IVIG and multifocal motor neuropathy

[HeatherFeather]

Morning everybody xoxo

Hubbs went to the Montreal Neurological Institute yesterday. He had another EMG and his doctor is stumped at his progression. He says that Ron's progressing faster than he expected. So much so that he is sending him for intravenous immunoglobulin therapy (IVIG) thinking that he doesn't have ALS but has multifocal motor neuropathy instead which responds to IVIG treatments. I noticed that there is a group for MMN here on this forum also.

A little info on his respiratory numbers. Nov. 5th he was at 98%. Feb. 8th he was at 87%. Yesterday he was at 73%. A BiPap machine was recommended and will be ordered and sent to our home with a nurse to show us how to use it.

We are keeping our fingers crossed about the IVIG treatments. I've read a lot on line this morning and saw that it doesn't help patients with ALS. So we will play the waiting game to see if it actually helps his numbers/EMG etc. and if so, perhaps he does have MMN instead.

Gives a little hope for poor hubbs and all of us members of his family and his friends!

On another note, I damaged a bursa a few days ago, probably trying to raise Ron up out of bed - I've always felt a twinge in my left hip. Anyway, one morning I just couldn't walk. A friend drove me to the hospital and I found out that I have bursitis in the hip prob. from repetitive motion. The doctor gave me a shot of cortisone (that was yesterday) and I am starting to move a bit better. Because of this, our local CLSC (community services center) has upped the home care help from 3 days a week, 4 hours each day, to 7 days a week, 4 hours each day - they're worried that I will injure myself again, I guess :-(

I was in so much pain and was crying that I wasn't able to help Ron when he SO needs my help - I just couldn't believe this was happening and felt so helpless

OMG thanks for listening everybody - love you guys xoxoxo

 

[Vincent]

Be very careful with IVIG. Most people experience little or no side effects, and if it works, you don't have ALS. One extremely rare side effect is blood clots. 2 neurologists I see with 25-30 years experience with IVIG had never seen this till I had them. I started out with a DVT that went on to become a pulmonary embolism. Lots of pain asnd a week in the hospital with everyone telling me I'm lucky to be alive after that. The odds of having this reaction is extremely rare, but the diseases they are looking at are rare as well. Bon chance
Vincent

 

[HeatherFeather]

Be very careful with IVIG. Most people experience little or no side effects, and if it works, you don't have ALS. One extremely rare side effect is blood clots. 2 neurologists I see with 25-30 years experience with IVIG had never seen this till I had them. I started out with a DVT that went on to become a pulmonary embolism. Lots of pain asnd a week in the hospital with everyone telling me I'm lucky to be alive after that. The odds of having this reaction is extremely rare, but the diseases they are looking at are rare as well. Bon chance
Vincent

Thanks for the info Vincent! xoxo

 

[laurel]

Knocking on wood here Heather, but my husband has been on IVIG for 2 days every 3 weeks for 8 years with a diagnosis of CIDP-MADSAM which is a motor variant that can mimic ALS symptoms. Presentation is similar to MMN without conduction blocks. A big key to success with IVIG is staying super hydrated prior to infusions and during and after. Drink, drink, drink. Also some people pre-medicate with taking something to ward of headaches. Report all symptoms to the nurse during infusion and the rate can be slowed down which usually resolves symptoms. And like Vincent says all these treatments that are so invasive are risky. Each and every time my husband goes in for his treatment I say, "drink lots, if you are itchy, short of breath, or feel odd remember to tell the nurses right away". Fingers crossed for your hubby Heather. Don't let them give up after only the loading dose as we have talked to many who it took 2-3 months for any improvement to be seen.

 

[Nuts]

Heather, my fingers and toe are crossed for your hubby!

Ouch...your poor hip! I'm glad you have more help while you heal---yes, it's important t?o take care of you so that you can care for him! Are those hours enough?

 

[mpnatx]

While I was being diagnosed, my Dr thought I might have MNN. There was a three month wait to see the ALS specialist for a second opinion. So, my Dr had me do the IVIG treatments in the hope that it would help.
Unfortunately, the treatments did not work for me and went on to be diagnosed with ALS.
The IVIG treatments were easy for me. No side effects. Just time consuming as you have to sit for several hours during the infusion.
Marty

 

[Music67]

My doctor, thinking last summer that I might have multi-focal motor neuropathy as well, had just stated to me that he was going to prescribe 3 months of IVIG treatments when he decided to do one final check on my shoulder and found UPPER motor neuron activity to go along with my lower motor activity which canceled the IVIG prescription out. He tearfully said he was sorry but that the IVIG would now be unhelpful. I sincerely hope Hubbs has better fortunes.

 

[mpnatx]

Also, it would be a good idea to check with your insurance company to see if they cover IVIG. It is very expensive!
I checked with mine, and they said they did. Then, after they said they don't. My Dr was very apologetic for the misdiagnosis and had all charges for the treatment reversed.
Hope your treatment works!

 

[HeatherFeather]

Also, it would be a good idea to check with your insurance company to see if they cover IVIG. It is very expensive!
I checked with mine, and they said they did. Then, after they said they don't. My Dr was very apologetic for the misdiagnosis and had all charges for the treatment reversed.
Hope your treatment works!

We are in Quebec and Quebec medicare covers this, apparently