Status
Not open for further replies.

worried2014

Member
Joined
Dec 19, 2014
Messages
23
Reason
Other
Country
UK
State
Kent
City
Sittingbourne
Hi, I feel very awkward writing on here about something which I am unlikely to have, but that I am convinced I have the early symptoms of, to people who are already affected by these terrible diseases. I am not sure what I am a hoping for, or aim to achieve as I know that diagnosis will only be made after extensive testing, and yet here I am anyway. I have read the stickies and many other threads, but cannot seem to get past the gnawing feeling that I have an MND. I hope that my post does not offend anyone affected with any MND.

Basically, long story short, I became a new father in January, and found out that my dad had dementia. So yes, high levels of stress could obviously play a part in my issues. Noticed that I was getting headaches and a very stiff neck in March. Saw GP, advised stress related, refereed to physio.

Physio undertaken throughout summer, intermittently eased symptoms. In June/ July I notice that my left eye would twitch quite often, sometimes for long periods ( days ), other times for shorter durations. Occasionally right eye was affected. Discharged from physio in September. Noticed in October that I was starting to get very tired in the afternoons, and that walking up stairs made my legs ache far more than I had noticed before. Also, very strange but when driving it felt like my big toe was sticking through a hole in my sock, although obviously there wasn't any hole. Noticed I was occasionally dropping things, tho I cant be sure if this was any more than normal!

In November I noticed that my left index finger was twitching. Not a little bit, but quite dramatic movements left and right. Also noticed that when I was going to sleep I would always wake up with a very dead right arm, no matter what position I slept in. Then felt as if there was a resistance when opening / closing my fingers into a fist. Went back to GP, he advised that he thought problems were still related to my neck. Referred for an xray.

Whilst waiting for the xray apt I began to experience some pain behind my right eye, and also seemed to me that bright things seemed brighter in my right eye than left. I visited optician, how conducted normal tests and found that my vision had deteriated, albeit very slightly, but that she couldn't find any issues with colour perception. ( I still don't agree with this, as it is quite clear to me that this isn't the case! ) However she did ask as to whether anyone had ever told me that I had unequal pupils, to which I replied no. ( I have worn glasses and contacts since I was 10 and I am now 35, so clearly this would have come up at some point ). Based upon this she made a referral letter back to my GP. I had xray the next day.

Was called back by GP, Xray showed evidence of cervical spondylosis. He asked how I was feeling, advised him that I was worried and that both my arms were also feeling weaker. Not only that, but my calves, particularly the left one, had started to twitch as well, He said that again this is all prob due to neck issue, but due to optician referral re eye he was going to refer me to see a neurologist. Appointment is for February, I have tried to pull forward and have been put on a cancellation list.


Since the doctors appointment I have noticed that I have visible atrophy of the dorsal muscle between my left thumb and index finger, and that my pincer grip of these two appendages is far weaker than that of my right hand. That being said, the finger which was twitching constantly seems to have stopped, and I still have use of it in terms of mobility etc. However right hand still seems to be stiffer than I remember, particularly when opening and closing fingers.

Furthermore I have now noticed that my biceps are twitching intermittently, and that my left arm aches and my right shoulder aches. I also have very occasional cramp type feelings in both arms, and that the calf muscles in my left leg are twitching almost non stop, and that it has spread to my left foot. Foot seems to ache when walking on it. I am also starting to get the odd word wrong when speaking. Hands also seem to ache or experience mild pain feelings, particularly from wrist though to fingers.


My neck seems to not be so stiff, but I notice that my shoulders are often in the tensed up position, and I have to consciously relax them. I have also noticed that I occasionally twitch in other places, abdomen, arm, face and head, although nowhere near as much as my calf. One thing I have noticed is that when I get into bed the twitches seem worse, but when I wake up they seem to be gone, for a period of time. Often they come back once I start driving to work.

Bit crazy but I also seem to have been a bit more emotional this year, although this could stem from becoming a dad and my dads situation, as well as worrying about my health!

Sorry for the long post, I didn't mean to write that much but once I started I couldn't seem to stop. Maybe unburdening as my wife doesn't really want to talk about it!

As I said from the outset, I am not sure what I am hoping for by posting here, but any helpful comments or opinions will be greatly appreciated.

Thanks
 
Sorry, I forgot to say that I know eyesight is not a symptom of ALS, although I don't know if unequal pupils. Maybe they are completely unrelated issues!
 
I dont want to seem to be minimizing your fears, but you are a new dad with an ill father. You are under incredible stress. How is your sleep? Anxiety? How much caffeine do you consume? Do you get exercise? Stress, poor sleep,anxiety, and excessive caffeine can cause twitching in many places. Poor sleep can bring on light sensitivity and migraines. As for your muscle atrophy and neck, those can only be accurately assessed by a neurologist. Sorry I cant be more help, but I am not a doctor. Calling the neuro back and asking about an earlier appointment may be agood idea. Sometimes the schedule opens outside of cancellations. This may help relieve your anxiety.
 
Worried, I'll chime in with Gooseberry, my opinion, of the 962 words you posted the ones that really brought somewhat of an indication to many of your symptoms are...

("Bit crazy but I also seem to have been a bit more emotional this year, although this could stem from becoming a dad and my dads situation, as well as worrying about my health!")

Do some research to the insidious symptoms of anxiety and stress until your Neuro appointment. Give just as much belief to that info as all the other you've read. Then... give the internet a break.
 
I am not a expert on ALS but from little I do know your symptoms don't appear to be any of them. I do know quite a bit about anxiety. It looks like alot of your symptoms could definitely fall under it. I'm not saying that you don't have another medical condition on top of that. Please check with your neuro and see if you can get in earlier. Best of luck to you.
 
Many thanks for your replies, I would firstly like to apologise for the length of my initial post, it must be very difficult for anyone with an MND to both read and respond to that kind of essay!

I hear what you are saying about anxiety, I do hope that this turns out to be the cause. I was happy to take this as the reason for the initial finger twitch, but then the unequal pupil thing came up and freaked me out!

What's worrying me today is that the twitching is definitely localised to three places, my left calf and foot, outside and thenar area of right hand, and left dorsal hand muscle. Cramps seemed to come on late yesterday in both my left calf and foot.

Weirdly my face has started to feel tight and twitchy today as well, and when I open my mouth wide I get a heavy twitch above the mouth to the left of the nose, which actually moves my lips! I am not able to tell if my tongue is twitching like a tongue normally would so trying not to look at that!

I do need to stop looking on google tho, it's clearly not helping matters! I very much hope that it all turns out to be nothing but stress and anxiety, and have contacted the neuro dept and I have been put on a cancellation reserve list in the hope of it being pulled forward. Thank you all for your time, I will do the courtesy of keeping you updated following the appointment. My thoughts are with everyone affected by MNDa I anyway, especially at this time of year.
 
Hello again, I hope you had as enjoyable holiday period as possible . I am still waiting for an earlier neuro appointment but no joy as yet. However I am now very concerned as it is quite evident that my left calf and foot, along with my left hand, are showing visible signs of muscle wastage, so much so that other people have confirmed that they can see it. Both legs seem weak, and I struggle to hold anything of weight with my right arm, although the issue seems to stem from my shoulder. Other widespread twitching is evident, although I only really worry about those which are constant, ie my left calf.

I understand that no one can diagnose anything online, but I was wondering as to whether anyone on here became aware of any other illness or issues during whilst awaiting diagnosis which can cause twitching and muscle wastage, as according to dr google the only thing that does both of these things is als!? Thank you in advance for your assistance.
 
Stop. Please stop.
 
Read the sticky. There is a long list of what it was when it was not ALS
 
Sorry, I did read the stickies for my first post but hadn't checked them since, and forgot about the list of other potential illnesses etc. Dr Google seems to only want to tell people about als when you type fasics and atrophy! This was laziness on my part, please accept my apologies.
 
Symptoms seemed to be spreading quite quickly so I went back to my GP. He acknowledged and agreed that both first interrossei, left calf and left foot showed signs of atrophy, and that calf and left foot were showing substantial fasics. He tested a few reflexes, said fairly brisk and that I have a positive Hoffmans reflex. He without prompting mentioned possibility of MND, amongst other things. I was sent to have blood tests taken for pretty much everything on the list, haven't had results back yet. My head MRI is scheduled for the 7/2, with my neurologist appointment on 12/2 as they have been unable to get me in any sooner. Now even more freaked out than previously, but no I can do nothing but wait. And based upon the other accounts I have read in here, this could be the beginnings a very long diagnosis process.
 
Do you know which Neurologist you are seeing? I too am a Kent 'lass' and it does have some very good Neuro's in this area, surprised you have got appointments so soon though, I waited 8 weeks for the MRI and 4 months for Neuro appointment
 
Hi Janbrit, thank you for your response.
Firstly let me express my sympathies to see you have been diagnosed, I cant imagine what that must be like, and obviously hope I never have too.
I have an appointment to see Dr Memon at Medway Hospital. I don't think he is a neuromuscular specialist though, I take it based upon his findings he will decide if its warrants a referral to one? Im not really sire how it works.
My GP made the booking directly through their online portal, I think it was in early December, although I cant remember when exactly. I thought 2 months was a long time, but going upon your comments it seems I was fortunate!
I luckily(?!) had the contact details for the consultants secretary, as it is the DR who is seeing my dad for his dementia, so I was able to hassle them and the consultant took the time to read through the GPs referral and arranged for me to have the MRi prior to my appointment with him. Hopefully he should have the results of that for my appointment on the 12/2.
Whereabouts in kent are you?
 
worried2014, I am also a lurker on here so I feel for you. Thinking of ALS as any sort of possibility is daunting.

I'm also of the mind that the body and mind are a powerful duo, even in my case. So I'll just chime in with an exercise I do, that I learned from being in the mental health field.

ACT AS IF.

ACT AS IF is a good way to handle decision making, but also works for things that you have no control over. The way to go about it is to go on and get a few good days of 'ACTING AS IT I HAVE ALS.' Go on and knock yourself out with it...imagine all the horrors, what you would tell people, how you would feel physically, emotionally, etc. (I would also suggest DO NOT POST DURING THESE TIMES. DO NOT GET ON DR. GOOGLE.) Just give yourself 48 full hours of acting as if you have been diagnosed. Drown in it. Write down your thoughts and your observation of your symptoms (this is important).

Then...Spend the NEXT 48 hours acting as if you have been completely cleared of ALS. Absolutely without a doubt DO NOT HAVE IT. Ignore your hand...don't look for atrophy or twitching anywhere. If it happens, ignore it. Carry something heavy on your weak side. Stretch your body, go for a walk. And don't let me see you sticking your tongue out in the mirror and seeing it jump around (cuz it will!). Again, write down your thoughts and your observation of your symptoms. Important.

Then compare what you have written. Which ACT AS IF was more successful? Were you better able to act as if you HAVE ALS or DON'T HAVE ALS? This should be an insight into how your mind may be affecting your body. Then, if you are feeling brave, take the chance to act as if you do not have ALS until all the tests are done. You will probably end up very surprised at your EMG results, despite all the activity you are experiencing. Act as if...

The truth right now is you only have Dr. Google saying you might have ALS. There are so so many things that can be causing your (my?!) symptoms that are not fatal. Sometimes stress sneaks in a secret death wish, my friend. That does not mean you are dying.
 
Hi everyone,

Im back with a question I am hoping those with some more specific scientific knowledge can answer. I only ask here as my GP is on holiday until Monday. Rest assured I will of course be asking him upon his return! I had some blood tests done last week which he referred me to based upon the symptoms I have been having. I contacted the surgery yesterday and asked if the results were back, was told yes but that the doctor hadn't assessed them, and wouldn't until Monday. Knowing my neuro apt is just under 2 weeks away I asked if I could collect a copy of the results, with the view of taking them with me. I did, and the comments "abnormal" appear on 5 of the items:

Calcium 2.07 ( should be 2.2-2.6 )
Phosphate 0.63 ( should be 0.8-1.5)
ALT 107 ( should be 9-55 )
Glucose 7.2 ( should be 3.3-5.5)
Mean Platelet Volume 10.3 ( should be 7-10.0 )

I have obviously googled tests and know their potential individual causes, but do any of these mean anything to anyone on here in relation to the symptoms I am suffering which prompted me to seek out this forum; either if it turned out to be MND or something else entirely? I wont go through my symptoms again, as they are all detailed in previous posts, with the exception of a noticeable increase in the lack of strength in my left foot, so much so that I have "rolled" over on 4 times in the past week.

Thanks in advance
 
Status
Not open for further replies.
Back
Top