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CHampstead

Member
Joined
Feb 10, 2011
Messages
10
Reason
Learn about ALS
Country
UK
State
Devon
City
Barnstaple
Hi everyone, I'm new to this forum and would like to post a list of symptoms that I've experienced recently. Thanks to anyone in advance who could help shed some light on this :)

Okay, in the last 3 months I've had a wide range of sensory and seemingly neurological symptoms. This list is complete as far as I can tell:

Frequent headaches, normally isolated to just the left side of my head.
Visual disturbances (floaters, flashes of light, etc), accompanied by pain in/behind the affected eye (left).
Pain in both ears, normally starting from where the jaw connects.
Occasional stumbling or mispronunciation of words.
Tiredness/aching in jaw and throat after talking or chewing for long periods of time.
Difficulty in swallowing saliva (food and drink is fine), accompanied by a lump sensation in throat.
Excessive mucus/saliva gathering in throat, often needing to be coughed up (sometimes coloured, sometimes clear).
Occasional breathing difficulties.
Twitching tongue - not entirely sure if it twitches enough to be worried about.
Neck/back pains.
Slight weakness (possibly perceived?) in left arm, often accompanied by sensory symptoms such as coldness, numbness or tingling.
Tremor in left arm and hand, made worse by exercise.
Twitching/buzzing in both hands (more so left), occasionally visible. I can also often see the veins in my left hand pulsating and throbbing, sometimes to the point of pain.
Excessive sweating for no reason - to the point where beads of sweat actually run down my arms.
Tension in left side of stomach - almost as if the muscles are tensing automatically.
Frequent urination.
Weakness in left leg (perceived?) around knee joint, often accompanied by cold, numbness and burning sensations.
Occasional numb patches in left foot.
Pain/sensitivity to touch in certain muscles and joints - including shoulders, right thumb muscle and index/middle finger on left hand.
Frequently feeling nauseous, feverish and generally unwell, sometimes caused/aggravated by heat.
Fatigue, and incredibly deep sleep, often with very vivid or lucid dreams.
Some loss in short-term memory, attention span and thinking of words.
Night sweats and restless leg syndrome - I've always had these, but they've got worse lately.
Frequent depression and angry/aggressive thoughts - I seem to be much easier to anger or upset lately.

Sorry for the long list, but I would like to know from anyone with any degree of experience whether these could be caused by a neurological condition? I have been to the doctor's (a few times), and in their opinion there are too many sensory symptoms and too fast a progression (leg, arm and throat were all affected within 2 weeks) for this to be ALS/MND. I just feel that because I have suffered from panic/anxiety in the past that my problems are automatically being attributed to that.

I should also add that I'm 19, male and fairly healthy (no fast food, mostly vegan diet). I drink, don't smoke and have used drugs in the past but not any more.

Thanks for any help, and sorry to waste your time if it's apparent to you that this isn't ALS or an MND :)
 
Hi,
In 19 years and with symtoms you described...it can be a lot of conditions but I would bet that none will be MND of any type. The twitching tongue, dont you have whole tongue twitching? Like your tongue suddenly jerks. That is something different than tongue fasciculations.
I have been there with a lot of symptoms as you are having while my anxiety attacks years ago.
But really, most of your symptoms points pretty much away from ALS...
Interesting note that heat make it worse, my friend had hyperthyroidism and this is one of its symptoms, along with neurological ones and excessive sweating, same as you described. Nothing much serious and perfectly treatable. Just something that might be worth to check with your endocrinologist.
 
I'm hoping it's nothing neurological, but even a mild neuro problem would be a good result in my opinion.

You're right about the tongue twitches - I just looked up genuine, neurological tongue fasciculations on youtube and they're completely different to what I have. Mine are the jerks like what you described, which I think is normal - the videos looked more like a pulse beating in a certain part of the tongue.

My thyroid was checked a while back and came back fine - the only thing that stood out was a slightly high haemoglobin count in my blood. Any idea what that could mean? It could be contributing to some of my problems. Either that or I should go to someone that specialises in thyroid issues and get a second opinion.
 
Its always wise in these situations to go and get a second opinion, but you just sat and named off nearly every symptom I have been dealing with for the past year. There is a few things it could be. You need to have your thyroid ran again (just to be safe), you need to make sure someone has checked your B12 level to make sure it is not low (my guess is they already have, its pretty standard), and if one of the doctors that you saw wasnt a neurologist, then you should book and appointment with one, just to cover your bases. Most neurologist are pretty darn good at determining whether someones symptoms are neurological disease based, or anxiety and stress based.

My best guess, its either BFS brought on by a virus or trauma of some sort, or just good old evil Anxiety. Both are capable of doing everything you listed in extreme cases. But before being tagged with one or the other, it is best to make sure other culprits are ruled out ie: Thyroid issues, Low B12 levels, ect. I doubt VERY seriously that MND has anything to do with your situation, and you sound like me and so many others on the BFS board. You should really head over there and see how much your story and symptoms match up to others over there.

Take care, and I would bet my next months rent money that you are fine:razz:


Robynn:grin:
 
You might be onto something with BFS. Come to think of it, I reckon I was ill just before these symptoms started cropping up - cold chills, fatigue, nausea, light-headed, etc. and suffering from periods of stress and anxiety, so something to do with that could have triggered it. I never really connected the two before...

I'm guessing my b12 levels were checked, but then again I imagine mine probably should be lower than expected - seeing as b12 comes from animal-based foods, which I hardly eat. I also cut dairy and eggs from my diet just before this all started. Maybe that's more than just a coincidence? :)

I haven't seen a neurologist yet, but I've seen 7(!) doctors in the last 3 months or so, all of which said it was probably anxiety or a benign condition. Logic suggests I've probably got nothing fatal :D
 
Well if you need or want anymore info on BFS, just leave me a message on my profile page, I'm happy to help. I only suggested a neuro because sometimes it helps with the piece of mind thing when you are experiencing some freaky symptoms, its easier to blow them off and not give them too much attention if you have it in the back of your mind that you have seen a specialists and they have ruled out the nasties. Then again, some people are the opposite and fair better by listening to their General Practitioner , because often being referred to a specialists and getting a full work up for a benign condition only brings more anxiety and stress to the sufferer, so it is a personal choice, you know you best.

Take care

Robynn:)
 
What you need is some good red meat, a prime rib steak or T bone!

Seriously though, nothing of what you have described sounds like ALS. Maybe some other neurological thing but not ALS.
 
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I think I'll hold off on seeing a neurologist unless things get a lot worse - if I get atrophy or permanent speech loss I'll give it a shot.

Thanks for your help, I'll get back to you at some point regarding BFS as it seems like a definite possibility :)
 
Ugh, steak! Can't say I've ever been a fan myself, but I've always been more of a plant-eater anyway.

It's relieving to hear from people experienced with ALS that it doesn't sound like I have it, and it's nice to find a site where there's a lot of positivity, instead of all the doom and gloom associated with the disease that I've seen elsewhere :)
 
I think that is a wise plan when it comes to a neuro, there are days where I wish I had never went but then again, I was told to go. It doesnt sound like your docs are concerned, so I think you're good.

Take care

Robynn:)
 
B12 supplements are cheap and you only need to take them every few days (vegan) or once a week (vegeterian). Plus, they up your energy, what's not to love?

But yeah... not MND. I hope whatever it is passes.
 
CH,

I must say that you live in probably one of the most beautiful places on earth. If only I could be in Devon right now! I remember staying in a thatched cottage/ converted old mill in a town called Bolberry. Paradise on earth.

I really feel for you. I am no neurologist but I have been in and around the healthcare field for 45 years and I've seen a lot. I can confidently say that there is no one syndrome that encompasses all the symptoms you describe. Scanning your body is a distressing pastime and not helpful at all. But I know that this is not something that you can control right now.

What I would ask if I were your treating physician is this: what is your present situation? Are you in a happy relationship? Do you find your life fulfilling? How busy are you? What has changed in the last while? How much time do you devote to assessing and recording your symptoms? Then I would recommend that you see a counselor to support you at this difficult time. This is not to say that there is nothing physically wrong but that is where the most of your discomfort is coming from. You are suffering too much.

Just a personal note. My husband had an eye appointment this AM. 3 years ago he had a detached retina, while on a plane to a tropical country where the medical treatment wasn't optimal. He lost the sight of that eye after going through many surgeries back home and 3 months where he had to lie face down 24 hours a day. A nightmare. Then problems with the other eye. ( These things occur much more frequently after one has had cataract surgery). Waiting for him to come home this morning, I have suffered from nausea, palpitations, weakness and visible shaking in my legs, slurred speech and irritabilty mingled with profound depression. I have had three near falls while I wait. In other words my fears have almost paralysed me for the last 3 hours. I have wasted time that I will never get back.

Happy to report that all is OK but my darling husband decided to stop and treat himself to a quarter pounder and an iced coffee. My diagnosis: anxiety secondary to a quarter pounder and an iced coffee. Had I been seeing a neurologist this AM I am quite certain that he or she would have been very impressed indeed at the rapid acceleration of my neurological condition.

I worked with a neurologist at one time. His best piece of advice to those with undiagnosed disorders that hadn't really amounted to much over time was: keep busy. My advice is see a counselor. Take care of the part of your life that might just be fixable without medical inervention.

All my best to you.

ND
 
I'm in total agreement. Nothing you're saying makes me think you MIGHT have ALS/MND. Gotta be something else.

AL.
 
Thanks for all the support, it's relieving to see so many people that know more about this disease than me in agreement that I don't have it!

Northern Dancer - Devon is definitely a beautiful place, although it was only after briefly living in London (university) and then coming back that I realised it. I guess after living there for almost 19 years I took it for granted.

I also reckon you're most probably right - there are definitely a lot of mental factors involved in my problems, I can tell by the fact that in my head I could only answer your questions negatively! My GP reckons the same, so has referred me to a local organisation for psychotherapy. It's just a case of waiting to see what comes of it...

Once again, thanks to everyone for all the support and helpful advice, I might finally be able to convince myself that I don't have ALS soon! :D
 
CH,

It takes a lot of strength to be able to ask yourself questions like the ones I posed and to answer them honestly. You may feel like you are in a terrible state right now, but you are emotionally very intelligent. Unlike a lot of the poor souls who linger here looking for answers, you are open and receptive to suggestions. What a great start. It takes time to heal so don't get discouraged. I'm confident you'll get there and be better equipped to handle whatever life throws your way. I am hoping that only good things will happen for you.

By the way, I have the most beautiful photo taken in a village called 'Bickleigh' in Devon hanging in my stairwell. Such wonderful memories. I'll be thinking of you whenever I see it.
 
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