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.

SJ, thanks. That's what I'm looking for - scary symptoms that turned out to have fairly innocent causes. It's not that I think I have everything that people post here, it's just that I find it less scary if I think that there are loads of things it could be. Then there's no point in focusing on one thing and I can more easily distract myself by thinking that I just have to wait and see.

SJ exactly the same thing happened to me! My whole body was affected and they were sure it was MS. It's so good to hear of someone else who went through the same thing. Meant in a nice way of course

Try not to worry Claricebean. I hope your results are good. I will be watching for an update

T4M - that's very interesting. Wow, you must have been very relieved to go from MS to coeliac (although am sure it has its own burdens).

Thanks for your good wishes.

I am still a bit angry that I was put through the mill of testing for serious thin gs first.My gp was shocked that they hadn't noticed it.I have bloods taken every month!I first complained of neuro syptoms 7 yrs ago so may have ahd it that long.I cannot absorb b12 it seems I eat enough of it it just isn't absorbed.A lot of small weird things have cleared up I had a rash on my chest for 3 yrs which I thought was a bra allergy and I have a fine collection of bras as a result of trying to find a non itchy one!It went overnight after the first injection unbelievable.The numbness may never fully go as I may have permanent damage but thank god thats it.Hope you get some results soon xx

Noddy have you ever been tested for Coeliac? A rash is one of the symptoms as is B12 deficiency. If you haven't already been tested it may be worth your while being so.

Gosh Claricebean, I was so relieved. It took over 2 years to diagnose me and it was only due to a lump being found in my stomach that I got referred to a Gastro Consultant. He spotted what was wrong straight away, before I had even had the tests. I was so ill, it was such a horrible time. But within 10 days of cutting out gluten I started to feel better. I honestly felt reborn, like a completely new woman. So, although eating gluten free can bi a royal pain in the backside sometimes, it is well worth it!

No I haven't What are the symptoms in general?

These are some of the more general symptoms www.coeliac.org.uk/healthcare_professionals/prevalence_and_screening/92.asp The Dermatitis herpetiformis is the rash.

My symptoms weren't typical. I wasn't underweight and I had constant constipation rather than the runs. I did have permanent bloating though. Once I got sorted I lost weight, the constipation was cured as was all the other symptoms which had been mistaken for MS. I still suffer from anaemia though, that's one thing they can't seem to sort.

It does sound like me!I think I may ask for a test.Funny enough I developed palitations and breathlessness some years ago and was diagnosed with a heart condition.I was told I'd always had it from birth but that had just become symptomatic in my 30s.I experimented with diet at the time and found wheat free really helped and virtually eliminated my symptoms at times but docs were unconvinced and so I abandoned it.Might have to re think thank you xx

There you go! I think you should ^definitely ask for a test. Having said that, if you feel better not eating wheat anyway why not go the whole hog and just cut out gluten. I also had to cut out dairy for a few months but find I'm ok with it now, as long as I don't have too much.

I hope you manage to get sorted out x

Will have a look at gluten free I am assuming its a lot of faff but anything that helps would be worth it!

Actually, I eat far more healthily now than I did before I went gluten free. I don't like the gluten free bread and biscuits etc so I just don't eat them. It did seem like a lot of faff initially and I missed bread a great deal!! I was a real bread fan! I missed vinegar on my chips too, malt vinegar contains gluten so that had to go! I find it quite easy now but I suppose that's because I'm used to it. As I see it now, I may not be able to eat anything that contains gluten but at least I have my health. It's a fair trade off

Another gluten + neurology connection here: for 10 years we had been told this was progressive with no cure and I temporarily gave up looking. In the end I found out about this possible connection from another forum, challenged local drs, found top class neuro-gluten expert (thank God and internet) and turned my ds life around.
These cases are not as rare as many drs think and there are tons of proper medical publications around.
It's not the fact that one eats all the good foods and even takes vitamins, becuase the crux is that if the gut is damaged then it won't be able to absorb any of it.
When I found out that severe damage, gut or neurological, may be irreversible, well, that alone has been an incentive to stay away from gluten (me too, although my symptoms were very minor and very vague).

Just updating. I had my MRI yesterday. I get the results tomorrow (though here, they use patients as a kind of internal mail system in that you are personally responsible for collecting your notes from one office and delivering them to the next, so am not sure whether this will just be a letter to my neuro consultant or something in layman's terms that I can understand). I see the consultant again on 10th June. I have an EMG and a PUM ? or PVM ? (not sure and the abbreviation may well be different in Spanish) next week.

Interesting to hear the gluten stories. I will bear these in mind to talk to the consultant depending on the results I get.

Am somehow managing to function in a kind of parallel universe for every day things.

Good luck please keep us updated.Thank goodness you don't have to wait too long for the results that is sometimes the worst bit.I am about to try the gluten free route in the hope of easing my neuro symptoms

Hope you start to get some answers soon.

If you get stuck in the panic again, please look into CBT. Not sure if it's available in Spain, but I had a long haul to a diagnosis for a neurological problem last year (it turned out to be better than the alternatives ) and kept plummeting into 'catastrophic thinking' (shrink's term). Anyway the CBT helped me to get some perspective on it.

I found it really helpful/confidence-boosting to break out of all the doomsday scenarios which really don't get you anywhere.

Good luck with the gluten free challenge Noddy, I hope you find it helps you. I wondered if you have seen this thread www.mumsnet.com/Talk/allergies/753829-Gluten-Free-Food-from-supermarkets it might be useful to you.

A quick update before the school run for those kind enough to have shown an interest in my story. I got the MRI results back and they were fine. I was happy to rule out MS and Parkinsons, although my biggest fear has always been MND, which also fits better with my symptoms, so although getting a clear MRI was great, it didn't reassure me fully.

I went for my EMG last week and I should get the results this afternoon. This is the big test for me as (1) it would show something if it's MND and (2) I am expecting it to show something as this is where I am displaying symptoms.

I am terrified, of course. I am seeing the consultant on Wednesday, so not even sure whether I will be able to understand anything in the results or not (they will just give me an envelope with the results in to take to the consultant). While having the EMG, the doctor said he would be able to give me the results then and there, but then changed his mind and said he wanted to analyse them over the weekend, so of course my mind went into overdrive thinking he's found something.

Ah well, not long now. Sorry if the above makes no sense. It's just a stream of consciousness really - just trying to get it out of my system a bit before collecting the DC. My hand has felt very weak all weekend and I have had cramps in my arms too, but this may all be pyschosamtic (sp?).

Anyhoo...if you got this far, keep your fingers crossed for me. Thank you.

here is an article for you that might help

gluten-neuro connection

Thanks for the update CB. I will be watching out for the next one I do hope you get some answers.

Hi claricebean - glad to hear your results so far have been negative and hope that the EMG results are ok too.

Just to echo what others have said - I have also been tested for MS and MND { MRI and EMG etc } as I have persistent pins and needles in my hands and feet and numbness and problems gripping with my right hand. My doctor tested me twice over a 3 month period for changes related to MND as he said that it would be apparent in that time period, so hopefully from the time frame you describe, as others have mentioned, if it was MND something more obvious would have developed.

I know what a worry these neurological symptoms are and that it is only getting your test results that will really reassure you.

Thanks for your messages. Still waiting for DH to finish work and collect the results for me - argh......... What a day for him to be working late.

Thanks for the article, nightcat, will go and read that now.

Winetime - wow, you must have been so worried, especially going through the tests twice. Did the EMG show up any nerve damage connected with your symptoms even though it wasn't MND or MS related? How are you now? I am trying to focus on the time pattern.

I am usually a 'glass half full' kinda gal, but this has knocked me for six really and my optimism has just evaporated. I guess that is the downside of motherhood - every day you are surrounded by what you have to lose. I have promised myself that if I get through this I will NEVER moan about my health again (and that includes piles!) and I will dedicate some time to raising money for the MND association.

Fingers still firmly crossed here.

EMG shows a slowing down in the peroneal nerve conduction of the right leg.

There are lots of numbers for both legs and arms, and different waves?? I guess I will have to wait for the consultant to decipher for me.

Am very confused. Hand seems fine. Am taking it as a good sign... I think.

I see the consultant on Wednesday. Off to discuss with DH.