pmbenb83
Distinguished member
- Joined
- Aug 6, 2007
- Messages
- 400
- Diagnosis
- 03/2008
- Country
- US
- State
- VA
- City
- Stafford
Hello everyone,
I'm not sure if this qualifies as a "story of hope", but for our family it is a "glimmer of hope." After being bounced around to different doctors for 11 months, many EMGs, etc., my husband was told in early October that they were leaning toward atypical ALS. Thankfully my husband, being pigheaded, spoke up and said that he would be a guinea pig and would like to try the IVIg treatment for MMN, which was the other diagnosis they thought he might have, but his GM1 didn't support it. That kind of scared me for him to say that to doctors at a "teaching hospital". Their eyes really lit up. lol After the doctors consulted each other, they said that he could give it a shot and explained everything in detail.
Over the past 2 weeks, my husband had the IVIg infusion, which made him severely sick, but he now has more energy and he said, "I feel like my old self." His right arm was his weakest extremity and he could barely lift it up to feed himself. Without thinking, he raised his right arm up and put it behind his head to pull up his pillow during the infusion. We both looked at each other with shock and amazement, because he hasn't been able to do this for over a year. Little moments like this have been happening this week, which gives us our "glimmer of hope" that this might work. We are still very cautiously optimistic, but are on the verge of shouting from the rooftop! He has also gone up on his dumbbell weight from 2.5 lbs to 5 lbs, which to him is nothing since he was used to benching 300 lbs. He knows that he has to take baby steps, as to preserve his muscle that is left.
Tonight was our measuring night, which we have been doing weekly and he has gained 1/4" in his right bicep, left bicep, neck, and chest. Another "glimmer of hope" that we hope continues.
It is so hard not to get excited and I have butterflies just typing this, but I am also feeling the need to protect ourselves from a possible let down. What an emotional roller coaster!
As we have more "glimmers of hope", I will be sure to post again in this new section. This is a great addition!
I also want to personally say thanks to Jamie, Peg, and Patty for all of your PMs and suggestions of what to ask the doctors. The MMN might have been THE question. Thank God for this forum or we might not have seen this glimmer at all.
Sending you all my best and hope you all have stories of hope to share real soon!
Take care,
Pam B in Va
I'm not sure if this qualifies as a "story of hope", but for our family it is a "glimmer of hope." After being bounced around to different doctors for 11 months, many EMGs, etc., my husband was told in early October that they were leaning toward atypical ALS. Thankfully my husband, being pigheaded, spoke up and said that he would be a guinea pig and would like to try the IVIg treatment for MMN, which was the other diagnosis they thought he might have, but his GM1 didn't support it. That kind of scared me for him to say that to doctors at a "teaching hospital". Their eyes really lit up. lol After the doctors consulted each other, they said that he could give it a shot and explained everything in detail.
Over the past 2 weeks, my husband had the IVIg infusion, which made him severely sick, but he now has more energy and he said, "I feel like my old self." His right arm was his weakest extremity and he could barely lift it up to feed himself. Without thinking, he raised his right arm up and put it behind his head to pull up his pillow during the infusion. We both looked at each other with shock and amazement, because he hasn't been able to do this for over a year. Little moments like this have been happening this week, which gives us our "glimmer of hope" that this might work. We are still very cautiously optimistic, but are on the verge of shouting from the rooftop! He has also gone up on his dumbbell weight from 2.5 lbs to 5 lbs, which to him is nothing since he was used to benching 300 lbs. He knows that he has to take baby steps, as to preserve his muscle that is left.
Tonight was our measuring night, which we have been doing weekly and he has gained 1/4" in his right bicep, left bicep, neck, and chest. Another "glimmer of hope" that we hope continues.

As we have more "glimmers of hope", I will be sure to post again in this new section. This is a great addition!
I also want to personally say thanks to Jamie, Peg, and Patty for all of your PMs and suggestions of what to ask the doctors. The MMN might have been THE question. Thank God for this forum or we might not have seen this glimmer at all.
Sending you all my best and hope you all have stories of hope to share real soon!
Take care,
Pam B in Va