An epic tale (get a drink before you start) Falling Apart

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An epic tale (get a drink before you start) Falling Apart

Postby Gaz on September 19th, 2003, 1:32 pm

Hello all.

I had an EMG on Monday and was told afterwards that the twitches I have been experiencing are Benign Fasciculation’s. Naturally I am pleased that nothing more serious has been identified. Whilst I do not wish to appear to be a hypochondriac If I explain my recent medical history you may understand why I still a have some worries. Be assured I do not wish to be diagnosed with anything else however if I have got something else I would like to know .

April 2003 Suffered 3 or 4 attacks of severe Vertigo, nausea and tinitus when I say attack I mean felling ok one minute and practically unable to walk the next with the effects generally lasting 2-4 hours where I would just lie still then subsiding slowly over the next 2-3 days. Never felt normal afterwards, left with a sense of fatigue weakness (not sure if I mix the 2 up) occasional head pains odd sensations (like a cloud passing overhead/ or someone blowing a balloon up in my head) Also had problem with balance which improved with exercises from the DOC. This was diagnosed as Labrynthitus an infection of the middle ear. Had an MRI that came back clear. This all lasted a couple of months with me continually feeling sick and odd.

Odd sensations seemed to alleviate somewhat over the next few weeks but still never felt good. Had another couple of bouts of attacks where I would simply remain bed or sofa ridden for a day or two. These attacks seemed to increase in severity at one point I wanted my wife to take me to Accident & Emergency (being the considerate sought she didn’t as it would have involved waking up our 1 year old) I refused an ambulance as I thought that was slightly over the top and did not want the neighbours to talk. I was very tired since the attack came on at circa 2:30 am with cold sweats vomiting, diahorea mild hallucinations (well I thought I had no hands for a while if that counts) Looking back its quite funny but was bloody scary at the time.

Not sure when I started to notice the twitches I think it was May. Following one of the attacks I began to have occasional fits of retching usually once or twice a day often after coming out of the shower or of the toilet.. This was accompanied by an almost 24/7 feeling of nausea. Did have very slow walking where I would be over taken by octanagerians (no offence intended but frequently they are slow) and still feel my legs are a bit weak?

Have also had pins and needles, some really nasty ones in the testicles have made me want to scream (if I had not been at work I would of). Sometimes get numbness / dead arms whilst sleeping. Cramps and tremors in the hands and feet. Most of these have gone but still get tremors and mild pins and needles. Maybe I am a Hypochondriach?

Maybe because some of the other symptoms have subsided I noticed the twitching more? In Circa June I asked the ENT consultant who had quickly diagnosed me with labrinthytus if I could see a Neuro (he had said he would send me to one if my symptoms persisted anyhow) .

Whilst all this was going on I had also noticed flashing lights in my vision, things moving in the corner of my eye and the occasional minor shakiness in my vision. As I was due for an eye check up I went to an optician who immediately refereed me to my GP who in turn immediately refereed me to an Eye specialist with a Tear in My retina. This has now been successfully treated with laser surgery. Still get the odd flash, shaking and things moving? Thankfully I know the things moving is floaters, the flashes are the fluids in my eye coming away from the retina which can happen (and is the only explanation for the tear in the first place !). Doesn’t explain the shakiness but I reckon it could be my eye lid twitches? Just hope the next flash is not the next tear. Sounds odd but to get a physical diagnosis for this was a great help. I was beginning to think I must be going mad and it was all in my head.

Went to see the Neruo day after my laser surgery for the eye. He showed me the letter that he had got from the ENT Consultant which said I had been seeing the ENT specialist regarding tinitus, bad leg and droopy eye lid (there was a posh name for the droopy eye I cant recall it). My main problem when I did see the ENT guy was nausea and vertigo? One of his sentences was incomplete? I have got a droopy eye (have had all my life just a bigger eye lid on one side)/ The ENT had referred me to the neuro for an opinion on my muscle twitches.

The neuro went through my medical history and focused on my muscle twitches (I guess as that what he had been asked to do) . He did a physical examination of reflexes and watched for tremors / twitches sods law none came. He advised a blood test (have not had the results of these yet) and EMG which as I said diagnosed Benign Fasciculation’s.

The nausea and retching has subsided not gone (is definitely aggravated by fatigue). Following the EMG on Monday, this Wednesday I woke up with a very saw lower back. I have had lower back muscle problems occasionally before. This seems to have come on for no reason? Could be picking up my child or bending? But went to bed ok and woke up very saw. This has now lasted 3 days and this morning I had a particularly nasty retching fit which has left me with a feeling of something stuck in my throat noticeable all the time particularly when I swallow. Also noticed today at lunchtime as I blew on my coffee (probably doesn’t help but I do not have a lot) that my breath trembled like when you are cold having been swimming and your teeth chatter.

Right now I feel tired and weak, usually do, and if I move. Stand up I get a bad pain., slight lump in throat other than that in very good spirits.

What do you think folks? Falling apart?

I had decided after reading this site and others that I must have had Viral Labrinthitus which then caused my Benign Fasciculation’s but my bad back and shaky breath has got me rethinking? Are tremors also part of BFS ? can they effect your breathing and make it shaky? If I have something horrible so be it. we are all going to die I know that and nothing will change it. Perhaps deep down its all anxiety related? Maybe my blood tests will show something simple like thyroid problem or diabetes, in a way I kind of hope so? Just want to get on with making the most of my life, perhaps play football again and run round the garden with my child rather than spend time writing really long things like this.

Look forward toyour thoughts ?

Thanks Gaz
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Postby Jenn311 on September 20th, 2003, 10:30 am

Wow you've had a really rough year! So sorry to hear of your woes...

As for the teeth chattering, That is quite common in BFS. I get that all the time, as well as transient tremors elsewhere as well (like in my hands). Many people say that their BFS started just following a viral infection, and it sounds like you had a nasty one that may have caused some real long term damage! Isn't there some kind of surgery that they could do to fix your middle ear? I would hate to walk around dizzy and nauseus all the time. Hey maybe you're pregnant! (Just kidding...)

Well, just be glad that you had a clean EMG, that will rule out anything really nasty like ALS....I think once you've recovered a bit more from your middle ear infection (I've heard those are the worst....) you will start feeling much better. As for being tired a lot...I think that is a common symptom for BFS, many people refer to it as "exercise intolerance", where just a minor exertion will render you feeling worn out. And it can also take a long time to recover from a viral illness, post-viral syndrome I believe is what it's called.

Make sure you get plenty of rest, and try not to do anything that is going to hurt your back anymore! Picking up and carrying babies around can do that to you! I have a two year old that weighs like 35 lbs, and while my back is used to it, my arms and shoulders are often sore.

Take care...

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