Thomas3857

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Thanks for your replies and advice. I specifically asked the neuro what was his gut feeling after he gave me a generic answer like Al stated he should have so I pushed for a specific percentage and he said 80/20. Wish I hadn’t asked now! I asked about the prior clean EMG and doesn’t that rule out ALS and he said it rules it out at that time but it was possible that the emg was done too early in the disease progression. He said waiting to watch for progression and another emg was the best course of action. Wishing everyone the best. Thanks - Tom
 

Thomas3857

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Scheduled an appointment with a new doc - a neuromuscular specialist in September. Assuming a clean EMG done early May was clean because ALS started with UMN (noticed clonus in early March) and hadnt progressed yet to LMN does anyone have thoughts regarding an ideal length of time to wait between EMGs assuming no new or worsening symptoms?

Also, my neuro said be alert for weakness and swallowing issues as I wait for my next appointment. I asked specifically about defining weakness and he said if I used to do 20 reps in the gym and now can do only 10 that’s a sign of weakness. I understand that’s not the same as clinical weakness but am curious as to other signs of weakness experienced. Is there a period where you feel arthritic or sore as weakness begins?

As always I appreciate your insights more than you can know. I hope all fathers out there have a great day tomorrow! Thanks - Tom
 

Nikki J

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6 months is standard at my clinic if they are following something worrisome I am told. Sometimes when you go to a new doctor they want their own EMG anyway.

I have never felt any discomfort anywhere - not before weakness at onset or later. ( I do get cramps but they are another issue). Discomfort often comes later in the weakness process due to immobility and poorly supported joints
 

Thomas3857

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Thanks Nikki - that directly answered my question. Tom
 

lgelb

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I agree, a neuro who said that is out to lunch. If you need follow-up for reassurance, find another one. But a lot of people have abnormalities on the NCS that come to nothing. As for reflexes and clonus, they only matter if/as they affect what you can do. And as Al says, play your own hand.
 

Thomas3857

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Hi all - Wanted to get some opinions on what my next move should be.

1- I can wait until September for a consult with a local neuromuscular specialist who heads our local clinic. Pro is he’s local but I would expect a longer delay in any diagnosis as the testing process begins again.

My other option is a July 3 appointment at Mayo. Pro is it appears to be a top notch facility and testing results likely much quicker. Cons are the expense and I’m nearly 1000 miles away so follow ups will be difficult.

I know this is a long thread so I’ll summarize my symptoms.

Facs noticed in December 95% in calves. Clonus noticed in early March which sent me to neuroin April. He noted the clonus in ankle and otherwise hyper reflexive asymmetrical. Other parts of clinical exam normal including strength

EMG at beginning of May normal but noted the facs. MRI and blood work normal.

Within last 2 weeks noted trigger finger in left ring. Seems to get stuck on extension and pops into place upon contraction. What feels like arthritic pain in shoulder joints and wrists and in general most of my joints pop when in motion. Left hand is noticeable less muscular and smaller but it could have been like that for years and I just never noticed. Grip strength appears identical.

Is there any benefit to going to mayo to have tests re done that were done within last two months or am I better off watching my ptogession and wait until September? Can an emg vary within 60 days?

Curious as well if anyone has mayo experience - tips? Thanks as always for taking the time to read this.

Tom
 

Nikki J

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My clinic ( Mass General) usually has people they are worried about repeat an emg in 6 months. If you have faith in your current doctor I think I would follow up there. Some neuro things take time to diagnose. A second opinion is not a bad thing but if you go now and don’t get an answer would you keep going?

There are ALS clinics in Universities closer to your stated location than any of the Mayos
 

Thomas3857

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Thanks Nikki - my concern is I go to Mayo and still no answers due to limited time between emgs and other tests than I’ve wasted more time and money not to mention emotional toll. I may try. Vanderbilt or I hear St. Louis has a terrific program at one of their universities. Just frustrated with being in diagnostic limbo and my current neuro has essentially said let’s see what happens in 90 days and he has no other tests scheduled. It is what it is. Thanks again for your advice. Tom
 

lgelb

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I don't see any reason to go to/pay to travel to Mayo.

Vandy, Emory or Barnes-Jewish/Wash U are all good regional options for a second opinion.
 

Nikki J

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90 days is a reasonable follow up time for this. If you do want a different opinion a friend just started at Wash U after a relocation and is very happy with their care.
 

Thomas3857

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Thanks everyone - I’ll start making some calls tomorrow.
 

Jhettinger

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How is your writing ? Sounds simple, but just a thought.
 

Thomas3857

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Haven’t noticed any changes but have noticed an acheness in the joints after typing or writing.
 

MarieLaure

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Thomas a psychiatrist is no more qualified to diagnose a neuro disease than a dentist to diagnose a psychological or broken bone problem.
 

Thomas3857

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I know. I’m discounting his opinion. I’ve decided to go to Mayo Rochester with apt on 7/3 and see what they can discover. Thanks everyone for your responses. I’ll post an update once I return. Hope everyone has a great weekend. Tom
 
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