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Tim-CNY

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Hi everyone, I'm another undiagnosed and I'm really just looking to vent a bit. It almost seems the waiting is worse than knowing for sure what's wrong.

I'm a 32 yo male, and my issues started nearly 2 years ago with a sort of tingling sensation deep in my left calf. No visible twitches. I brought it up with my GP but it was more of an oddity than something that was really troubling to me.

The sensation was always there, and has never gone away since that time. Further things started to crop up though, and my GP referred me to a neurologist (~1 year ago)

My full list of symptoms, some may be unrelated:
  • Tingling in calf. This is constant, but has periods where it gets stronger for a few weeks. Occasionally I do see twitches.
  • Left arm also tingles at times.
  • Muscle cramps
  • Easily fatigued left arm and left leg.
  • Perceived weakness
  • Eyelid twitches visible
  • My cheek felt numb and had visible twitching for a few days
  • Left eye started to hurt, went from 20/20 vision to 25/20 and needing glasses this year
  • I get itchy all over, with no visible rashes
  • Trouble swallowing for a few weeks. This may have been reflux.


I've run the gamut of tests:
  • CBC: Vitaman D was low. I've been taking supplements since the test with no improvements.
  • Myotonic Dystrophy negative
  • Diabetes negative
  • No atherosclerosis
  • No clinical weakness noted
  • Rheumatoid factor is high, I have an appointment in a few weeks with a specialist.
  • MRI: He said there was a small lesion on brain, but he seemed unworried about that.
  • EMG: Abnormal. He stated it looked worse in my left arm than my leg
  • NCV normal

He's said he can't explain the EMG (?), and has referred me to a neuromuscular specialist an hour away. My next EMG is scheduled for January, so I hope I'll have further answers at that time.

The internet certainly doesn't help for anxiety levels, but this forum really seems to have some good people on it. I appreciate anyone taking the time to read this.

-Tim
 

cubcake

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Hi Tim - I'm so sorry that you are in such distress. I understand completely. I seriously, really, really get it. This was the first place I posted on this forum over a year ago, and I was certain and correct that my husband had ALS. And I totally get that you feel like this waiting for an answer is excruciating and that "an answer" would bring you relief. But here's the thing.....

It's all in your mindset. You can kill yourself right now with the what if's and the what was that's, or you can decide that you just don't know and now is the time that you can have the most hope. Hope that it is something else, as it very well can be. Hope that if it is ALS, you will have a very slow progression. Hope that if your progression is slow, that they will find a way to halt it, or cure it. Your cup runneth over, Tim! You can roll with it, or you can kill it with doom.

We had a very, very wise man with us named Al, and one of the best things he ever said to me was this.

Don't cross the bridge before you get to it, or you'll pay the toll twice.

Please Tim, enjoy today. Enjoy the holidays. Go into your EMG this January with peace in your mind and hope in your heart. All of that is yours right now. Please don't sqander it.

I offer this with total respect and regret that I didn't heed these words.
 

Luke

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Hi there,

The set of symptoms you list doesn't resemble ALS, from just about everything I've learned about it. Numbness, tingling and other sensory issues point away from a motor neuron root of your problem. I'd be pushing for more information about that brain lesion if I were you, as that could well be related to any number of treatable conditions. Also, abnormalities on an EMG could have hundreds of different causes, most of which are fairly benign. Sorry you're going through this scare, but hang in there. There's still so many less serious conditions to consider before you even need to worry about something serious. Put ALS out of your mind entirely.
 

ottawa girl

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Tim,

Cubcake said it all- and with such heart. Heed her words. She knows of what she speaks.

I'm thinking (and hoping) you don't have ALS- likely something else. If only to quell your anxiety during the interminable wait, you may consider sending your EMG test results to Wright for his review and comments. He is the forum guru of all things EMG (and so much more). You can leave a visitor message on his profile.

In the meantime- I would strongly urge you to read Cubcake's thoughtful post over and over - until it sticks. Otherwise, you'll have a lousy holiday.
 

Tim-CNY

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Thank you both for your responses. I'll certainly keep myself positive for the holidays, I'll be too busy with relatives to have time to worry about this :)

I am hopeful that it's not ALS, if so it seems to be atypical. The fact that I haven't had any clinical weakness in almost 2 years I think is promising. Also it appears to have started mid-limb, not in the feet or hands.

Just called my neuro, and I'm going to pick up a copy of the EMG results tonight.
 

HelenL

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Hi Tim, I guess the main thing I'd like to add is that the sensory issues (tingling) is not indicative of ALS, and you do not have clinical weakness. In what way your EMG is "not normal"? I'd ask your doc for clarification on that. Good luck and try not to let this rule your life...
 

Tim-CNY

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Picked up my EMG results. This test was done in March, and I should have results for my second one in January. The abnormal results appear to be this section:

Needle examinationof the left biceps brachii, lateral triceps muscle, left medial gastrocnemius muscle: It shows increased insertional activity with post-insertional positive sharp waves and some fibrillations are seen. Motor units were small in amplitude and short in duration with rapid recruitment.

COMMENTS: Nerve conduction studies in the left upper and both lower extremities, motor and sensory are within normal limits. The needle examinations however shows myopathic abnormality in some of the muscles sampled.

IMPRESSION:
  1. There is electrophysiological evidence suggestive for a primary muscle disease
  2. There is no evidence for significant peripheral polyneuropathy
  3. There is no evidence for left median neuropathy at the wrist the left ulnar neuropathy at the elbow
  4. There is no evidence for left cervical adenopathy from C5 to C8-T1
  5. There is no evidence for lumbosacral radiculopathy from L3 to L5-S1 on either side


Thanks,
Tim
 

rose

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Tim,

As you said, waiting can be excruciatingly hard, but, you do have answers within this report. (partial quote pasted below).

Picked up my EMG results. This test was done in March, and I should have results for my second one in January. The abnormal results appear to be this section:

The needle examinations however shows myopathic abnormality in some of the muscles sampled....

IMPRESSION:
  1. There is electrophysiological evidence suggestive for a primary muscle disease
    ]


  1. The neurologist found that you have signs consistent with a primary myopathy. That is an answer.

    This meaning implies that the primary defect is within the muscle, as opposed to the nerves. And believe me, if the neurologist who performed and interpreted the test results saw signs pointing toward motorneuronopathy, (i.e. the family of diseases that include ALS) the report would have said this, instead of myopathy. These are distinctly different diseases.

    It isn't a complete answer, but it is a direction for your doctors to look in.

    There are all kinds of myopathies—metabolic, inherited, and so forth.

    Be prepared for even more diagnostic tests, and yes. the diagnostic journey can be long, but, at least your doctors have information to direct them where they should be looking.

    The very best of luck to you. Please let us know what your diagnosis is.
 

wright

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As Rose said, you have your answer: you have a myopathy ("myo" means "muscle" and "athy" means "disease of"). Your EMG indicates that something is damaging your muscles. Your nerves are not being damaged and your motor neurons are not being damaged. Therefore, according to the results of your EMG that you have shared with us, YOU DO NOT HAVE ALS. The next step is to determine what is damaging your muscles. Leave that up to your physicians.

As far as your other symptoms: they could be related to what is happening to your muscles (i.e. whatever is damaging your muscles could be damaging other tissues in your body) or they might not be related. Again, leave that up to your physicians.

I wish you the best.
 

Tim-CNY

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Thanks everyone, not sure why my neuro would evade my question when I asked what he thought I had.

Good luck to all.

-Tim
 

vickim

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Your doctor evaded your question probably because he is not sure. This is a process of elimination. It will take patience and time to figure it all out. You know what you don't have and that is good. Mine took 5 years, but now I know and then you go from there. I am not saying it will take 5 years. Just listen to your doctor, ask questions and be patient. It's hard but you will get there. Do what you can and leave the rest to the powers that be. Good luck!
 
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