My story, 9 Months on. A story of hope!

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My story, 9 Months on. A story of hope!

Postby Nathan75 on November 27th, 2014, 4:51 pm

Hi all.

I wanted to share my story with you (be warned, it’s going to be a long one) and prove that there is 'ALWAYS' hope!

So, it all started around 9 months ago for me. I did post a couple of topics on this site around 6 months ago, but can't seem to copy and paste the links for some reason, (my PC can be a right pain in the butt sometimes), so i will go over again what i was / and still am experiencing.

Ok, i started having many different symptoms, but the very first symptom I noticed in February 2014 was that I started to have random fasciculations over my body. The fasciculations at first were really only located in my legs, but over the space of a few weeks I started having them randomly all over my body - arms, legs, feet, eyes, etc etc. Some were small twitches, others were great big thumping ones (could actually see them through my clothes).
One evening I closely examined my foot because it had a pins and needles sensation in it, and when I looked at it to my sheer horror it was as if I had worms crawling under my skin, and for about 5 minutes my little toe started to involuntarily move.
I tried magnesium/calcium and vitamin supplements but not really a lot changed, my muscles continued to twitch. Along with the fasciculations I had (and for the most part continue to have) many other symptoms, including - numbness in various parts of the body, limbs constantly falling asleep at night, constant buzzing/vibrating sensation (especially in the legs) severe muscle cramps, tremors in fingers, blurry vision, sleeping problems (waking up every hour), excessive yawning, extremely dry mouth during the night, voice changes (mostly hoarseness), a few problems when eating (e.g coughing fits when swallowing food) and urine frequency.
Lots of the dreaded ALS symptoms there right??

Also because I suffer from IBS that also has been pretty severe at times with long episodes of diarrhea during all of this. I guess that long bouts of diarrhea is not at all related to any of this (or maybe it is) but I just thought I would mention it anyway.

After having those symptoms for a couple of months I stated seeing a neurologist, whom I still see now. He issued for me to have an EMG done which was carried out in May this year (which was 3 months after my symptoms first started) The EMG was carried out on my limbs only.
The comments that were made from the results of that EMG were as follows…

Apart from small CMAPs from right EDB, normal nerve conduction studies.
No evidence found for generalised peripheral neuropathy.
EMG from all sampled muscles showed occasional polyphasic units and hints of rapid recruitment. These anomalies are rather a non-specific abnormality rather than a definite myopathic process, but it may be prudent to check CK, and consider muscle biopsy.

Well, my neurologist didn’t seem too concerned at the time, and didn’t really want to go down the muscle biopsy route, but because the ongoing persistent nature of my symptoms he ordered me to have CK blood test (which i then had done, and it came back NORMAL)! He then referred me to a second neurologist to get a second opinion. Anyway, after seeing this second neurologist he also stated there was no immediate danger and told me I didn’t need a biopsy.

They both agreed for me to have a follow on EMG in 6 months time (November).

I did wonder if maybe i had my EMG too soon for things to show up, but i let the doctors/neurologists do their job and just agreed to have a repeat EMG in 6 months.

Ok, so fast forward to 2 weeks ago, and many symptoms still persisted, however I also started to have some new symptoms, some of which started a while ago and were really starting to concern me.

Since the summer I have been getting a constant build up of phlegm/mucus in my throat. I first noticed this happening when I woke up each morning, but now the phlegm/mucus is there all the time and I am constantly having to clear my throat. My local doctor when I seen him 3 months ago suspected post nasal drip. I have been given 3 different nasal sprays over the last 3 months but nothing seems to have worked. I have even had an ENT specialist 5 weeks ago put a tube/camera up through my nose and have a look down my throat, and he said apart from a redness around my epiglottis area everything looked ok. He gave me some gaviscon (which is for heartburn/indigestion) because he suspected I could be suffering from some sort of reflux. He also gave me a nasal spray, but yet again no luck in clearing the phlegm/mucus. Since my appointment with the ENT specialist I have also been experiencing some other throat/tongue/mouth issues which had really made me quite worried. I have noticed now that my throat and tongue is twitching a lot (these were two areas of my body that actually didn’t twitch until recently), I feel the throat twitches and can also induce them by either tapping on my throat or pushing my throat down firmly towards my chest then lifting my head back up. I don’t really feel the tongue twitches, but I can definitely see them. I’m waking up frequently at night with numbness in mouth/tongue, very dry mouth, some mild pain in the throat/neck, also a very tight feeling in the throat/neck which feels as if someone is squeezing it. I also continue to have some mild speech problems with hoarseness etc, and the odd slurred word, but nothing too drastic/severe.

I have to admit that all those symptoms had got me really worried about the possibility of Bulbar ALS, and what had made me even more concerned was that I had my second EMG 2 weeks ago and although every muscle that was tested on the machine was relatively quiet when the needle was inserted - just like my first EMG (no sound) but when the needle was stuck under my chin the machine made what I can only describe as a rather continuous rhythmic tapping noise (as if a tap had been left on and it was dripping) - maybe 2 drips/taps per second, and like I say it was very rhythmic. The noise only stopped once he took the needle out.
Everything I had read about those kind of noises during an EMG was bad.

Ok, so i have to be honest here, whilst all of this had been going on i had truly convinced myself over and over again that i was doomed, i had the dreaded ALS, no doctor/neurologist in this world could tell me otherwise, and nobody in this world could save me now. I even posted on the ALS forums asking them if they believed i had ALS!? And yes, i admit, i had been doing all those silly strength tests / tongue checking too (many many times a day)!

So, what about the here and now...?

Well, i had my 2nd EMG 2 weeks ago, and the results came back today, and i thought i would share them here just so people who are going through similar worrying ongoing symptoms can see that it doesn't have to be bad news, and like i said before -there is always hope!

The Comments of my recent 2nd EMG are as follows:

I note the history of intermittent muscle twitching affecting various parts of the body for 8-9 months and other ongoing symptoms.
Nerve conduction studies show no significant abnormalities. There is no evidence to suggest peripheral neuropathy.
Of the muscles tested only abductor hallucis showed fasciculations, and right bicep showed minor neurogenic changes.
All other muscles tested are unremarkable. Importantly - No fibrillations or positive sharp waves were noted.
The findings thus rule out Anterior horn cell disease. It is probable the patient has benign fasciculation syndrome.

So, there we have it!!!

Over 9 months of what i can only describe as hell has come down to 'a possible benign fasciculation syndrome' diagnosis. - Funny enough, that's the same diagnosis that was hinted at right from the beginning of all this, and guess who from.... yep, u guessed it - my neurologist!!

Well folks, There it is... that's my story, a story of hope!

Will i get anxious if symptoms flare up in future.... Probably yes, i am only human at the end of the day.
But will i sit here day after day thinking i have ALS? .....Definitely not!! I have wasted far too much time worrying about that, and it's now time i started to try to enjoy life again.

Before i go, the best bit of advice i could possibly give to anyone who is suffering with similar symptoms as myself is this - i know it is hard, but please don't try to diagnose yourself with a terminal illness, try to keep off the internet (Dr google will lead you astray), keep seeing your neurologist - AND TRUST WHAT THEY HAVE TO SAY! They are the experts, not us! If you can still do daily tasks i.e - walk properly, talk properly, eat properly and drink properly etc etc - Then you really don't have ALS, you most likely have what 99% of the people on this site have, and that is... BFS!

Hopefully this is where my journey ends now (that's if BFS journey's ever do end)?

Take care, and best wishes to all.

Mr D. Nathan.
Last edited by Nathan75 on November 28th, 2014, 7:42 am, edited 2 times in total.
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Re: My story, 9 Months on. A story of hope!

Postby trustme78 on November 27th, 2014, 11:44 pm

Great post!

Thanks for taking the time and writing everything down. This will help so many people in the months and probably years to come who are going to search for these kinds of symptoms. I think postings like these have helped me so much in my darkest hours when I first got here. My main take away is that you can have all kinds of weird things going on combined with the twitching (something that I am finding out these days as well).

Take care and good luck to you
Volkmar
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Re: My story, 9 Months on. A story of hope!

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