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SJones

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Looking for advice please. My symptoms began a year and a half ago. Left leg muscle cramping with twitching in that same thigh muscle. I'm not going to ramble each detail but advancing to today progression has been constant involving both legs, very weak, cramping and twitching muscles in both. I have seen neuromuscular drs telling them all my symptoms and progression. Hard to walk. Had FVC test done in Feb showed slight weakness of chest. Have consistent hyperflexia and bilat Hoffman sign per each neuromuscular exam. Have excessive salivation and mucous in throat last couple months. Z I tell my recent neuromuscular Dr all of this but just says see u in 6 months can't give u a diagnosis now but it might be MND I have had every blood test,scan, muscle biopsy MRI. U name it all negative except slight lower spine issues. See same neuromuscular Dr tomorrow because I can't wait 6 months. I am suffering. Should I demand another emg? Muscle biopsy was done for myopathies neg results. Arms are cramping etc. I'm a mess. 1st 2 emg's showed L5S1 mild problems. Last emg I will show. Lousy at attaching files. Thank you for your valuable time
 

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Hello there-

Your EMG result images contained personal and identifying information, so we removed. If you'd like to post them, please make sure to obscure your name, BD, and all other identifying information.

Re: Symptoms.

Being in limbo is a very hard place to be. Sometimes doctors have a sense of where it may be going, but there are not enough symptoms to fit the criteria for an official diagnosis. It is completely reasonable to ask what your neuro is considering and let them know you are in need of assistance with the daily effects of your symptoms. I am not sure if you've been provided any treatment for your symptoms, but a diagnosis is not needed in order to get relief from things that are making it harder for activities of daily living.

Hopefully your appointment tomorrow will provide you with more information. I am sorry you are struggling- not knowing what to expect is hard.
 

SJones

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Thank you for your input. I know you are not here in this forum to diagnose but with all of this progression and all else ruled out do you think this is ALS? Each day is harder less mobility etc. Emg's drs say no ALS but nothing else is showing up. I am thinking about cancelling tomorrow appointment thinking they feel like I am nuts. Don't know what to do or ask them if I do go.
 

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What did the summary report say at the end of your last EMG?
 

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If a neuro really thought MND still part of the differential, I should think they would arrange for a sooner than six-month followup. So I really can't make much sense of this. It also doesn't make a lot of sense to say, "nothing else is showing up." First off, that's a good thing. Second, it doesn't leave ALS alone at the table, esp. with two negative EMGs and lack of neurology concern for MND.

Not every issue may relate to the others, or to any significant disease. It's not just what you "tell" the doc, it's what they can see in your presentation. It doesn't sound like they're seeing that much. And that's good news! It also suggests keeping in touch with a good internist who can continue to rule out systemic illness.

Best,
Laurie
 

SJones

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Thank you for listening again. Had appointment with neuromuscular Dr. She did very quick clinical exam this time and said my strengths were stable. Each day is worse for me. Pain in legs and hard to walk. Arms aching. All in muscles pain is constant except at rest.. Very stiff. Hyperflexia and Hoffman sign bilaterally remain. All rheumatological, immune, MRIs, inflammatory, muscle biopsy for myopathies , entire spine checked only mild stenosis. I feel this is definite progressio.n each day. But don't understand why they can't diagnose me.until I fall over or whatever. Been in pain management for a year. Doesn't help. Massage, drugs, acupuncture etc. Thought 3 emg's would of showed something to help with diagnosis by now. Year and a half. I will try to post my last emg with notes as you requested . Thank you
 

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You did not answer with what the summary at the end of the EMG said.
I would like to reassure you that just because they haven't yet diagnosed you, does not mean it must be ALS, in fact it seems you have had 3 clear EMG's. I wonder why you believe it isn't all the other things they have ruled out, but don't believe they have ruled out ALS which is what it sounds like. You are right - 3 EMGS over this period would have showed ALS if that was what is going on. So without the hallmark of failures and EMG findings, the answer lies somewhere else.

I wish we could help you, but we don't disagree with doctors who examine you and run tests. Pain is awful, I'm sorry you have all this happening.
 

SJones

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I will try to post emg and summary again. I'm so sorry I am not used to sending images or anything . All 3 emg's have been done within a year. Symptoms have been for year and a half. I have read your statement about emg's being done too soon. Answer is no from what I remember. Neuro other day did say on exam left leg has some thinning compared to right but no weakness although it's weak to me for long time. But strength stable. Sorry to go on. Dr said something PROBABLY would of showed up by now if MND. Just hard to get it out of my head. Patients hang onto ever word the doc says. Any input would be wonderful. I don't disagree with the Drs but symptoms I feel and some clinical by Neuro hyperflexia Hoffman etc aren't going away. Thank you . Your time is valuable I know and I respect and appreciate all of you
 

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Bestfriends14

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It says clearly that your EMG is normal and shows no signs of MND. That is great news and should be reason to celebrate. You not doing so and choosing to hang onto words your doc has not said, is a choice you make. Again, we're not hear to disagree with your docs. 3 EMGs can't be any more explicit about you not having ALS.

I hope you can accept this.

Take good care
 

affected

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Thanks so much for posting that. Definitely you can be assured, that is NOT the kind of EMG we see with ALS, even in very early stages.
No doctor will say they can 100% guarantee you can't develop ALS in this world of medial law suits. Don't take that to mean he thinks just maybe you will. All the very best, you can work through this.
 

SJones

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Today had appt with new regular neurology doc appt was scheduled long ago so I decided to go. He said emg's that I had are not good for umn dom diagnosis they miss it alot. Especially with my Hoffman , hyperflexia, atrophy, mouth salivation. He wouldn't diagnose me but referred me back to neuromuscular I've been working with since he couldn't see any of my previously testing except the emg's I brought in. I'm in anxiety overdrive again. Each day worse symptom progression. Anyone know about FREE copper testing and how to get it? Any input would be greatly appreciated.
 

affected

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It would be suspect if a regular neurologist diagnosed you when a neuromuscular specialist says in black and white that you don't have ALS.

I can only say, work with the specialist, stop googling and trying to get your own answers.
If you can't control your anxiety, your doctor is where you need to get to quickly as you can get help.

Please remember that we have answered you on your symptoms and EMG, we can't keep holding your hand and reassuring over and over every time you jump into a new wave of anxiety. I am so sorry you are going through this, for your own sake, please get help, and stop fanning the flames of your anxiety fire
 

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It is well-known that standard EMGs will not see upper motor neuron dysfunction. A diagnosis of ALS requires both upper and lower motor neuron damage. Pure upper motor neuron disease can be diagnosed through other means, but I haven't seen it in your description. Nor have I seen confirmation that the docs have seen clinical atrophy and/or weakness. Reflexes are seldom revealing in themselves, are subject to varied interpretations, and may wax and wane.

I fail to see how testing your Cu level would advance the diagnostic process at this point. My best advice is to follow out the diagnostic process (maybe see a rehab specialist and/or PT to baseline any issues with strength), and seek better pain management if you need it, but stop reading otherwise, and keep living. Don't hold your life hostage to this, because you don't get this time back.
 
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SJones

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Going to try and calm down but it's hard. Will listen to the docs and continue with the diagnostic process. Thanks to all for listening and your comments
 

affected

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It is hard, and I wish you the best.
Just remember that the forum here is for the terminally ill and their carers, and we allow you to ask a question. Now that you have been answered, you need to move back to working with your doctors who are the only ones that can do anything for you.
 
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