Day Three of IVIg

Although I do not have a diagnosis....My Doctor started me on IVIg with a 5 day dose. So far I am not feeling any changes....should I see changes within 24 to 48 hours after start ing the five day dose?

I was on IVIg for 2 years. I used to feel very sick at times and other times I felt very strong. It worked I believed for me for awhile but after 8 months or so it stop working as well although I wanted to believe otherwise. The IVIg was provided at my home by a home health nurse it took 4-5 hours and I used to feel like I just had a real serious transplant. But i thought I was going to be cured. No cigar. I am now on a wheel chair and I am not able to care for myself. I have an attendant 7 days per week. My hands are ok. Good luck to you!

Hi Butler. Obviously you are getting your first loading dose of IVIG. It really varies amongst people how soon they notice positive effect from the IVIG. Some notice almost immediately and others a few weeks. My hubby has CIDP and not MMN, and he noticed some hand strength improvement during his first loading dose. The IVIG won't repair damage done but does prevent further major damage. Hubby does relatively well on IVIG, but has some minor decline since he started on it in 2007. I hope it works well for you. Peg who has MMN will likely jump in and offer personal experience.
Laurel

Hi Butler,

Hey Laura, thanks for the introduction! I would have jumped in sooner but did not see the post. I do have MMN but because of a change in insurance/pharmacy this Jan 1, 2012 I have not had IVIG since Dec 27, 2011. I had IVIG every two weeks for about 2 years and then every 3 weeks for the last 3. I started Jan 7, 2007. And because I did respond, ie did not get worse, my diagnosis was changed from ALS to MMN.

Since not having IVIG for about 7 and 1/2 weeks, I have been amazed at how quickly I have to some degree deterioated. So even if it seemed that IVIG was not working, I can tell you without a doubt it was. (Ironically I got a port put in my chest, in Nov. 2011 as I was "going to be on IVIG for a really long time.)

A few days ago it took me almost 5 full minutes to write my name, address and phone number on a little ticket stub, the pen kept slipping through my fingers. Also the "p" on the computer is difficult to push and I need to use my full hand to push it down. These are the same things that helped make it impossible for me to do my job after 36 years. I haven't fallen yet but the other day I missed the bottom stair and had to catch myself. My right hand cramps every few minutes when I am using it. Not so much when it is at rest. It just spases and pulls together. It does not hurt, just feels funny. Muscles on my right hand are still atrophied and I cannot move my baby finger much at all-worse now.

Fortunately for me, I have worked out at a gym and after 2 years I can walk fast in the gym where I know the floor and I totally focus. I stumble if I talk or look around. The treatment let me do this, I could never have done it before IVIG, and now so far, I can continue even without treatment and that is again such a blessing.

What IVIG has done for me is really slow down my progression. It allowed me to work out and I also lost about 35 pounds over the last few years. So getting treatment and doing what I could to lose weight and exercise have been the best things for me.

I hope I can fix things (money :razz and get back on treatment and I hope it works well for you. Best Wishes, Peg

Peg

Peg

My issues started in my feet and now lower legs....I have numbness in my left foot left toes...and tingling around my foot. I cannot feel heat or cold on my foot. I have had two falls this week because of foot drop...so I am thinking about getting some type of a brace. Maybe that will help the falling...although, I feel I am getting weaker in my legs. I have a two day IVIg scheduled at the beginning of March.

My wife is Canadian and was thinking of visiting the Hosipital in Detroit.....

Thanks for you advice and information.

Terry

Terry,
Get the AFO's! They're a great help. You can do a search of the forums to see what others have to say about them. Rose even posted some photos of hers.

Sorry to be so dumb, what is IVIG?

Hi Lady...

Not dumb just not in your vocabulary yet. It stands for Intravenous immunoglobulin and is an IV infusion of blood products because those of us with autoimmune diseased need other people blood because we attack our own blood works - veins and such.

Now I don't know what AFO's are in the sense used above. It made me think of UFO's but I assume there is no connection. Best Wishes, Peg

Peg B, thank you for that info but have never heard of that. AFO stands for ankle foot orthotic, a brace for the ankle and foot. Also I noticed you said you have MMN, what is that? Do ALS patients get these infusions?

Hi Lady..

No unfortunately, ALS patients do not respond to IVIG. I was first diagnosed with ALS, but because my progression was so slow, the university neurorologist where I went for the 2nd opinion, put me on IVIG to see if I woud respond. So that was part of the diagnostic trial for me and since I did respond then MMN was the diagnosis eventually. MMN is often mistaken for ALS.

I was most fortunate. MMN is an autiomune disease where our own antibodies attack our lower nerves (milan sheaths around the nerve) but not the upper ones. It stands for multifocal motor neuropathy.

"Multifocal motor neuropathy (MMN) with conduction block is an acquired immune-mediated demyelinating neuropathy with slowly progressive weakness, fasciculations, and cramping, without significant sensory involvement.

Clinically, it may resemble amyotrophic lateral sclerosis (ALS) with predominant lower motor neuron involvement, but muscle atrophy and more rapid progression are lacking. Duration of disease prior to diagnosis ranges from several months to more than 15 years.

Unlike ALS, MMN usually responds to treatment with intravenous immunoglobulin (IVIG) or cyclophosphamide, even after many years of duration."

Hope this helps. Take Good Care, Peg