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TimeWillTell75

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Hi guys and gals.

Firstly I would like to say that over the last few months I have regularly visited this site, and read through some of the forums etc, and I have to say that I think the people here who have relatives / or are themselves going through this illness are so very brave and I salute each and every one of you.

Ok, so what brings me here. Well, I guess that’s pretty obvious.

I wanted to share my story with you (be warned, it’s going to be a long one) and hopefully receive some feed back as to what may, or may not be happening to me. I understand that none of you are doctors and can’t diagnose me as such, and I also know that each and every story is different with regards to diagnosis, but nonetheless it would be great to hear peoples opinion. It also would be great to talk to people who have similar symptoms as myself.

Ok, so, it all started around 8 months ago.

I started having many different symptoms, but the very first symptom I noticed was that I started to have random fasciculations over my body. The fascicultions 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 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 falling asleep at night, muscle cramps, tremors in fingers, sleeping problems (waking up every hour), 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.
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 polybasic units and hints of rapid recruitment. These anomalies are rather a non-specific abnormality rather than a definite myo-pathic 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 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 to 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 the here and now and many symptoms still persist, however I also have some new symptoms, some of which started a while ago and are really starting to concern me.

For a few months now 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 have 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 drastic.

I have to admit that all these symptoms have got me really worried about the possibility of Bulbar ALS, and what has made me even more concerned is that I had my second EMG 2 days 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 have read about those kind of noises during an EMG is bad. Is the information I have read about that correct?

Ok, so that’s my story.

I want to make it clear that I never have suffered with anxiety or anything like that in the past, but right now I am extremely concerned about these symptoms and I do feel anxious.

Unfortunately here in the UK you have to wait around 10 - 14 days for the results of an EMG.
My next appointment with my neurologist is on December 1st when he will go through the EMG results with me.

Basically, what I would like to know is does my story sound familiar with someone who has early signs of ALS. And also are the sounds I describe when the needle was inserted under my chin during the EMG a bad sign?

Thank you all for taking the time out to read my story.

I hope to hear from you guy/gals soon, and would appreciate it if you can be as honest as possible (good or bad) as I really need to know what I may be facing here.

May god bless you all.

Danny.
 
Sorry, that should read occasional ''polyphasic"* units on my EMG results in May.
 
Sorry we can't help you because we aren't doctors and I for one have know idea what your test results mean. Why would you think we can even come close to figuring out what is going on with you when a medical professional hasn't yet. We haven't spend years and years studying medicine. Doesn't look like ALS is what's going on with you at all. You didn't even say that the Dr's even were looking at that. So, why are you jumping to irrational conclusions that it could be. Read the stickies and other then that there is absolutely nothing we can do for you at this point. Take you questions to a doctor please and not us. It would be best for you own health to if you avoid googling a bunch of medical stuff as well. It will only cause anxiety for you. Let a qualified professional do their job. Best of luck to you.
 
Hi Danny,

Thank you for using paragraphs! Many people don’t.

And thank you for being so detailed in your symptoms. That helps a lot.

You’re right that we can’t diagnose anything except ALS. I know ALS fairly well, but nothing else.

You described a lot of things going wrong, but honestly, you didn’t describe Bulbar ALS, or any other type of ALS, at all.

Besides the twitching, you described a lot of sensations: Numbness, tingling, pins and needles—but ALS doesn’t “feel” like that at all. It doesn’t affect the sensory nervous system. I don’t know what you’re feeling, but it’s not ALS. Limbs don’t feel like they fallen asleep. ALS people don’t “feel” anything wrong in their limbs. Their muscles simply don’t activate, don’t contract. ALS is about limp, useless muscles.

Twitches could be anything so they’re not diagnostic of anything. Diffuse random twitches don’t indicate ALS.

The mouth and gustatory symptoms don’t fit, either. Dry mouth, diarrhea, hoarseness and urine frequency are not players on the ALS field.
You’re still eating and drinking without complaint, and walking and talking without problems. You’re not complaining of dropping things from limp fingers.

Coughing doesn’t happen because of ALS. In fact, coughing requires muscles, and ALS wastes muscles. So be happy; every time you cough, it’s a life-affirming spasm.

I don’t know what the neurologists could be looking for. There are 162 motor neuron diseases alone, nearly none of which are fatal. But you’re complaining about your sensory nervous system—totally different.

If you feel your tongue, be happy. Throat tightening is not ALS. Muscles don’t tighten in ALS.

Ask your neuro about the EMG noises. I don’t know what they are, but frankly, a rhythmic tapping sound sounds to me like an equipment anomaly, not a biological source.

Since I’m not a doctor, all I can say is you don’t have ALS, and you’re not dying.
 
Just to add the under the chin EMG is noisy. I am not bulbar and my results of that area have been normal. The attending neurologist who did one of mine was teaching a fellow and she said there is always a lot of noise there
 
Thank you very much for your feedback, it is much appreciated, and a special thank you Atsugi for your long detailed reply. That has helped me relax a little.

Nikki, it is very interesting to hear that your neurologist said there is always a lot of noise when the needle is in the chin.
Like i said before, everything i have heard and read about those kind of noises during an EMG seem to be bad.

Do any other members here have any opinions on that / or echo what Nikki said about lots of noise during an EMG under the chin.

I guess it's just a waiting game now to see what my EMG results show.
 
TimeWillTell75: Sorry to hear about your symptoms. You didn't mention your age.
I would just like to point out something not related to your topic but in general.

I totally understand the amount of difficulties that people here face everyday and take time and effort to help others and I guess everyone appreciates that. But the thing is that this section of the forum has been created to discuss the symptoms of ALS (who are yet to be diagnosed or suffering with their symptoms) even if sticky s are there. If sticky s are sufficient then there is no need for this section of the forum...right? I am writing all these because I have seen some members ( though very few) who does not even has ALS but still behaving rudely to newcomers here always. However, most of them are very very helpful who takes time to address most of the issues.

As always, Atsugi and Nikki J are extremely helpful.
Atsugi: hats off to you specially. I absolutely admire you for your responses.
 
SM BS, as you wrote,

("If sticky s are sufficient then there is no need for this section of the forum...right? I am writing all these because I have seen some members ( though very few) who does not even has ALS but still behaving rudely to newcomers here always.")

Interesting comment... according to your Bio the reason you're here is "Other".

Do you have ALS? No. Just wondering, because you have been told by very knowledgeable members you do not have ALS. So... are you now just hanging around to critique the Forum?
 
Dear Clearwater AL, thanks for your reply. I had some issues earlier but after the members have pointed out to me that it's very unlikely to be ALS, so I understood it's more of my anxious thoughts.

But here in this case I am not talking about myself at all. I am just saying that at least for the first time when someone (almost paranoid and engulfed with symptoms which shares properties with ALS) comes and asks questions (I know the answering the same kind of questions is definitely irritating), I think one should try to understand his/her concerns. If he/she does not understand even after an explanation then I guess avoidance or rudeness could be natural.

But as with the case of TimeWillTell75, I guess this post is his first, so I think he should be given some time to adjust and explanation, which I feel most of the members provides always. But I am talking about just 1 or 2 whose response I felt a bit rude considering it's the very first question of this guy ever on this forum. I know it's a lot to ask for, from most of the people here due to their daily struggle and their frustation and irritation are totally understandable and accepted. But it's a kind of rude from those who does not have it.

However, do not take me wrong. I completely agree (and everyone knows, who am I to admit or agree?) that most of the members are really really helpful and their zeal and compassion to fight one of the worst condition ever to mankind is worth admiring.

I have bio as "other" as I did not fit into any other category.
 
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TimeWillTell75 and sm_bs:

This Do-I-Have-ALS subforum exists in order to keep non-ALS from playing with the ALS people. Let me explain why.

You see, ALS is a strange fatal disease, and treating total paralysis is a very complicated but vital thing to do. No one without ALS knows how to do it. Even most doctors don't have a clue. So people with ALS are stuck here, relying for their lives on others who have ALS, too. We really don't want anyone else here venturing an opinion.

So It's important, then, to ensure that the people in our conversations are experienced with ALS. It's equally important to ensure that people WITHOUT experience in ALS need to leave as soon as possible. I don't want to encourage anyone to stay more than one day, unless they have ALS.
 
Hello to all.

Well, i have my EMG results back, and i would like to share them here, maybe to help others who are on this 'Do i have ALS? Is this ALS? thread, that were/are worried about ongoing worrying/troubling symptoms, and to make them realise there is 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. 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 hopefully now this is where my long journey ends. Of course if symptoms flare up i am sure i will get a little anxious from time to time, i'm only human at the end of the day, but now i will take my story to another site/forum.

All that is left for me to say is a very big thank you for those who took the time to read or comment on my story.

I really truly hope and pray that one day a cure for ALS is found, and with all my heart i sincerely wish the best for each and every one of you.

Take care and best wishes.

Danny.
 
Best Wishes to you as well Danny. Sorry that you have any issues at all but so glad that it's not ALS. Kim
 
Thats really a good news. Best wishes..
 
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