HELP! Dr. says ALS “Highly likely”

[Dusty7]

Be prepared with a written list of all your questions... and get a copy of the old EMG if you haven't already...

What do you think is causing the symptoms?
What else could it be?
What other tests do we need to do to firm up the diagnosis?
Is there evidence of acute denervation? Chronic denervation? Is it widespread? Which body regions? Which muscles?
Are there signs of clinical weakness? Atrophy?
Are there any UMN signs? Hyperreflexia? Spasticity?

If he does a new EMG, get a copy. Be prepared to take lots of notes.

Know the meaning of all of the above terms. My experience is that doctors will be more willing to spend the time to explain things if they think you have done your homework and can understand the medical terms they are using.

Try not to let your boyfriend stress out as anxiety can cause psychological symptoms that can clutter up the clinical exam and make the neuro's work harder.

Think positive. Fasciculations for two years with no other symptoms does not sound like ALS to me. It does not sound like he is showing any weakness, other than the hand and CTS is more common than ALS. Fibs by themselves are not conclusive. Keep your spirits up and all of us here will be wishing you luck.

 

[Blondrea]

Thank you so very much. You are bringing up a lot of terms that I am completely unfamiliar with, even after reading obsessively. I thank you so much for that. Your generosity is overwhelming.

 

[Blondrea]

As of this morning, he lost strength in his left hand. (The one the neurologist deemed weak.) He was unable to use a key to unlock our front gate for the first time ever. A little while later, a bit of strength came back (he determined this by opening a paper clamp that he was unable to open right after the key incident). Then, all strength was once again sapped. We are terrified. Does anyone know if hand strength can be intermittent with ALS? IE, once strength goes away, does it ever come back? Thank you in advance for any input you might have. Your insight is priceless.

 

[Nikki J]

No need to post twice. Better to keep to one thread
Generally once something is lost to ALS it is gone but when you are not tired sometimes you can do a little more than when you are exhausted. Try not to panic over each thing sometimes anxiety can make it hard to do something and I am sure your bf picks up on your fear. Your neuro appointment is soon. Concentrate on your question list and educating yourself on the things Dusty mentioned

 

[gooseberry]

Blondrea, I keep a list of these things so when we go to the dr we have a specific example of "hand weakness". That seems to help them more than us trying to explain amount of force needed, grade how hard he tried to do something, etc

 

[Dusty7]

I even take props with me--an aluminum 12 oz can to show him how much I can squeeze it--very little with left hand, no problem with right. This way he can also see which muscles are flexing and which ones don't work at all.

Taking the can from the last session allows him to see progression of weakness.

 

[Blondrea]

I can not thank you enough for your input and insight. Thank you. We will keep very detailed notes to share with the ALS specialist, our appointment is on Nov. 13. Thank you, dear friends. You are wonderful.

 

[Blondrea]

Met with the specialist today. Very bad. She won't say for sure it is ALS, but said she can't think of anything else it might be, since all else has been ruled out. She detected brisk reflex in hand (sign of upper motor neuron problem) and weakness and bad EMG (sign of lower motor neuron problem). She said it might be a slow-moving form of ALS. My boyfriend is a strong, healthy seeming guy. He only went in for testing because of muscle twitches. He's had them for two years, so we thought, surely more obvious signs would have reared their heads by now. Nothing we could see. Very sad.

 

[MaxEidswick]

>Met with the specialist today. Very bad. She won't say for sure it is ALS, but said she can't think of anything else it might be, since all else has been ruled out.

can you get a second opinion from an ALS specialty clinic? Appel's diag clinic takes 3 days ...

better to know ... sorry you are not getting positive answers.

kind regarsd,



Max - Thursday, November 13, 2014 3:40:14 PM

ALS sucks, but It Is What It Is ... and someone else has it worse so I'll try not to complain today!
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013


.

 

[Blondrea]

Thank you, Max. Yes, at some point, we will get a second opinion. I am frankly stunned. I thought that we would leave today with promising news. "He's has twitches for two years with no other outward signs? Couldn't possibly be ALS!" Nope. And that the specialist found upper motor neuron problems was shocking to me. Upper. Lower. Twitches. Clean MRI. Dirty EMG. Not good. Thank you so much for your support. Very sincerely appreciated.

 

[laurel]

Blondrea please get the second opinion asap. There are other diseases that can mimic ALS such as Multifocal Motor Neuropathy and CIDP. Did the specialist speak of other conditions that can mimic? Did he have blood taken and sent for motor sensory panels, did he have lumbar puncture? Good luck with whatever it is you two face.

 

[Blondrea]

Hi, Laurel. We asked the specialist if it could be anything else, she went sort of mute, and said that they had tested for pretty much everything else. That it could be some rare genetic disorder, but those would have other accompanying symptoms. She reluctantly mentioned a blood test that would detect an autoimmune disease, so they drew blood. The original neurologist (the one who referred us to the specialist) looked at the results of today's visit, and suggested that there is a slight chance it might be Kennedy's (is that Multifocal Motor Neuropathy?). Not sure if the blood test will check for CIDP. Thanks so much for your suggestions.

 

[Bliz]

Blondrea, Kennedy's disease is a form of MND (x-linked, hence affecting only men) that basically does not shorten lifespan. However, there are no upper motor neuron signs, it is a pure LMN syndrome affecting spinal and bulbar regions. How old is your boyfriend?

It is, indeed, very strange to have fasciculations for two years and now developALS. Sometimes the nature of fasciculations (and presence of cramps) can be a clue. As suggested by recent studies, those with persistent and multifocal distribution of fasciculations (meaning they appear in a few places in one muscle at the same time and go nearly all the time) are more suspected to have MND. Those with benign fasciculations often have occasionall twitches. Myself, I have had fasciculations for 7,5 years, even in the tongue, but usually I get a few per hour.

 

[Dusty7]

"She reluctantly mentioned a blood test that would detect an autoimmune disease, so they drew blood."

I had 12 vials of blood drawn and the the MMN test takes about 3 weeks to get results. How long has it been since blood was drawn? Don't accept ALS diagnosis until everything else has been ruled out and you have received a second opinion from an ALS specialist.

 

[Blondrea]

Thank, you. They drew two vials of blood. With one, they tested the...AMD levels? (The thing that indicates muscle degeneration.) Not sure what they are doing with the other vial. Thanks so much for the info. We are still holding out hope. I greatly appreciate your wisdom.