Neurologist appt next week...TERRIFIED...please give me some virtual support

[claricebean]

Hi, I have 8 more days to wait until I see a neurologist. To say I am terrified is putting it extremely mildly. I noticed a weakness in the fine motor skills of my left hand a couple of years ago. But it only happened during certain tasks which I rarely perform (like tying knots in thread to hang the Christmas decorations up). In the last month, I have suddenly noticed a real inability to perform other fine motor tasks like doing up tiny buttons. My GP has referred me to neurology. Of course, I thought the worst and couldn't leave the google search button alone. I know, I know. But anyway, I have discovered that loss of motor neurons if never really a minor thing. I have self diagnosed a form of motor neuron disease. I know you are going to tell me that it's probably nothing, but the thing is, I know now that it can't be nothing. I am finding getting through the day almost impossible. DH and close friends are being incredibly supportive. I just want to see my DC grow up.

at least they are looking into it. wait and see what they say. write down questions you want to ask and take it with you.( they tend to not read it so don't worry about spelling or if it doesn't make that much sense).good luck. it'll be a long 8 days but mumsnet will be with you!!!!!!!!!

Hi,
i'm sorry you're feeling so stressed about this.
I know it's pointless telling you not to worry, but, you are getting the help you need to find answers.
I'm assuming you have self diagnosed with PMA/PLS?
TBH, self diagnosis is generally borne more out of fear than liklihood. In other words i think that the reason googling is such a bad idea is because when we have symptoms that worry us we tend to jump to conclusions with worst case scenarios and unfortunately google will 9 times out of ten give that worst case scenario.

I have a small loss of fine motor skills in one hand as well which is down to nerve damage from an accident i had years ago but this didn't become noticeable until a couple of years ago.
There are all sorts of possibilities that don't include MND.

It's great that your dh and friends are being so supportive.
I'm sorry, i've probably wittered on but i do wish you the very best. x x

I agree with Ben5 - at least in a few days time you will hopefully have more information or at least an idea of what (if anything) is the matter ...

Take care of yourself and don't look for the monsters under the bed or diagnoses from the internet ...

Hi - I have had numbness/ tingling/ etc down my rhs for about three years now, and it drives me crazy. I have seen two neurologists and they cannot find anything sinister. Don't know if this will help, but please don't worry until you have something definite to worry about. BTW if you are scared of mnd, apparently it rapidly causes deterioration so if you have had this for several years it is possibly not that.

A friend of dh's had weakness/numbness in her hands and feet, turned out to be a nerve in her spine being compressed, was fixed with an op. Step away from Google!

Thank you all for your messages.

Idrankthetea - yes, PMA. I know it may not be this but I can't find much else that causes asymmetrical motor but not sensory loss with no pain. Only multifocal motor neuropathy, which kind of mimics PMA but is treatable (and is very rare). Argh....

I am clutching at the straw that google only gives the bad possibilities, although I am not sure I really believe this.

I think the most likely outcome from next week is that the neurologist sends me off for a battery of tests. As most of these things do not have one diagnostic test, it is more of a ruling out process (i.e. lengthy). I am already running on pure adrenalin and I just don't know how I will get through months of not knowing. I hope the doctor can say something that will give me a bit of hope that it might not be a hideous outcome (even if in the end it is).

I am staying away from google for the time being! As a weight loss plan, I can really recommend it.

Thank you again

Bumping and apologising for being so needy...

I have spent the last hour playing lego with my two youngest, which I must say has made me feel more positive than spending the afternoon surfing (as yesterday). They give me such strength but I do feel everything a little bitter sweet at the moment.

Thank you again those who were kind enough to write me a message. I am sure you do not feel like you are doing much, but believe me, it makes a difference.

I can understand your worries ( i am going through the slow diagnostic process myself). I find it helpful to remember that some things are very rare indeed (so not as likely as common things like ?RSI/CTS its not my field) and I can't change it anyway whatever is the problem. However the battery of test are likely to be aimed at ruling out all sort including the rare. Distraction is helpful!

Magso, thanks for your support. I am sorry you are going through the diagnostic process too. It sucks, doesn't it?

Riven, I am sorry you have MS. Sadly I have quite a lot of experience with MS and I know it is a real PITA, to say the least. I don't think it is that because of my symptoms, but I know that everyone's symptoms are different, so perhaps I have too narrow a view of it (and other diseases, based on their internet summaries).

I am trying to go with the rarity thing. I keep thinking 'yes, but someone has to get it'. But then I don't feel the same about my odds of winning the lottery.

At this rate I will be totally insane by the time they give me a diagnosis. I hope that won't be preferable!

Thank you, thank you, thank you, all those who have replied. You are keeping me tethered to the ground (and stopping me consistently burdening my RL support network).

Firstly I think you raise a very good point about how completely pointless it is to rely on Google for this. It is virtually a certainty that it will only pull up the most serious outcomes for these type of symptoms because they will attract the most hits.

Secondly, these outcomes you're concerned about have a very low probability of happening, whilst far less serious outcomes (e.g. nerve damage, stress) have a much higher probability of happening. A friend of mine had similar (actually worse) symptoms to you and has just been through the checks - diagnosis, stress related.

Guess we will always play out the worst case outcome in our heads, it's the way we are. But try not to confuse our irrational worries (i.e. I'm doomed!) with the rational facts (i.e. the odds on it happening are actually very small).

My sympathies are with you,I have been through the treadmill of neuro tests for tingling on one side.

Results were inconclusive .

Try not to worry too much..easier said than done I know.

Imho I think MND would have progressed faster than your symptoms. I have experience of a friend and a few other people I know of with it.

ggirl (and SK from earlier), I am sorry your results were inconclusive. I can imagine that is not a nice place to be either. DH has also encouraged me to think along the lines of the slow progression so far. I am not sure if it's always fast, but I am trying to reassure myself with this a bit.

shineon - thanks for another suggestion. I haven't thought of that, but I don't actually have a tremor, just loss of motor skills. It is very helpful to think there are lots of other possibilities out there though. I am hoping nerves can suddenly become damaged without a nerve type disease or trauma (although the carpal tunnel type things all seem to go hand in hand with pain, and I have none).

cestlavie - thanks too for your comments. i hope your friend turned out to be OK in the end.

I am actually feeling better than I was this morning. I seem to fluctuate hour by hour, but the supper hour is usually the worst, when everyone gets fractious, so it's nice to be feeling a bit upbeat now. I have even eaten some of DD2's birthday cake.

I know how frightened you must be about this, but there are many less sinister things that can cause such symptoms - even dietary problems / lack of certain vitamins can cause peripheral nerve symptoms.

Thinking of you

It is the not-knowing that really is the worst. Once you know, somehow you are able to deal with it better.

We have a lot of illness in the family atm and things that I have found have helped are:

Not asking questions for which you do not have an answer. This is so important but also so very difficult. I find I literally have to say to myself - "no answer to that, so no point wasting energy on it" However much energy I waste on it, it will not change the fact that I cannot answer it. So I may as well go play lego/draughts/watch tv/do work.

Which leads onto the dreaded google. If you know when you go onto google that it cannot answer your questions because you have not had all the tests, then actually there really is no point going on to it. It will give you no answers. Once you have a diagnosis then it will be of help, but until then step away from the google.

I really really sympathise with this daignosis hell. It is so very difficult and you are in such a state of limbo. I hope the results are in the positive spectrum - I have no idea about neurological disorders. Best of best of luck.

Sympathies - if you knew the list of horrible conditions I had googled myself into, over perfectly real (but ultimately harmless) symptoms, you would know why I can relate to how you're feeling now. Its an exhausting place to be.

FWIW, I know for certain that pinched nerves (especially in the neck and shoulder area) can result in feelings of weakness and inability to manage fine motor control in the hands. Another possibility, and far more likely than MND (especially if you're spending a lot of time at a computer, which is not known for being kind to neck and shoulder nerves!).

I wish you the bestest of luck both in waiting and in getting reassurance asap - and good for you for using MN to ground/help.

Thanks again for your messages.

jmontan - yes, I read about dietary deficiencies. I think I have a pretty good diet and certainly not one that lacks B12 BUT you are right that if something as innocuous as diet can affect nerves, than lots of other harmless things surely can too.

shineon - yes, I have stopped googling. The only google I am going to do before the appointment (and I will wait till the morning of said appt) is to find out all the vocab I need in Spanish. I am in Spain and although my Spanish is fine, my neurology vocab is a bit lacking. When I googled before I read a lot about peripheral neuropathy though most of it seemed to centre around pain and sensory issues so it is interesting to read what you said about your mum. I realise that a neurologist has a bit more training than a couple of afternoons on google though, so am trying to keep reminding myself that not everyone has the 'usual' symptoms.

peas - that is very good advice and clearly what I have should have followed from the beginning!

elibean - thank you. I hope hope hope it is something like a pinched nerve, although cannot help thinking that that would cause a lot of pain? Still, as everyone has rightly pointed out, I should step away from assumptions and wait and see.

I am feeling better today. Actually I've been more upbeat since I posted this yesterday, so I think it has had a large part in improving my outlook. I am feeling a bit more: what will be will be, and worrying won't change that.

One week to wait....

I am SO sorry you are having to go through this. I have been worried about MND for the last 18 months (I am a huge hypochondriac anyway) after my best friends fiance was diagnosed with it. To be honest it sounds very unlikely with your symptoms. My friends fiance is progressing VERY slowly and he has huge muscle loss in his hands (when I first met him last year and shook his hand it was tiny and just bones and a bit of skin). It started for him with the loss of all the muscle in one hand between the forefinger and thumb (very obvious, the skin was saggy and you could see the tendons directly through it). He now needs special kitchen utensils etc. I am not trying to give you extra things to worry about (I know how the mind works) but just showing you that is is faster progressing than you are experiencing and more acute in even slow progressing patients. It is SO easy to frighten yourself but remember that GPs etc have to be careful and will send you for tests over the smallest thing nowadays so they don't get sued for missing a diagnosis. I know from experience that anxiety can even cause most of the symptoms you talk about as you are concentrating so hard on your body and you are likely to be tensing your hands and arms without even realising which causes more weakness. DO NOT go on the internet, you will search and search trying to make yourself feel better but will find one thing that makes you feel better and 20 things that scare the life out of you You will be fine. There is a one in a million chance of ever having something like this. There are honestly som many other things it is more likely to be. Don't self-diagnose yourself when you don't have all the information (I'm pretty sure training as a neurologist takes a hell of a long time).

Nikki

Nikki, thank you so much for your message. I am really sorry about your best friend's fiance and hope that things continue to progress really slowly for him.

You are so right about the mind creating symptoms; when I first noticed that the fine motor skills loss was increasing I experienced all sorts of weird pains in my hands and feet particularly in my two smallest fingers and two smallest toes. I have now decided that these are purely psychosymatic (sp?) and am trying to concentrate on hard facts. I read on the MND website that in the beginning people often notice that they have difficulty with doing every day tasks like turning keys and doing up buttons and I have fixated on this. But you are right that by now I would most likely be experiencing much more than a small loss of fine motor skills.

I am now much more able to get on with my day to day life without breaking down in tears at the slightest thing. Thank you mumsnet; thank you everyone who has written on my thread and especially those who have shared some very personal things with me.

Just checking in to let you know that I survived the 8 day wait and saw the neurologist. I have an MRI scan booked for next week and an EMG for the following (tests for nerve connections). Then I go back on 10th June for the results. It's all very scary but at least I am moving towards a diagnosis. The doctor was hopeful that it would not be anything degenerative given its slow progression so far, and said that it is possible it is just a problem with the nerve leading into my hand, though he would have expected tingling or pain too.

Thanks again to everyone who's posted so far. It is a real help. Your mind does strange things with all the waiting and it is helpful to have people remind you to keep your feet on the ground.

Have you had blood tests?I was sent to a neuro and had mri etc and they were looking for MS or a brain tumour(I found this out later).In reality my gp noticed an irregularity in my blood and it turned out I have vit b12 defieciency.I have had 6 'loading' shots and will be having a top up every 3 months.My neuro symptoms will take a while to repair if at all but there should be no further deterioration and i have a lot more energy.

noddy - no, no blood tests yet. I guess they will see what these tests show. I know the MRI is to rule out MS as he wrote that in my notes. I did read about B12 deficiency when I was in my google phase (thankfully have put that behind me for the time being). Of course, I ruled it out myself as being 'too simple' and 'not nearly panic-inducing enough'. Sigh. But I will definitely talk to him about it when I go back if they don't find anything untoward in these tests. Is it caused just by not taking in enough B12, or because your body cannot process it properly? A cursory glance at what foods contain B12 (again, in my earlier google phase) made me think I must eat enough of it. I'm really glad it's working for you. It must be such a relief to feel you are recovering.

Another possibility (although rare) is coeliac disease (wheat allergy)

My aunt had similar symptoms to you which had the doctors totally stumped for quite a while. She had MRIs, lumbar punctures, blood tests and many others until finally they found she was a coeliac(she had none of the traditional symptoms e.g. tummy problems)but apparently in a small number of cases it can cause neurological symptoms such as hemiplegia and fine weakness.

She drastically improved once she changed her diet. Might be totally off base but wanted to let you know that seemingly scary symptoms can have less scary causes.

Good luck- thinking of you.