Has anyone had a trial IVIG before ALS diagnosis?

[Ems]

Hello,

My husband (43) started having ALS symptoms in March 2024. Muscle Facilitations, falling a lot, left drop foot, progressive weakness, difficulty using his hands for daily tasks. Most recently he has been unable to move his neck and his head has dropped (not a full to chin to neck drop, but he no can no longer keep head straight up).

His MRI’s were normal, EMGs abnormal.

He did test positive for the Anti-GML antibody (for MMN) but at a very low level. Neurologist has eliminated everything but mmn, myasthenia gravis or ALS. She said if he has ALS it’s an unusual progression as his drop foot (stage 2) has not worsened and that head drop is unusual.

He is starting IVIG next week. She will do three months of it (5 days in a row, every 4th week) to see if he worsens or has improvement.

I’m wondering if anyone else has had IVIG & then it not work and being the diagnosed with ALS?

 

[Nikki J]

Yes. I can’t think of anyone currently though maybe someone will speak up. It certainly is something that happens occasionally and the protocol you mention is standard. I almost had it. I had a very high antibody which startled everyone as I am a FALS carrier. Ultimately they decided to repeat it and it was normal.

I hope it turns out to be MMN

 

[Ems]

Thank you, I hope so too. I forgot to mention his reflexes are “brisk” and he has marked weakness in his right wrist as well. But no Bulbar symptoms and he can still walk (with a limp due to drop foot).

She did also send for genetic testing - but all “rare” disease bloodwork is done and all normal.

 

[ShiftKicker]

Using the forum search bar brings up a few mentions of ivig from previous posts here, so you may find some info there- but it could take some wading through posts that don't really provide much in the way of real detail.

 

[dbel]

I had an abnormal emg and also tested positive for antibodies. I was given ivig treatments with the same frequency you described. Unfortunately the weakness in my hands didn't improve so it ruled out mmn. I hope your husband responds to ivig treatments.

 

[Mary2]

Yes, My husband had back surgery in Sept 2016 and never recovered as one would expect. In 2018 an EMG at Emory in Atlanta was negative for ALS and he was diagnosed with peripheral neuropathy. He started IVIG home infusions once a month for 3 days at this time. This went on for several years but he continued to decline. In April 2021 a second EMG was done. By this time he was breathing rapidly and no longer walking. I diagnosed him with ALS the evening before we went to Emory. This EMG was positive for ALS. He immediately went on a BiPap. COVID contributed to some of the delay in diagnosis as we did not get up to Emory. Wishing the very best for your husband.

 

[Moosedog]

Short answer: So to answer to your question, yes, he received IVIG infusions for a year and then diagnosed with ALS.

Long answer:
My husband had a “failed” back surgery with significant additional neuropathy after this surgery. After many different doctors visits we landed with a neurologist who treated him for CIDP (a multiple sclerosis type disease). He received IVIG infusions for 5 months and didn’t feel much improvement and worsening symptoms. The Dr increased the IVIG dose and it helped a little bit, but not that much. Then the Dr decided to refer him to the local medical school neurology dept for evaluation. The wait for an appt was literally 8 months. So he continued IVIG. Finally saw “the professor” and his resident for a thorough evaluation x2 visits. They decided he has ALS. IVIG is not usually a treatment for ALS. We are now starting to put together his medical history and we are curious about his years of weak legs may not have been an orthopedic issue but maybe ALS? He has muscle twitches and “the professor” seemed quite interested in all the twitching that was just part of his life and not a sign of a fatal disease.

 

[Ems]

Thank you! In the last couple days his foot has unfortunately had a full drop, and his head has dropped more . He starts IVIG today, I’m hoping it works - but we are both very concerned it’s ALS and not MMN. I’ll give an update after he has the trial three months of treatment

 

[Ems]

Just an update! First round of IVIG had no results. However, his Nuero put him on Mestinon and Presidone - and the Mestinon had HUGE results. He’s able to lift & move his head again, and move his foot! Even though test came back negative for MG, she’s now testing for MuSK MG & sent genetic testing for other MG subtypes. So it looks like he doesn’t have ALS, as I believe the Mestinon would have no results with ALS if I’m correct !

 

[Nikki J]

Wonderful news. Thanks for sharing

 

[lgelb]

The answer is yes, Mestinon would not help ALS. Glad to hear these results.

 

[shaknroll]

When all this started with my husband they thought it was cipd and he did three different rounds of IVIG no change at all. Went to ALS specialist in October feeding tube in October 2024 because of significant weight loss. He declined very rapidly. From ALS passed away December 21 2024

 

[JAM]

It must have been quite a shock for you given how rapidly it all happened. I am very sorry for your loss.