I am afraid

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I am afraid

Postby bestdave on December 22nd, 2012, 1:57 pm

I know that a lot of you have had fears of ALS, and I am currently afraid as I have never been before. I wanted to describe my symptoms as they seem slightly atypical for BCFS, but I want to know if others have had these experiences.

The only thing I have had in the past were some slightly elevated liver enzymes on an insurance physical I chalked up to drinking the weekend before. Otherwise I was a completely healthy 31 yo M.

The Monday prior to thanksgiving(about one month ago now), I was doing house work and felt completely drained of all my energy. . I noticed a small twitch, but wrote it off at that time. Over the next week, I became progressively more fatigued and began twitching in many areas. I gave up caffeine(previously drank 4 - 5 cups of coffee per day) when I read that it can cause fasciculations and wonder if some of my fatigue stemmed from caffeine withdrawal. I already knew the symptoms of ALS and therefore feeling weak and fasciculating caused a very high level of anxiety in me, though I am not typically either an anxious person or typically think of myself as a hypochondriac.

I had a period of severe fatigue for 1 - 2 weeks and had some labs drawn, thyroid, blood counts, sedementation rate were all normal. I had mildly elevated LFTs similar to my past ones and think it is unrelated to my current acute issue(as does my doctor). I told myself it may just be a viral illness and my energy level has improved some. I had abdominal pain and a loss of appetite that kept me from eating for about two weeks. Since then my appetite has returned some, and I am able to eat, but still have some intermittent abdominal pain and diarrhea. Throughout all of this, I have had a sense of fatigue and have been fasciculating all over.

The most concerning symptom I have noticed is a persistent stiffness in a small part of the muscle in my left shoulder. That area sometimes feels weak, and I worry that this represents an early focal weakness.

My question:
I was wondering if people here had persistent stiffness in a single area(my left shoulder and right calf feel this way) that appeared slightly weak to them? I haven't been limited to the point of not being able to do anything, but occasionally will feel like my legs are made of jello, or that my arm is tired for no reason(pulling open doors seems a lot harder than it used to). My right shoulder is always tight if I do anything with it.

Also, did anyone else here have abdominal pain/inability to eat with the onset of symptoms?

I had a limited EMG 3 weeks after onset at my insistence and that was clean, but I have heard it can take months before changes show up on EMG.

The generalized onset of fasciculations I know is reassuring, but I am still scared with the areas that feel weak to me.
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Re: I am afraid

Postby christo on December 22nd, 2012, 2:41 pm

Hi bestdave,

I know too well what you are experiencing. Did you had a clinical exam with the EMG ? I suppose you would mention it if they found something anormal.
If you had a clean clinical exam and clean EMG then you sould feel reassured by these result. What does your neuro said ?
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Re: I am afraid

Postby Yuliasir on December 22nd, 2012, 2:44 pm

Hello,
maybe your onset is not very usual to BFS but it rather looks also not very common to ALS which (in majority of cases) still starts out of the blue with loss of fine or even big motorics without focal issues, especially proximal (in the shoulder) before distal (in the fingers, hand and forearm). At the same time it seems to be similar to chronic fatigue, irritated bowel and other strange non-acute diseases which are often related to both viral action and anxiety (as well as BFS). for me (and for you as far as I understand) it still looks much like subtle form of viral infection - which is much more possible than having ALS at 31 yo. Many virals can run in subacute form with the symptomes exactly as you describe (no significant change in bloodwork, no fever, just extreme fatigue and smal issues like diarrhoea).
Twitchy points often seem to be stiff because of constant involuntary contractions.
In fact main difference between ALS and onther non-MNDs is not feeling but failing - if you feel weak it is not the same as being clinically weak (e.g. failing walking, swallowing or holding things).Think also about that.
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Re: I am afraid

Postby bestdave on December 22nd, 2012, 2:52 pm

Thank you for your replies, One thing that I forgot to mention is that the stiff area in my left shoulder is one of the few on me that does not twitch. Anyone had stiffness in a non-twitching muscle?
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Re: I am afraid

Postby christo on December 22nd, 2012, 2:57 pm

Yes, I do have stiffness sometimes in my left hand which usually don't twitch at all. It sometimes scares me because on the EMG they found a VC a little slow (just above the normal, but still a little slow). I now this is not a typical finding with ALS so I dont really mind (everything else was clean on the EMG) and the neuro said I probably have a small ulnar entrapment. Anyway, this part of my body, hand and forearm, sometimes feei stiff despite no twitches in the area.
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Re: I am afraid

Postby chicagobfs on December 27th, 2012, 12:13 am

4 or 5 caps of caffe a day? That's a lot! C can deplete you from minerals and vitamins It's possible that you have low magnesium level which doesn't always show in regular blood test. I was watching dr Oz few days ago and they were talking about chronic fatigue and magnesium levels ...you should maybe try to find this episode online, also that's only my assumptions and I'm not a md. More, I have days or moments if fatigue which seem to happen for no reason, maybe we get tired from constant twitching after all it requires some energy.
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Re: I am afraid

Postby skonen on December 27th, 2012, 2:10 am

Dave, stiffness is my second most irritating symptom after the less common ringing in the ears. Rather ironically, twitching is actually lower down on the list of irritating symptoms. For me, the stiffness gets worse with continued use and if I perform many repetitive motions with any limb it will continue to grow stiffer and stiffer until it becomes painful to move. Though originally a cause of extreme distress, over the course of the last 6 months I have adapted to it just like we all should for any BFS symptom.

Your symptoms seem to be consistent with an underlying viral or bacterial infection, and may be the start of a journey with BFS. For many of us, similar symptoms of general illness/infection preceded our twitching or the twitching co-developed alongside the initial sickness. With a clean EMG, appetite issues, and no significant weakness... I do not believe you should spend any time worrying about ALS. With that being said it would be wise to be checked out by a neurologist to get a general exam if you did not receive one with your EMG, he should be able to put you at ease by confirming your symptoms are not indicative of anything debilitating.

Do you happen to be running a low grade fever? Do you know what your morning and evening oral temps are? If you have a low grade fever it adds further points to the possibility of a viral/bacterial infection (for which fatigue is very common).
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Re: I am afraid

Postby bestdave on December 28th, 2012, 2:00 pm

Skonen,

This sounds very much like what I experience. I have not noticed any fevers, but haven't checked it much. This stiffness is just very disabling for me, I can't use my left arm for very much at all. I am very worried that it is spasticity.

I have a neuro appointment next week, so hopefully will have more answers then.
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