote was really interesting

Take care