Parkison's, MS, ALS, none of the above???

Hello All,

I'm 31 year old male. Starting 10/01/2014 I noticed that my right index finger (dominant arm) was twitching, I could see the muscle on the inside of my finger firing, having a spasm which was forcing my index finger to move away from my other fingers, it didn't hurt but I could feel it, it happened once in the morning, fired for about 4-6 times at a fast pace for about 2 seconds, and then happened again once in the afternoon, and again in the evening. When it happened in the evening I made the huge mistake of searching the internet for my symptoms the first things to come up were Parkinson's, MS, and ALS. This discovery promptly threw me into panic, a panic so bad that I could not sleep and I had to take the rest of the week off from work, I lost my appetite and all I could do was pace, it was hard just to sit down and relax.

For the first couple days my thumb and index finger on my right hand was twitching as well as my pinky on the left hand, all similar type of twitching, I could see and feel the muscle firing, there was no pain and it happened sporadically during the day, it wasn't constant. Then the twitching in my hands just stopped but it seemed to be replaced with pain. The areas around my knuckles were sore, especially on my right hand and my wrist began to hurt.

I went to my family doctor who did some basic in room movement test, blood work, and referred me to a neurologist. The blood work came back fine but she said my Creatine kinase (CK) levels were high at 400 and to get more blood work in a week. A couple days later both of my legs started having hot flashes which put me in a panic so I made a trip to the ER. They did a CT scan of my head which was normal and they took more blood, it was normal and my CK count was down to 170 which was good.

By this point my symptoms had changed yet again, my twitches were back but all over my body, legs, calfs, butt, arm, back, sometimes even my face, mainly on the right side but also sometimes on the left, some were singular twitches, others more constant and lasting longer. I also was getting pain in my right bicep as well as the area near my armpit close to my chest, and in my lower bicep muscle near my elbow crease. I was becoming more and more certain I was developing the early onset of Parkinson's or ALS.

During the neurologist visit I passed all of the in office tests which tested my balance, gait, strength, and coordination but due to my symptoms he suggested I come back for an EMG and brain MRI. MRI was normal as well as the EMG. While in the office my left shoulder was twitching and he told me he thought I was experiencing benign fasciculations. I voiced my concern regarding Parkinson's and he said I didn't have that.

My arm pain has not gone away and I don't think it's gotten worse but it's very concerning and now I have started having tingling, numbing, and soda water/ants crawling under skin sensations in my right leg. This is even more concerning as everything is happening on my right side and it involves pain which I can not avoid. Also, my right bicep is flatter than my left while relaxed but I still seem to have my strength although it does feel weird lifting with that arm. I'm so hyper aware of my body now it's driving me a little nuts, I can feel my heartbeat throughout my body.

I'll continue my doctor visits until this thing is figured out or it gets better and will update this post.

Something is still wrong with me and it's wearing me down emotionally and physically. I need to find out what's going on, anyone have any ideas? Anyone have similar experiences? I just want to figure this out at this point, good, bad, indifferent, I just want to know.

Hey- I have had a very similar experience to you, if you want the in depth story, you can go on my profile. Essentially, I had the similar symptoms, went to the neurologist, and was sent home. It's been over three months since then, and though I haven't completely moved on from my fears, they have improved. But i can tell you, your anxiety can cause a lot of symptoms, and make your fatigue and weakness worse because your body is always worked up. I still get the numbness and the spasms sometimes, but I just try to brush it off. I would suggest talking to your doctor about your anxiety if you already haven't, and perhaps talking with a counselor. Hope this helps.

Luke

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Originally Posted by lukeypoo1412

Hey- I have had a very similar experience to you, if you want the in depth story, you can go on my profile. Essentially, I had the similar symptoms, went to the neurologist, and was sent home. It's been over three months since then, and though I haven't completely moved on from my fears, they have improved. But i can tell you, your anxiety can cause a lot of symptoms, and make your fatigue and weakness worse because your body is always worked up. I still get the numbness and the spasms sometimes, but I just try to brush it off. I would suggest talking to your doctor about your anxiety if you already haven't, and perhaps talking with a counselor. Hope this helps.

Luke

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Thanks for the feedback, I"m starting to settle my fears a bit more now but my symptoms just keep getting weirder. My twitching is happening in both feet now, more so with my right, I usually feel it sitting at my desk at work or laying in bed, it feels like someone is popping pop corn under my feet, and sometimes it's more of a buzzing/quick vibration sensation instead of a twitch. Sometimes the area near the top of the inside of my right leg gets painful as well, like somethings pinched. And my right arm is the same with all it's randomness (perceived tightness from chest to elbow, sore hand, sore thumb, etc...). There seems to be no rhyme or reason to this, nothing I do seems to make it better or worse, it's just there.

Also, I just found out that my vitamin D levels were at 28 ng/ml which, apparently, is low and they want it to be > 40 ng/ml. I need to take 50,000 units of vitamin D weekly for 2 months as well as 2000 units daily, and they'll recheck my blood in 6 weeks. I'd be shocked if this was the culprit of all my symptoms though.

Waiting game continues..

Currently, the pain has remained in my shoulder and my neck but the rest of my arm doesn't feel as bad as it used to, oddly enough, my right hip decided to join the fun and is now hurting, like a soreness which seems to fluctuate from my groin area to the outside of my hip, sometimes it feels like a pressure, like an air pocket, other times it's painful. It doesn't seem to matter what position I"m in or what I"m doing, the pain is always there. Odd thing is, this is mainly just my RIGHT side, I'll have the occasional pain on my left side or a muscle twitch here and there, but it's mostly my RIGHT side that's affected.

Sometimes I have facial numbness in certain areas that seem to pass quickly and twitches in other parts of my body, fairly infrequent now but still happens daily. When all this started I immediately saw a doctor which led to a neurologist and a rheutomologist visit, I've gotten a slew of blood work done and a brain and cervical MRI, everything basically came back okay.

When all this started I was feverishly searching the internet for my symptoms and I kept getting pointed to Parkinson's.

I've gone from telling myself it's not serious to thinking it is to thinking it's not, I'm sick of being in pain daily and not know why, any help would be very much appreciated! All the doctors can't seem to find anything. I don't know what to do anymore.

Stress can make you feel as though you've been hit by a car. I kid you not.

If your doctor is happy to put your symptoms down to anxiety, then taking some major steps to combat it will inevitably make you feel a lot better. Consider meditation, therapy, or medication to help lower your stress levels.

You could also try following a program such as the one set out in the Linden Method or The Anxiety and Phobia Workbook.

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Originally Posted by HunterD

Hello All,

During the neurologist visit I passed all of the in office tests which tested my balance, gait, strength, and coordination but due to my symptoms he suggested I come back for an EMG and brain MRI. MRI was normal as well as the EMG. While in the office my left shoulder was twitching and he told me he thought I was experiencing benign fasciculations. I voiced my concern regarding Parkinson's and he said I didn't have it

I'll continue my doctor visits until this thing is figured out or it gets better and will update this post.

Something is still wrong with me and it's wearing me down emotionally and physically. I need to find out what's going on, anyone have any ideas? Anyone have similar experiences? I just want to figure this out at this point, good, bad, indifferent, I just want to know.

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Hi there,

From my own 'independent research' (so to speak... basically just frantic googling) on ALS, etc I'm fairly certain that the EMG is generally considered the standard test for ALS, so the fact that yours came back clean is a very good sign :)

As far as the physical symptoms you've been experiencing, they are associated with ALS but are more often caused by conditions that are far less severe- all of them can be caused by anxiety, for instance. Also, as far as I've heard,
ALS sufferers tend to, even in the early stages, have a very sudden onset of symptoms that never improve or subside at all (for instance, they begin to limp in one leg or can no longer button up their shirts, etc).

I also experienced basically all of those symptoms at once and it turned out to be simply the product of my bad posture and time spent hunched over a computer/guitar- is this a possibility for you?

Statically, the chance of someone your age having ALS is something like 1 in 200 million; I don't mean to invalidate your worries at all but keep that statistic in mind, as the odds are in your favour.

I'm not a doctor and your neurologist will obviously know much better than me but I hope my experience helps to ease some of your concerns and that all your tests come back fine.

Take care.

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Originally Posted by Emilym80

Hi there,

From my own 'independent research' (so to speak... basically just frantic googling) on ALS, etc I'm fairly certain that the EMG is generally considered the standard test for ALS, so the fact that yours came back clean is a very good sign :)

As far as the physical symptoms you've been experiencing, they are associated with ALS but are more often caused by conditions that are far less severe- all of them can be caused by anxiety, for instance. Also, as far as I've heard,
ALS sufferers tend to, even in the early stages, have a very sudden onset of symptoms that never improve or subside at all (for instance, they begin to limp in one leg or can no longer button up their shirts, etc).

I also experienced basically all of those symptoms at once and it turned out to be simply the product of my bad posture and time spent hunched over a computer/guitar- is this a possibility for you?

Statically, the chance of someone your age having ALS is something like 1 in 200 million; I don't mean to invalidate your worries at all but keep that statistic in mind, as the odds are in your favour.

I'm not a doctor and your neurologist will obviously know much better than me but I hope my experience helps to ease some of your concerns and that all your tests come back fine.

Take care.

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Thanks for the info! As of right now ALS really isn't a fear of mine anymore, it's been long enough (going on 4 months) with no kind of weakness/atrophy and my most troubling symptoms are PAIN and sensory issues which I've read really isn't associated with ALS. My biggest fear is PD b/c of how my symptoms started on mainly my right side (although more and more things are happening on my left now) and MS, but I really don't think it's MS as I've had a clean brain MRI and cervical spine MRI..that really just leaves PD which they test for by an in room clinical exam which I continue to pass, my neuro doesn't think it's that and refuses to try the l-dopa challenge. All I have left to try is a lumbar puncture and a muscle biopsy, if neither of those show anything..I really can't do anything else but wait..this is horrible!

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Originally Posted by HunterD

Thanks for the info! As of right now ALS really isn't a fear of mine anymore, it's been long enough (going on 4 months) with no kind of weakness/atrophy and my most troubling symptoms are PAIN and sensory issues which I've read really isn't associated with ALS. My biggest fear is PD b/c of how my symptoms started on mainly my right side (although more and more things are happening on my left now) and MS, but I really don't think it's MS as I've had a clean brain MRI and cervical spine MRI..that really just leaves PD which they test for by an in room clinical exam which I continue to pass, my neuro doesn't think it's that and refuses to try the l-dopa challenge. All I have left to try is a lumbar puncture and a muscle biopsy, if neither of those show anything..I really can't do anything else but wait..this is horrible!

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My aunt has a fairly mild form of MS (not progressive currently) and I can tell you that the onset was pretty severe and very sudden; I won't tell you exactly what happened or what her symptoms are, but it definitely doesn't sound like you have what she has at the very least, so I hope that brings you some relief, along with your MRI results.

I'm sure your neurologist would run that test for you if he was concerned that it might be Parkinson's, but I can imagine that it would be frustrating given that's what you're most worried about. The other tests don't sound like much fun, but hopefully they have the best possible outcome for you and you can finally have some peace of mind! Best wishes :)