Could this be als?

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Nikki J

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If your doctor saw all that then they surely have a plan to pursue this. You can probably get an idea from the aftercare summary because that will list the tests ordered even if the full note isn’t on the portal yet. Did they order a ganglioside antibody panel ( might also be called Washington University neuromuscular panel)? Other antibody test?

lack of atrophy doesn’t rule out ALS though and having it does not diagnose ALS. the doctor may well have a hunch about what this is and is pursuing that. If he suspected ALS it would be easy enough to order an emg and refer you to the als clinic. I encourage you to read his note when it shows up on the portal. It may help you understand his plan
 

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He has not ordered that test. He does have EMG as a follow up. He was through but kept saying it’s very rare. My symptoms are literally getting worse by the day. It’s not in my head my family has noticed as well. Is there any hope for treatment. Everything points to 2-5 years and always terminal.
 

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Can anyone suggest ways to move things along? My MRI came back clear and waiting for the EMG but I feel like symptoms are moving faster than the healthcare system. From my research sounds like getting treatment early helps slow things a bit? I’m devastated.
 

Nikki J

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If you have an emg scheduled you can ask about a waiting list. People do cancel for a variety of reasons.

I don’t know if it is reasonable but you could ask if you could have an appointment in the ALS clinic. Your neurologist may well say no wait for the emg and that is probably the right answer but you can ask. The clinic usually reviews records and may refuse without an emg.

a few weeks isn’t going to make a difference if this is ALS.
 

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I feel like it’s much more advanced. I have difficulty swallowing that has gotten much worse in the past month. and have lost half of the function in my hands as well as the cramping twitching getting worse. I don’t want to lose anymore precious time. There so much to prepare
 

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Sorry to keep answer shopping but is there anything that mimics ALS? I’m desperate as you can see
 

Nikki J

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There a number of neuropathies. As well as some systemic conditions. Most are treatable I have been trying to figure out how to phrase this as I do not want to be cruel. If you are reporting accurately and if this is a very very atypical ALS it is highly aggressive as day to day noticeable progression is not at all usual then the currently available treatments aren’t going to help significantly- if at all.

you need to talk to your neurologist and see what he thinks your differential is. He may be able to expedite the emg which will help rule things in or out- not just ALS.

not sure what you mean by much to prepare. Everyone should have their affairs in order. We could get run over crossing Cambridge st en route to an appointment
 

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Nikki gives good advice, on all counts. This could be a time to make sure everything is in place, and to enjoy spring doing whatever you love most, without making assumptions about what is wrong.

There are certainly ALS mimics, most of which are more treatable.
 

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I appreciate the honesty.
 

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I’m am waiting on my EMG appointment. Is it common for symptoms to come and go? I feel like when I first wake up I seem to be very unsteady and my neck is very sore. I have periods during the day when the fasciculation is constant and times when it’s fine. I can use my hands and then sometimes they give out. I can swallow with water and small bites then sometimes I chicken regardless. I’ve lost about 10 lbs in the past 2 weeks. Any advise for the muscle pains?
 

Nikki J

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no it isn’t common for symptoms in AlS to come and go. We may get a little worse as the day goes on due to fatigue. However the things that are gone are gone. twitches no matter what their cause are usually not constant.

since muscle pain is not a usual AlS symptom I have no advice.

have you seen an ent
 

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I may not be describing it correctly. It’s more tiredness and muscle fatigue. The twitches are in my legs and feet mostly and happen about every 2-10 minutes throughout the day when my body isn’t in motion . Is there anything to help relieve those? I am also waiting to see my GP for an anxiety med. I can not stop bursting into tears. Any recommendations on meds that have worked for others? I know I’m still awaiting my diagnosis but my nuerologist is leaning towards this if MS now that MS had been ruled out. Which he confirmed yesterday it was. He indicated it’s very rare but presenting as such. Following the data for final diagnosis but likely . He reviewed the after summary review per your request and he has identified a motor neuron disease as mentioned ; confirmed all labs and MRIs are perfect no abnormalities at all. A slight disk bulge due age and water and tear. I know you said we should all have our affairs in order as we could get hit by a bus at anytime. But of course like many the basics are done with kids lots of things to tie up. I have a 15 year old so ensuring he is set up for success without me. I’m rocked to the core. And so so so sad
 

Nikki J

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Magnesium helps some people with twitches whatever the cause
 

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Thank you. I’m not handling this well and I’m sorry if I’m being annoying. I’m just gutted. I know you are all helpful and resourceful and will need to lean on you I’m appreciative that this forum is here
 

Nikki J

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Ask for a referral to counseling to deal with this. I know generally it is hard to get a therapist right now but maybe ask your neurologist. I was offered a referral last time I was at clinic ( which I didn’t feel I needed so didn’t pursue) but my sense was they had someone in mind

when is the emg?
 
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