ALS Terror

[champstead]

Hi all, I'm new to NMP, but have been scouring the forums like a madman for a while now.

For the last 2 months, I have been in near-constant terror of having ALS, or a similarly deadly neurological problem.

This all started after a single panic attack (heart palpitations, numb/tingling left arm, hyperventilating) in August, followed by some anxiety-like symptoms such as a tingling left arm, light-headedness, etc. A doctor's appointment and ECG managed to calm me down and stop the symptoms - for a while.

In late September/early October - about 3 weeks after moving to London to start uni - I experienced my second bout of panic/anxiety, this time suffering from left-eye pain, visual disturbances (flashes of light, floaters, black spots, aversion to light, etc), headaches (isolated to the left side 90% of the time), nausea and tingling and numbness in my left arm and left side of my face. Fearing a brain tumour or aneurysm, I visited the hospital and 3 different doctors, all of which concluded that these were anxiety symptoms and that the chances of a brain tumour were incredibly unlikely due to there being no visible pressure behind either eye. My symptoms gradually subsided once again.

A few weeks later (mid-November), I experienced the tingling/numbness in my left arm once again, which eventually evolved into a feeling of 'weakness' in my arm and hand - although I could still function and carry things normally so I wasn't overly concerned. Unfortunately, I made the mistake of reading about both MS and later ALS/MND online - big mistake! Within a few hours, the tingling sensation had moved to both legs, and the next day I found my left leg to feel particularly weak, as well as stiff around the knee joint. These symptoms didn't subside, and I took myself to hospital once again. After taking my heart rate, blood pressure and blood/urine tests, they concluded that it was almost definitely anxiety-related and nothing neurological. I also visited 2 doctors, the first of which started me on 10mg of citalopram, and the second of which did various strength and reflex tests on my arms and legs - coming to the same conclusion of anxiety.

Unfortunately, my symptoms got the better of me and I quit university. By this point I was experiencing regular 'burning sensations' in my left leg and choking/swallowing problems with the need to cough, spit or clear my throat. I also sensed that I was getting clumsier with my left hand, slurring my speech (or talking 'strangely') and walking with an unusual gait - although nobody has ever noticed any of these even slightly.

Since then I've visited three more doctors, all of which have come to the same diagnosis of anxiety following a series of strength, reflex and blood tests. Despite all the evidence, I still can't help but think that I'm suffering from a fatal neuro disease that nobody has picked up on.

My recent symptoms have included pain in my left arm and finger joints (sometimes in my right), occasional numbness in my toes and fingers (again, normally left side only), a frequent pulsing/crawling feeling in my left palm (like feint fasciculations) that occasionally travels to my right hand/foot and a taught feeling in my left calf muscle. The doctors have still come to the same diagnosis of anxiety, and have concluded that my throat/saliva problems are caused by globus pharyngeas - although I suspect either GERD or post-nasal drip.

Despite the fact that all of these symptoms can be caused by anxiety (which I definitely DO have), I still can't shake my fear of ALS or a similarly debilitating neurological illness. I also know that is likely my fear of ALS that is causing my anxiety to mimic many of its symptoms, and that at 18 years old the chances of having any MND is REALLY unlikely - plus I doubt that any anxiety sufferers actually have the disease they're scared of! However, I still feel that I could be that 1 in a million that has anxiety and a fatal disease at the same time!

I suppose I'm seeking reassurance of just how unlikely it is for me to be suffering from anything serious, and to know if anybody else has symptoms that are mostly unilateral or isolated to a single part of the body - such as twitching in one hand, left sided numbness, etc. Any help would be appreciated A LOT.

Thanks for reading, and sorry for rambling.

[Groundhog]

Hi

If you have scoured the forum you will know that all your symptoms are that of anxiety but equally as you point out they could be related to other diseases, a doctor would be able to reassure you...but wait you have seen a doctor –in fact you have seen several and they all say anxiety. Unfortunately you have what most of us have an overactive mind although several doctors have diagnosed you you still believe Dr Google or nurse irrational thinking.

You see the problem with us is that we don’t believe doctors so we demand tests, the tests come back fine then its ‘what if they missed something’ would they have checked for x, y and z. The tests were last month could I have caught a, b and c since – its a never ending spiral.

Has one of the docs not recommended some sort of therapy, sounds to me this would help if only to get your head back on track. :)

[Diva]

Hi Mate

Sorry to hear you are suffering so severely at the moment. I'm no doctor but your symptoms do sound very much like anxiety and it seems you've had all the necessary tests to rule out anything serious.

My advice would be to go back to your GP and take your post with you - he may want to increase your medication or recommend some form of therapy. You are too young to be overtaken by this awful anxiety and it would be such a shame not to go back to your studies at some time in the future.

It's new year soon - why not try to make a start to beat it? I'm going to try too.

Best love

[champstead]

Hi, thanks for the reassurance.

I will be starting therapy in about 3 weeks time, it's just the wait seems agonising at the moment! I have had my citalopram dosage upped slightly, which has stopped the panic attacks but not the constant underlying anxiety.

I imagine that if any of the doctors had suspected anything sinister they would have sent me for an EMG or MRI by now? None of them seemed even remotely concerned by any of my symptoms - even the more constant sensations, such as the crawling in my hand - and said that a scan would at best temporarily satisfy me until my next symptom appeared.

In the past I've feared heart attacks, strokes, a brain tumour, brain aneurysm and ms - and I haven't had any of them. I don't see why my fear of motor neuron disease should turn out any different! If I only I could truly convince myself that...

[Diva]

That's great you sound more positive and reassured. You are quite right that the Drs you have seen would have referred you if they though anything sinister was going on.

I'm glad you are going to get counselling, now you just have to do something to take your mind off your anxiety until that starts and until it starts to help.

I try to do something to take my mind off it, anything, ironing, housework, a brisk walk, deep breathing TV a good book or magazine. The deep breathing really helps as does relaxing the shoulders (like you are dropping a suitcase). You are young so sport might help too, do you have any interests?

You might want to take the time to do some study to help when you go back to Uni, which you will, I'm sure, when you are ready.

Best of luck and keep us posted.

xx:yesyes:

[champstead]

Good advice, I have found that the squirming sensation in my hand and globus sensations decrease (or sometimes go away completely) when I'm distracting myself. I hope that this is just my anxiety mimicking the symptoms that I fear the most, which is what I'm starting to believe. There's not really any logic in fearing a disease that affects about 0.002% of the population anyway!

Thanks for the help and reassurance :)

[Anxious_gal]

have you been diagnosed with migraines as they can cause all those symptoms and you can get migraines without any actual pain.

[champstead]

I haven't been diagnosed with migraines, although that could be a possibility. Can migraines cause pain in other parts of the body - e.g. arms/fingers, or tingling sensations or similar sensations?

[Dizz]

YES THEY CAN !! And every symptom you describe I GOT.

You can get a migrane without an actual headache and the associated symptoms range form feelings of anxiety to tingling, numbness, odd vision, dizziness, crawling under the skin in fact all the symptoms of anxiety.

How do I know this... because a very kind person on here sent me the details she had from her neurologst who specialises in migraines.

My doctor had all my 'symptoms' down as anxiety/stress related... the other doctors at the same surgery all concluded the same on my many visits with all my weird symptoms. They put me on 20mg Citalopram and I lasted 3 days on it.. blummin awful.

Got fed up of hearing them all say 'your symptoms do not fall into any one category.. therefore its stress/anxiety.. go away.. relax etc.

Finally I showed one the info on these 'silent' migraines and all the associated symptoms.... and he was amazed and said he thought THAT WAS IT. So seems I may have been getting these but with not knowing waht was causing all my symptoms I started to worry and actually finished up stressed and anxious and fearing the worst with every little niggle or twinge.

Certainly worth you following up on it as you sound just I was....

[crazyhayz]

My gosh u sound JUST like me a couple of months back! Its true if u think u have something, u create symptoms! the mind is very very powerful! I had all those symptoms and more, literally every single one. I was absolutely convinced. I actually spoke to a few people nline who are actually living with MND/ALS, and within a short while I realised I really did NOT have it. The one thing about MND/ALS that PROVES you DO NOT have it, is ONCE THER SYMPTOMS ARE THERE, THEY DO NOT GO. ONCE U HAVE A WEAK HAND, OR ARM, THATS IT. THAT WEAKNESS NEVER GOES. AND U CANNOT PHYSICALLY USE IT. weakness occurs once the muscle wastes away, and u would of noticed that by now, a long time ago, and other people would have to.

At 18, u DO NOT have to worry one bit about having MND. Seriously hun. The symptoms DO NOT COME AND GO. I learnt that from people who are actually suffering from it! Once u get difficulty swallowing, thats it. its there. and it NEVER GOES. U wouldnt just have it one minute then be ok the next!! So u need to accept u DONT have it hun... A doctor said to me that if I had MND, I wouldnt be sat there asking him. He'd be sat there telling me!!! So that kinda made me realise.

And my symptoms were absolutley debilitating, trust me, just look at my past posts hun. I was in total fear of it, i still fear it in a way, even tho i know i havent got it.

U are suffering with classical LONG TERM ANXIETY SYMPTOMS. Long term anxiety and stress makes ur body sooo on-edge and basically ur bloodstream/nerve endings are constantly on a 'high' so to speak, due to constantly high adrenalin levels. (caused by anxiety!!). Its crazy how much anxiety symptoms mimic those of MS/MND, i know exactly how u are feling hun, i really do.

Deffo ask for some meds which are good for reducing adrenalin levels (bet u will see a big difference! i did) and its called Propanalol. Its a good med for adrenalin and loadsa sprts star or film actors take it to calm their nerves before doing things, so its not anything scary!! I take one or two every time I feel a bit strange, and they work wonders for me.

Have u had CBT for ur anxiety??? its really good. U should ask ur doctor for an immediate referral for CBT via ur local Mental Health Team. Theyl help u alot.

But seriously hun, DO NOT WORRY ABOUT MND. U do not have it. I would lay my life on it and all the money i have. Just trust me. These sorts of serious neurological diseases dont just come and go babe, u would KNOW if u had this. Other people would have noticed!!

I suggest looking into the above, and if ur still suffering, then ask to be refrred to a Neurologist just to put ur mind at rest. My doctor did but all doctors are different, they probly wont as they sound like they know its just anxiety!

Take care and just start to tell urself u are NOT ill, this is all in the mind and get as much help as possible to get better x

good luck love x

[crazyhayz]

silent migraines are a definate possibility too x

[champstead]

Thanks for the reassurance everyone, I'm definitely going to suggest migraines next time I see the doctor. I have frequent headaches (a few times each day) so it could just be a standard migraine. Migraines can be caused or worsened by anxiety too so it could be that I suffer from both.

I did have CBT back in uni for about a month, unfortunately my therapist had other commitments off of campus though so sessions weren't that regular and I started getting worse because of that. I'm starting therapy again on the 17th back home.

I was actually given propranalol by one of the many doctors I saw - it did make me feel better for a while, but stupidly I woke up feeling anxious the next day, decided "it's not working" and stopped taking it! I should have realised that no medication is a long-term cure and you have to stick with these things. I might try it again.

I'm gradually starting to believe that this is all caused by anxiety, but unfortunately the ALS fear is always there, even though I know how unlikely it is that I have it - I have a better chance of winning the lottery about five times! I think it's how constant so many of my symptoms are that worries me - and is it really normal to have this practically-constant buzzing/crawling thing in just one hand?! I guess it won't stop for good until I calm down properly?

Thanks for any help :) x

[champstead]

I know this thread hasn't been added to in a couple of days, but thought I would update. The throbbing/crawling in my hands has reduced a little - it's the swallowing/globus feelings that are worrying me worst now! I'm scared I'll wake up one day and be unable to speak or eat properly :scared15:

On the bright side, I actually have the opportunity to speak to a family friend with MND soon, so hopefully that will be reassuring... or scare me to death!

[Stav_98]

Classic anxiety, I think you'll be perfectly fine :)

With all those doc visits I think you're the healthiest person on the forums. The doctors would have looked for other symptoms when you visited then and hence why they've ruled out 'proper nasties'.

[carlos2011]

Hi

If you have scoured the forum you will know that all your symptoms are that of anxiety but equally as you point out they could be related to other diseases, a doctor would be able to reassure you...but wait you have seen a doctor –in fact you have seen several and they all say anxiety. Unfortunately you have what most of us have an overactive mind although several doctors have diagnosed you you still believe Dr Google or nurse irrational thinking.

You see the problem with us is that we don’t believe doctors so we demand tests, the tests come back fine then its ‘what if they missed something’ would they have checked for x, y and z. The tests were last month could I have caught a, b and c since – its a never ending spiral.

Has one of the docs not recommended some sort of therapy, sounds to me this would help if only to get your head back on track. :)


what a fantastic message..can I print this out and stick it on my wall? lol..I need to seriously listen to this logic

[rebeccad]

This sounds like nearly everyone of us neurological disease worriers as soon as you read about something you are absolutely convinced you have it, i had never ever heard of als before i started googling and within 1 day convinced i had either that or ms, hopefully i dont have either. I was in such a panic i couldnt eat sleep and drove my family mad for constant reassurance. Im not gonna tell you not to worry but what i can say is never ever google because it makes you 100000 times worse. x

[champstead]

It's been a while since I've posted anything - I didn't realise this thread was actually still active! But anyway, since my last post I've had a very thorough neurological exam by my GP - balance, strength, reflexes, etc - and nothing was abnormal. I'm assuming that if there was anything neurologically wrong then some sort of abnormality would have been spotted somewhere?

I still have the fear there (something I'm working on), but so far the odds are in my favour :)

[kartonkutu]

Hello Crazyhayz,

I am struggling with fear of ALS. Fingers are twitching especially when I focus on:(( But your post made me feel some better and I would like to thank.


My gosh u sound JUST like me a couple of months back! Its true if u think u have something, u create symptoms! the mind is very very powerful! I had all those symptoms and more, literally every single one. I was absolutely convinced. I actually spoke to a few people nline who are actually living with MND/ALS, and within a short while I realised I really did NOT have it. The one thing about MND/ALS that PROVES you DO NOT have it, is ONCE THER SYMPTOMS ARE THERE, THEY DO NOT GO. ONCE U HAVE A WEAK HAND, OR ARM, THATS IT. THAT WEAKNESS NEVER GOES. AND U CANNOT PHYSICALLY USE IT. weakness occurs once the muscle wastes away, and u would of noticed that by now, a long time ago, and other people would have to.

At 18, u DO NOT have to worry one bit about having MND. Seriously hun. The symptoms DO NOT COME AND GO. I learnt that from people who are actually suffering from it! Once u get difficulty swallowing, thats it. its there. and it NEVER GOES. U wouldnt just have it one minute then be ok the next!! So u need to accept u DONT have it hun... A doctor said to me that if I had MND, I wouldnt be sat there asking him. He'd be sat there telling me!!! So that kinda made me realise.

And my symptoms were absolutley debilitating, trust me, just look at my past posts hun. I was in total fear of it, i still fear it in a way, even tho i know i havent got it.

U are suffering with classical LONG TERM ANXIETY SYMPTOMS. Long term anxiety and stress makes ur body sooo on-edge and basically ur bloodstream/nerve endings are constantly on a 'high' so to speak, due to constantly high adrenalin levels. (caused by anxiety!!). Its crazy how much anxiety symptoms mimic those of MS/MND, i know exactly how u are feling hun, i really do.

Deffo ask for some meds which are good for reducing adrenalin levels (bet u will see a big difference! i did) and its called Propanalol. Its a good med for adrenalin and loadsa sprts star or film actors take it to calm their nerves before doing things, so its not anything scary!! I take one or two every time I feel a bit strange, and they work wonders for me.

Have u had CBT for ur anxiety??? its really good. U should ask ur doctor for an immediate referral for CBT via ur local Mental Health Team. Theyl help u alot.

But seriously hun, DO NOT WORRY ABOUT MND. U do not have it. I would lay my life on it and all the money i have. Just trust me. These sorts of serious neurological diseases dont just come and go babe, u would KNOW if u had this. Other people would have noticed!!

I suggest looking into the above, and if ur still suffering, then ask to be refrred to a Neurologist just to put ur mind at rest. My doctor did but all doctors are different, they probly wont as they sound like they know its just anxiety!

Take care and just start to tell urself u are NOT ill, this is all in the mind and get as much help as possible to get better x

good luck love x