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Yankeesgrl

Member
Joined
Mar 3, 2009
Messages
27
Reason
CALS
Diagnosis
1/2009
Country
US
State
NC
City
Asheville
I have had questions about my husbands diagnosed that I have posted about before. In the hospital when they were unsure about what was going on with him, they gave him an IVIG treatment. From what we saw he had improved lung function and felt much better. It has taken 3 months to convince the Doc's that this was real and not just in our heads.
He finally agreed to try another treatment but only with a PFT before and after treatment. He completed the second PFT on Monday. He had improvments on all of the different test. Some were improved by 16%. I don't know anything about breathing test and no one is telling me anything. We have to wait for another week and a half when his doctor gets back from vacation. Can some one tell me if this amount of improvement is good or just okay?
 
I'd say it depends on what they think it is your husband may have, for one. In any event, improvement is always a good thing and I'd say an improvement of 16% after just a few months is awesome!

Think of this way: Improvement is preferred over remaining stable. Remaining stable is preferred over declining. Declining is just what you want to avoid, above all!

Zaphoon
 
This wasn't improvement over three months. This was over 2 weeks. He didn't do anything breathing exercies....believe me I tried.
 
Sure sounds like an improvement to me. I hope he continues to improve and they agree to give him another IVIG treatment.

Good luck!
Pam B in Va
 
Thanks. They are sticking with the ALS diagnosis. I hope that the improvement is enough to make them reconsider or at least question what's going on.
 
WOW, I think I would find a new doctor! Any good doctor would dismiss ALS once improvement was seen.
 
Wow! I didn't realize you were talking about an ALS diagnosis! I agree with Joel, get another opinion!

Zaphoon
 
They haven't seen the new PFT. I have a feeling they will dismiss it and maybe that's just fear talking. So I guess the question that I'm putting out there is.....Would there be any improvement in lung fuction after IVIG if it really is ALS?
 
Agree with Joel, ALS does not respond to IVIg in any way. That's what they told me before I tried 9 treatments and... nothing.

A 16% improvement in lung function is very significant. I'm hoping you're story will turn out to be one of those fantastic cases where an ALS diagnosis is changed. We get those every once in a while with Shatzie and tag0620 and others; keeps the hope alive for all of us!

Good luck!
-Tom
 
Thanks for the feed back. It makes me feel better about the progress. I am hoping that my husband is one of those cases. He is only 36 and already on a vent 12 hours a day. He his still mobile and has use of all his extremities. Is there any one else out there with ALS that have tried IVIG? With or without improvement?
 
Hi, Yankeegrl-

My husband had 3mo. of IVIG- no improvement, but no decline. Neuro prescribed another 3mo.- slight decline after that.
 
My husbands neuro has ordered another round of IVIG with PFT's before and after again. I am taking this as a good sign. Keeping my fingers crossed.
 
Yes, I agree it is a good sign that the nuero ordered anothe round of IVIG's.....I will be keeping my fingers crossed also.....
Keep fighting for the IVIG's if they are showing improvement.
 
Hi Yankeesgirl,
I do know that there are some people who have CIDP who have phrenic nerve involvement which decreases their lung capacity, and they have been responsive to IVIG. It does sound like a second opinion would be in your husband's best interest. At least talk to his neurologist about the possibility of phrenic nerve involvement and said that you are wondering if this may be what is going on due to his response to IVIG. Good luck and let us know how things go.
Laurel
 
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