Old 04-15-2018, 06:03 AM #1 (permalink)
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Default Fear of ALS due to widespread symptoms, I need your view in this.

Hi everyone

Yes, I have read the stickies and I appreciate them! But, I would like to explain my situation and get your views on it.

So, my fear is ALS.

I am a 30 year old male, I have aways been healthy expect for some allergy.

Also, my mother tongue is Swedish so I hope my English is not too bad.

It all began with a light/soft tingling in my left foot and blurred vision in July 2017.

This tingling (the "main" symptom) does not feel like when a body part is sleeping temporarily, for example if you've been sitting on your leg and interrupting the blood supply. No, my tingling is more vague and sometimes I hardly don't feel it. It's also never there when I walk, stand or move my leg, I only feel it when I'm at sitting or laying down.

The blurred vision did not last for more than a half day at a time and it could pass weeks or months between the moments. Nowadays I hardly ever notice it anymore.

This tingling (and the blurred vision) was the only symptom from July to October, when more symptoms started. I'll list them below:

* Excessive sweating - Initially only at night and only from hands, feet, back and inner thighs. Now I'm only sweating from my hands and armpits, but it can be during daytime as well.
* Goose bumps, chills and ague - often sudden attacks that usually only last for a few minutes at a time, but they can come and go a whole day.
* Muscle cramps - only in my calves and only at night, not more than three times totally since October.
* Muscle twitches - first noticed in summer 2017 when a part of my muscle on my left thigh twitched. It ceased the same day. The next period of muscle twitching was in October, now more widespread and lasted for a week before ceasing. Next period began in November and lasted until early January with widespread both small and more powerful twitches. Since then I have only had occasional twitches. I've had twitches in almost every muscle you can think of. My tounge twitches occassionaly when I stick it out. Not combined with weakness or atrophy anywhere.
* Shaking/tremor - only in my hands or fingers, sometimes after I've tested my strength (for signs of weakness) but also for no reason. My hand has shaken when I'm drinking out of a glass or holding a spoon. My thumb has shaken when typing a text message on the phone.
* Strange or heavy feeling in my left leg - occasional strange feeling in my left leg that changes from day to day. It's very hard to describe it, but it's like it's more heavy and stiff compared to your right leg. A few times it has felt like this in my left arm and my jaw. I have never had any actual problems moving the at the moment affected limb.
* Cold hands and feet.
* An overwhelming tiredness - especially in the afternoon when driving home or reading a book. When reading, I have needed to go back and read the last few pages again because I've not registered what I've been reading.
* A feeling of my muscles getting tired more easily and faster than usual, and also developing lactic acid faster than I'm used to.
* When holding really heavy objects in my hand straight out from my body, my arms has began shaking and later on almost buckle when I've pushed myself to hold it up.
* When lifting frying pans and pots, my muscles have tired more quickly than before and sometimes my wrists has buckled.
* When walking after riding my bicycle up a long and steep hill, my legs has felt both stiff and sloppy at the same and my walk has been like jerky for a few minutes.
* Feeling of dizziness - when sitting in a chair or just standing up I have felt how I'm being drawn backwards and how everything should diminish, but my vision has not been effected.
* Sudden loud sounds in my ears that only lasts for like 10 seconds.
* Difficulties using a keyboard - very hard to describe. Usually I use a keyboard without looking at it, but at work I have been experiencing sudden moments when I misspell everything if I don't look at the keyboard when writing. No other clumsiness has occurred during these moments.
* Pain - in different parts of my body and often confined, like on one spot on my arm before ceasing and moving to the same spot on the other arm. It's no pain in joints but more like when you touch a bruise, except there is no bruise.
* Sudden need to visit the bathroom to pee - this was prominent in the late fall of 2017 and it has now almost completely ceased.
* A feeling of being breathless for no apparent reason.
* Cough - around New Years Eve 2017 I developed a cough, a hard cough that caused pain in my throat. Much like a cough you have when your'e having a cold. That did not bother me so much at first. The hard and pain-causing cough wen't away after a week or so, but it got replaced by a strong need to always clear my throat. This continued for about two months, when I told myself it was only psychological and that I should try to stop it to give my throat some rest. It has been hard but I do hardly not clear my throat at all anymore. I still get the need to cough sometimes and then it's a more wet cough with some saliva coming up.

In October, I went to a general practitioner at the local health centre. We discussed my symptoms and they ran some blood tests which all were fine. I had hoped they would find something on my thyroid, since that could explain a lot of my symptoms. So, after this visit I actually got more worried.

Now, in February I wen't to a resident physician at a neurological unit at the local hospital. He conducted a neurological exam on me. No EMG was done. He had me walk on heels and toes, he tested balance, coordination, strength, reflexes, muscle tonus, vision and field of view, sensation, hearing, Babinski and he also checked my face and tongue. After the exam he told me that everything looked fine. Except for some slightly increased tonus in my arms and legs, but he referred that to stress and anxiety. He also discussed the result with a neurologist at the hospital, and came back to me after a few weeks again saying that they did not find anything that points to ALS.

I was relieved, but it still bothers and worries me why I have all those symptoms.

Today, I feel as I did during the time of the exam. But, regarding the the cough and my need to clear my throat. Sometime when I eat for example crispbread, I can get a itchy feeling of crisps getting stuck in my throat for some time afterwards. Also, when I drink water I can feel how I need to swallow more than once to get it down. Occasionally, I can get the feeling of a sore throat and a lump in my throat, sometimes combined with some light pain or ache in the throat.

This morning I woke up with a really raspy and hoarse voice, which made me panic. Yesterday I had no trouble at all. Anyway, I got up, drank some water and started talking and after just a few minutes I had no hoarse voice any longer. I was a bit raspy a little longer, but that also disapperaded. I have sometimes wondered if my voice doesn't sound different, but no one around me has never made any comments about me being hoarse or raspy.

So, to summarize it, hear are my questions:
* Can a neurological exam be done too early, meaning that it comes out clean as mine did but you still have an early onset of ALS?
* Since they didn't do an EMG on me, can a neurological exam be clean at the same time as an eventual EMG is dirty?
* Because of the symptoms from my throat I'm a bit afraid that they didn't check my throat enough; can a clean exam miss out on bulbar onset ALS?
* Since my fear of bulbar ALS; can it start with tingling in your foot and then 9 months later turn out to be bulbar ALS?

I realize that symptoms like tingling, sweating, the need to pee often and a sometimes raspy voice is not somehing that is distinctive for ALS, neither is that the symptoms come and go like mine do (except for the tingling in my foot, it's always there). But I have read so much about this disease and learned that it's mechanisms are not fully understood, that it also can effect other parts of the nerve system than just the motor neurons and that there is some connection between ALS and frontotemporal dementia.

Thank you so much for taking your time reading this!
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Old 04-15-2018, 12:43 PM #2 (permalink)
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Default Re: Fear of ALS due to widespread symptoms, I need your view in this.

Hi, SH,
Whatever you have does not sound at all like ALS. If these symptoms keep you from performing normal activities, I would see the neurologist again and ask for imaging of the brain and spine to rule out things like MS and tumors. But the odds of nothing at all serious being wrong are very much in your favor.

Best,
Laurie
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Old 04-15-2018, 04:39 PM #3 (permalink)
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Default Re: Fear of ALS due to widespread symptoms, I need your view in this.

If you're worried about your voice, see an ENT. Sounds like acid reflux to me, especially since it got better after drinking water.

I really don't see ALS in anything you posted but you need to work with your doctor.
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Old 04-15-2018, 04:54 PM #4 (permalink)
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Default Re: Fear of ALS due to widespread symptoms, I need your view in this.

Concur 100% with both ladies.

Consider this a very good day: you don't belong here!

Good luck!
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Old 04-17-2018, 08:54 AM #5 (permalink)
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Default Re: Fear of ALS due to widespread symptoms, I need your view in this.

Thanks to all three of you for your answers!

If you or anyone could give some feedback on my questions in the end it would be even more appreciated. Especially the one regarding whether a neurological exam can be done too early.

I read the post by JacobS157 and recognized myself in 95 % of his symptoms. I haven't had any emg but he has and if I remember correctly they all were fine.

Regards!
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Old 04-17-2018, 10:03 AM #6 (permalink)
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Default Re: Fear of ALS due to widespread symptoms, I need your view in this.

Soulhunter-

You have been reassured and been told you do not belong on an ALS forum. Please, if you need to ask someone about your health, ask your doctor.
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Old 04-17-2018, 03:17 PM #7 (permalink)
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Default Re: Fear of ALS due to widespread symptoms, I need your view in this.

I have read some other posts here written by people first describing their symptoms and then asking some specific questions, just like me.

In these cases, they have got some short answers to their questions, but I don't, I'm just told to leave. All I want is to try and understand the mechanisms of the disease and how it can manifest early on.

But I'm so sorry, and I'll leave.
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