View Full Version : im convinced its that
please any feed back would be great
im totally convinced i have motor nurones now, i cant stop reading about it, im so scared got my mri on monday, for something else i have gone from feeling i have had everything. im driving everyone mad, im so fed up, i cant stop thinking all the time i have it, because of my muscle twitches, and i keep pulling my muscles in my neck, my breathing fells bad on and off, feels like i cant get enough air, and getting a warm feeling in my ankle, i have been like this 8 weeks now, its all i can think about am i goiing crazy???????
i just hope i dont have it, i dont know what i would do, i never used to be scared i dont know whats come over me, i have changed totally, im not really sleeping also like doing a random gasp, of breath, can it me stress im 150% its MND
itoldyouiwasill
11-12-08, 20:29
MND/ALS is defined by clinical objective muscle weakness. MND/ALS has very very little to do with muscular twitching....yes, a small number of sufferers do start to find that their muscles twitch but this is quite late on in the progression of the disease and by then you would have severe muscle weakness and atrophy. Muscle twitching in such circumstances would also start localised and would spread to other muscles on an ongoing basis...twitching starting in different muscle groups at once would be in no way indicative of MND/ALS. The twitching of the disease is the dead muscle trying to fire itself back to life....you do not have dead muscles therefore the twitching you are experiencing cannot be caused by MND/ALS.
MND/ALS does not have sensory symptoms...it is a disease that is caused by the death of the horn cells in the muscle and leads only to weakness...not a wishy washy sense of weakness but clear 'ooh, I can't get out of bed today' sort of weakness. The warm feeling you have in the ankle which sounds like parathesia is sensory and therefore cannot be related to MND/ALS.
Not one thing in your post would remotly suggest you have MND/ALS but all your sensations do sound similar do the sensations that thousands of us with anxiety experience.
I would suggest you have anxiety that is being made worse with an illogical interpretation of the sensations and a fixation on MND/ALS...as you probably know this is very common.
Hi Loucas, sorry to hear you are so stressed out but I am sure once you have read what Itoldyouiwasill has posted that it will put your mind at rest a bit until you go on Monday. It is the most awful feeling being fixated on a particular illness, and how I wish it was easy to calm those fears, but we who suffer from anxiety need a site like this where we can get help and sympathy in our times of need. I cannot add anything to the last post, as it is a very kinowledgeable and helpful post, but just send you hugs to see you through the weekend:hugs:
thank you so much for the message you made me feel a alot better
i know great post he really knows his stuff, he has really been helpfull, then its waiting for the results, its doing my head in i dont want to have a s***y christmas, thanks for your message,
itoldyouiwasill
12-12-08, 10:47
thank you so much for the message you made me feel a alot better
No problem.
As I said....you are well so CHOOSE to be well.
Glad that you feel a little happier after reading *Itoldyouiwasill's posts and I am sure from your symptoms that it is due to stress, but that won't convince you till you get your scan results. I do hope that they can give you the results before Christmas, which should be a possibility and would be great for you so that you could relax at Christmas. I have had a pulled muscle in my neck for 5 weeks now, it went away for 3 days then came back again, it just happens and I hate the cold weather as I know I tense up when I am outside. Let us know how you get on on Monday:yesyes:
I share your fears and anxieties 100% and wish you nothing but the best. I've been twitching all over for months and have aches and pains and perceived weakness. Here's hoping we can both find the comfort we need soon.
Hi,
I have just been through EXACTLY what you are going through right now. I began having weak feelings in my hands and then weak legs. I felt that I could not do fine movements in my hands and picking small things felt really strange. A month later I started getting twitches, and then I started to get cramps in my calves and feet. My hands have been weak and shaky. THEN I started to have issues with my speech.
Okay, so I was like you... 100% that I had an MND.
I was terrified to go to the doctors and waited. Then the twitches started to be more in my hands, and also my lips and face. I couldn't take the worry anymore and went to my doctor. He did not want to give me any exam as he is not a neurologist and suggested that I did...
Well, after 4 months of worry I went to a neurologist on Monday and he listened very patiently to my symptoms (a lot of different symptoms that seem very scary) and he gave me a neurological exam. I did not have any clinical weakness and all my reflexes were normal (by the way, don't check your own as I was banging my knees and they would really jump and I was convinced that I had hyper-reflexes, but apparently if you hit them too hard they will do this).
He told me there that he did not think that I had anything serious, (even with my feeling of weakness, speech issues and such even though to me all my symptoms pointed to the worst), but wanted me to have an EMG/NCV test.
I had the test yesterday on my right arm, right leg, and part of my left leg. Absolutely normal!!! He said at this point that there was no point doing any more as they were so clean. I asked him if I had bulbar onset, would they have shown, so he asked if I wanted him to stick a needle in my tongue, so I said yes... (didn't hurt)... clean!!!
He specialises in MND and told me that I absolutely don't have it. He did not even think I needed to come back for any other tests or retesting at a later date. He said that anxiety can cause all sorts of symptoms, and I have definitely been feeling that.
It is not twitches that are bad, it is the company they keep (CLINICAL weakness and an abnormal EMG - (and just to note that no one can feel the abnormalities so don't start thinking that you are feeling other things).
From your description, you are absolutely fine and tests from the neurologist will confirm this I am sure. People who get twitches get easily fatigued muscles, buzzing, pulsing, cramps, etc. etc. If you search for aboutbfs then you will find other people that have benign twitches and you will be shocked at how they feel and have gone through all the feelings that you are having... but nothing helps like a visit to a doctor... :)
Take Care and if you need to send me a private message, please do!!! You can also see my posts during my issues under 'I'm really freaking out... (http://www.nomorepanic.co.uk/showthread.php?t=38544)'
Glad that you feel a little happier after reading *Itoldyouiwasill's posts and I am sure from your symptoms that it is due to stress, but that won't convince you till you get your scan results. I do hope that they can give you the results before Christmas, which should be a possibility and would be great for you so that you could relax at Christmas. I have had a pulled muscle in my neck for 5 weeks now, it went away for 3 days then came back again, it just happens and I hate the cold weather as I know I tense up when I am outside. Let us know how you get on on Monday:yesyes:
i will thank you for your messaeges,
Luke,
I share your fears and anxieties 100% and wish you nothing but the best. I've been twitching all over for months and have aches and pains and perceived weakness. Here's hoping we can both find the comfort we need soon.
its driving me mad i hope so, hope you feel better 2,
Luke,
itoldyouiwasill
13-12-08, 11:22
its driving me mad i hope so, hope you feel better 2,
Luke,
What is it that is driving you mad though? Is it the twitches or is it the constant worry over what you are interpreting these twtiches etc as meaning?
At this moment in time you have little power over the former but even though you don't realise it you have all the power over the latter. Fear and anxiety always exist when we try to exert ourselves in things we cannot control....look at the area you can control and concentrate on this as best you can.
What is it that is driving you mad though? Is it the twitches or is it the constant worry over what you are interpreting these twtiches etc as meaning?
At this moment in time you have little power over the former but even though you don't realise it you have all the power over the latter. Fear and anxiety always exist when we try to exert ourselves in things we cannot control....look at the area you can control and concentrate on this as best you can.
im trying to sort myself out, honestly, its the worry of not knowing whats wrong, not knowing what the twitches are, not knowing what the warm feeling in my leg is,not knowing why sometimes i cant breath randomly, or feel like i cant, worring about my lips tingling , worrying if im going crazy,worring what there gonna find in the mri monday, worring why i feel the need to check myself constanly, and my pulse every 2 mins, consious about my body how my hands feet legs arms feel if im going weak anywhere, and why i think im dying,worried to go to sleep incase i dont wake up, and think i have every disease on earth lol, worring why i keep pulling my muscles in my neck in my sleep, worring ahy all my joints are starting to click, im worring about everything i know its not rational, its stupid but i cant help it, its weird, i was never like this, if a doctor tells me i dont have als mnd ms a brain tumor any cancer, have a chest x ray, and a neck x ray, tells me exactly what the twitches are and tell me its 1 million percent stress i will be ok, but im sure that wont happen,
Luke,
agent orange
13-12-08, 18:12
Luke, let me say this. I have read your post and I too think you are suffering from anxiety. Twitches are very common; they can be to do with tiredness, stress/anxiety. I have had them for over five years and yes I too am like you and I worry that something is wrong, but I have been told a thousand times that it is nothing to worry about. I have achey legs,arms etc and I have had these for a few years too and I too have had an MRI scan on my brain, only to reveal nothing, and I suffer from the most excruitating health anxiety with many physical symptoms. Perhaps you will get through this soon, I hope you do. I have been diagnosed with USD (a somatoform disorder that coexists with hypochondriacal tendencies), you can check earlier threads by me if you are interested. Please do not fear (easier said than done) the actual MRI scan is not too bad, a bit noisy, but over quite quickly if it is a brain scan.
I was looking for M.S, but no signs. Take something to calm you before you go, and I closed my eyes, that helped for me.
Take care and good luck.
Luke, let me say this. I have read your post and I too think you are suffering from anxiety. Twitches are very common; they can be to do with tiredness, stress/anxiety. I have had them for over five years and yes I too am like you and I worry that something is wrong, but I have been told a thousand times that it is nothing to worry about. I have achey legs,arms etc and I have had these for a few years too and I too have had an MRI scan on my brain, only to reveal nothing, and I suffer from the most excruitating health anxiety with many physical symptoms. Perhaps you will get through this soon, I hope you do. I have been diagnosed with USD (a somatoform disorder that coexists with hypochondriacal tendencies), you can check earlier threads by me if you are interested. Please do not fear (easier said than done) the actual MRI scan is not too bad, a bit noisy, but over quite quickly if it is a brain scan.
I was looking for M.S, but no signs. Take something to calm you before you go, and I closed my eyes, that helped for me.
Take care and good luck.
thank you agent orange, im not scared of the machine im prepeared to do ant test si find out whats wrong, im not getting twiches as bad but my breathing is weird its the hardest thing to describe, i can breath, on not taking any more breaths than normal been happening a few months now, it feels like someone has there hands round my throat slighty, so my lips feel a tiny tiny bit tingley, its a weird feeling, i am tired not sleeping good as soon as i open my eyes, im thinking of my health, i belive i am being hypercondriact maybe i have ocd of my health, i dont know whats going on, thanks for the message, hope you feel better,
Luke
agent orange
13-12-08, 19:17
Luke, I think your breathing is to down to not breathing properly perhaps?
Anxiety is an awful thing and Ifind it difficult to understand it but the mind is very powerful and does present psychological problems into physical symptoms. Whatever you do, do not google. I have had these symptoms for many years, plus others I am just trying to cope with them like everyone else on this site.
Take care.
Tony aka Agent Orange
itoldyouiwasill
13-12-08, 19:40
thank you agent orange, im not scared of the machine im prepeared to do ant test si find out whats wrong, im not getting twiches as bad but my breathing is weird its the hardest thing to describe, i can breath, on not taking any more breaths than normal been happening a few months now, it feels like someone has there hands round my throat slighty, so my lips feel a tiny tiny bit tingley, its a weird feeling, i am tired not sleeping good as soon as i open my eyes, im thinking of my health, i belive i am being hypercondriact maybe i have ocd of my health, i dont know whats going on, thanks for the message, hope you feel better,
Luke
Tests will very often cause you more worry than you think....as you know you are worried about ALS and cancer and therefore if you where to have a clean EMG (for ALS) in all likelyhood you would then want tests for different cancers etc etc....believe me, it is a never ending loop.
The hard part is that there in no test for anxiety. There comes a point when you have to take a massive leap of faith and believe and accept that the symptoms are benign and once you remove the fear from the symptoms things very often improve.
I do not know your situation and the circumstances as to how all this started for you but the point agent orange made about somatisation is very salient...this could be an avenue worth exploring.
I agree about NOT Googling but it is worth looking at information that relates to anxiety (both mental and physical) and concepts such as somatisation etc.
good luck
edit: The breathing issue. This is so common with anxiety and a faulty breathing pattern can cause a whole load of physical sensationson it's own. Look into overbreathing and hyperventilation. The weird thing is that we are not aware our breathing pattern is out of synch and it quickly becomes a chronic problem.
agent orange
13-12-08, 20:37
I so agree with itoldyouiwasill, I too like everyone else, need to take a leap of faith. You also need to do this Luke. I read that once you have anxiety, it actually can take a while for the body to calm down, but if you are worrying about illness or other things, it is then not surprising that your body is in fatigue. My body is doing this and I see the doctor far too many times and my doctor says that there is nothing really wrong except undifferentiated somatoform disorder and anxiety. It is a good thing not to doctor hop, but to keep with one doctor who you can trust ( I have done this ). Check out the Somatoform disorders they are quite interesting, but you must be diagnosed by a mental health doctor. Please do not google other things. If you want to im me please do.
Take care,
Tony.
itoldyouiwasill
13-12-08, 21:41
I so agree with itoldyouiwasill, I too like everyone else, need to take a leap of faith. You also need to do this Luke. I read that once you have anxiety, it actually can take a while for the body to calm down, but if you are worrying about illness or other things, it is then not surprising that your body is in fatigue. My body is doing this and I see the doctor far too many times and my doctor says that there is nothing really wrong except undifferentiated somatoform disorder and anxiety. It is a good thing not to doctor hop, but to keep with one doctor who you can trust ( I have done this ). Check out the Somatoform disorders they are quite interesting, but you must be diagnosed by a mental health doctor. Please do not google other things. If you want to im me please do.
Take care,
Tony.
Yes, we all have a traditional view that anxiety is a mental condition but when mental anxiety becomes chronic it will all too often become physical. I prescribe to the rain barrel view of anxiety. What basically happens is that over a period of years we employ bad anxiety management and out anxiety threshold is slowly increasing...in other words the rain barrel is filling up! Now, because this happens so gradually we are actually unaware that our anxiety threshold is increasing...if we where able to tranfer our anxiety level onto somebody with a normal level thoughit will feel incredibly intense to them.
So, we keep filling the rain barrel up and all the while our body adjusts and we just fail to realise we are on a collision course. Now, what generally happens is that we then experience a stressor (can be good or bad) and our anxiety threshold responds by increasing but today is the day that the barrel is full!! Basically, this is the point that our emotional anxiety HAS to become physical..the water is pouring over the top and it is the same with our anxiety...we think that this is all 'out of the blue' but the reallity is that years and years of poor stress and anxiety management have finally told.
At this point it is incredibly common for physical anxiety to manifest itself as neurological sensations. This is because we have, in effect, fatigued our central, periphiral and sympathic nervous systems and this causes a whole host of wierd and wonderful neuro sensations. The problem now is that instead of thinking that we need to allow our bodies and minds time to recover we fall into the trap of literally pouring petrol on the anxiety fire and we analyse these symptoms and convince ourselves we have MS, ALS or whatever is your disease of choice...you are now in the health anxiety loop.
One of the things you here time and time again is 'how can this be anxiety if I'm no longer anxious'? The thing is that even though we may have turned the tap off the barell is still full. Another useful anology is to think of an overweight person...years and years of a poor diet will have made them overweight, if they decide to go on a diet after a week of eating the healthiest and best food ever they are still going to be overweight...it is the same with anxiety, we fall into the trap of thinking that it is all about what we are thinking at the moment...this is our biggest mistake, once anxiety has become physical this indicates it is a chronic condition and therefore it can take us just as long to correct the problem as it took to get into the state we are at. The sooner we stop dumping anxiety on top of anxiety is the point that recovery will slowly start but because we fail to see immediate results we doubt everything and once again employ all those old stalwarts such as over catastrophising, black or white thinking etc etc that are going to keep us locked in the loop.
Hope this helps.
Yes, we all have a traditional view that anxiety is a mental condition but when mental anxiety becomes chronic it will all too often become physical. I prescribe to the rain barrel view of anxiety. What basically happens is that over a period of years we employ bad anxiety management and out anxiety threshold is slowly increasing...in other words the rain barrel is filling up! Now, because this happens so gradually we are actually unaware that our anxiety threshold is increasing...if we where able to tranfer our anxiety level onto somebody with a normal level thoughit will feel incredibly intense to them.
So, we keep filling the rain barrel up and all the while our body adjusts and we just fail to realise we are on a collision course. Now, what generally happens is that we then experience a stressor (can be good or bad) and our anxiety threshold responds by increasing but today is the day that the barrel is full!! Basically, this is the point that our emotional anxiety HAS to become physical..the water is pouring over the top and it is the same with our anxiety...we think that this is all 'out of the blue' but the reallity is that years and years of poor stress and anxiety management have finally told.
At this point it is incredibly common for physical anxiety to manifest itself as neurological sensations. This is because we have, in effect, fatigued our central, periphiral and sympathic nervous systems and this causes a whole host of wierd and wonderful neuro sensations. The problem now is that instead of thinking that we need to allow our bodies and minds time to recover we fall into the trap of literally pouring petrol on the anxiety fire and we analyse these symptoms and convince ourselves we have MS, ALS or whatever is your disease of choice...you are now in the health anxiety loop.
One of the things you here time and time again is 'how can this be anxiety if I'm no longer anxious'? The thing is that even though we may have turned the tap off the barell is still full. Another useful anology is to think of an overweight person...years and years of a poor diet will have made them overweight, if they decide to go on a diet after a week of eating the healthiest and best food ever they are still going to be overweight...it is the same with anxiety, we fall into the trap of thinking that it is all about what we are thinking at the moment...this is our biggest mistake, once anxiety has become physical this indicates it is a chronic condition and therefore it can take us just as long to correct the problem as it took to get into the state we are at. The sooner we stop dumping anxiety on top of anxiety is the point that recovery will slowly start but because we fail to see immediate results we doubt everything and once again employ all those old stalwarts such as over catastrophising, black or white thinking etc etc that are going to keep us locked in the loop.
Hope this helps.
your advice always helps, my only concern is the breathing thing, i dont think i have panicked like where i have been OMG ring an ambulance driving to a and e has crossed my mind, though, your right in what you say i know its logical and prob all stress, my mind just plays on its own, i am physically feeling it, its just really hard to put this on stress, when i dont feel panic staions im obviously anxious, about my heatlh, but its hard to accept my mum is a worrier she had a breakdown when i was 15, she is ok now, but she could not go out for a long time, i work 60 hours a week, off work now till the 28th, just want my life back want to wake up and not have any symptoms and just feel ok, thanks for all your advice guys your really helping,
I so agree with itoldyouiwasill, I too like everyone else, need to take a leap of faith. You also need to do this Luke. I read that once you have anxiety, it actually can take a while for the body to calm down, but if you are worrying about illness or other things, it is then not surprising that your body is in fatigue. My body is doing this and I see the doctor far too many times and my doctor says that there is nothing really wrong except undifferentiated somatoform disorder and anxiety. It is a good thing not to doctor hop, but to keep with one doctor who you can trust ( I have done this ). Check out the Somatoform disorders they are quite interesting, but you must be diagnosed by a mental health doctor. Please do not google other things. If you want to im me please do.
Take care,
Tony.
very interesting the Somatoform disorders, im off to see someone on the 22nd see what they come up with
, thanks for all your messages Tony you been a big help,
didnt sleep at all last nite was waking every hour for no reason at all, my neck is still hurting pulled it from an old injury when i was at school it just seems weaker recently, im worried about it it goes all up my neck on the right hand side near my lymph node, worring about other things now,
agent orange
14-12-08, 19:46
Luke. Unfortunatley our bodies are never free of symptoms;bodies are mean't to feel things, it shows us we are living; but yes when you suffer from anxiety, the whole bodies whirls into strange sensations and yes I have and am still having sensations. I wholeheartedly agree with ItoldyouIwasill, about his last post. Take Kalms for sleeping, they're brilliant. You will always find support here. Take care.
Tony
had the mri today, bit nervous of the results which i get when i see the nuro on the 22nd, they didnt give me a dye, and they said look if it was anything really bad we would not let you go, which seemed strange, im still thinking of als mnd, i was twiching while i was under there, my muscle above my knee in the middle seems hollow on both legs the one around the sides are ok, but about 6 inches above the tip of my knee there seems to be like a tear drop around the 2 muscles not sure if this is normal, have not noticed before, they got 2 doctors to look at the pictures before i came out of the machine, dont know if this is normal either, thanks for all your advice everyone, you have helped alot,
agent orange
15-12-08, 19:04
Luke, sorry to be vague, but which part of the body did you have looked at?
I am sure it will all be very negative.
tony.
Luke, sorry to be vague, but which part of the body did you have looked at?
I am sure it will all be very negative.
tony.
my head Tony,
agent orange
15-12-08, 20:06
I really do not think you have anything to worry about, I trust that you will try to keep calm until you have the results. IM if you want. Good Luck and take care.
Tony
still really worried now with this breathing i will be fine all day then about 6 o clock i will start to think about it, i have noticed a lump where my ribs join it sticks out a little is this normal,???? and like maybe 2 times a day i will like gasp for a breath on my own like before you need to sneeze im finding hard to say this is stress, im convinced there is something else still getting the twitches 2,
You are just really stressed. I had my EMG last week and I am still having issues with speech and swallowing even though I know the doctor wasn't concerned. Stress can do all sorts of things.
They probably had doctors looking at your MRI as they knew how stressed you were. The fact that the tech told you that if you had anything serious that would not let you go ... well they let you go.
Please don't worry. I know, easier said than done. :)
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