ALS and IVIG Treatment

[JCKJLUP]

I was diagnosed with ALS last October. It has affected My right hand and arm significantly. Since I am right handed it makes most tasks difficult. My left hand and arm have also weakened. My legs, speech and swallowing are fine. I will be starting IVIG treatment in January. Has this treatment helped anyone?

Joe

 

[Nikki J]

What is the reason for the IVIG. Is there question as to your diagnosis? It really hasn’t been found helpful on ALS but is sometimes given if there is a chance it is something else like MMN

I hope you are seeing an ALS specialist. Ask them what their reasoning is

 

[Mary2]

Did you start on Riluzole or Radicava?

 

[JCKJLUP]

One of my Neurologists thought I it may be possible I have MMN and the IVIG could support that diagnosis.

 

[JCKJLUP]

I am taking Riluzole. I am seeing an ALS specialist at Mayo Clinic in Arizona. She said she didn’t think it would help but if I wanted to get treatment she’s would monitor it

 

[gumgirl]

I
It didn't help me one bit and cost me $3000

 

[JAM]

Gumgirl did they think you might have MMN, is that why they tried it, to rule that out?

 

[gumgirl]

Yes.

 

[JAM]

Why did they think that it was MMN? Blood work?

 

[gumgirl]

Yes, bloodwork. But, this was before I was officially diagnosed with ALS