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pmbenb83

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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
 

Jamiet

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We are all pullling for your hubby....i am so excited to hear this!


take care,

jamie
 

Icanmanz

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Hi Pam. Great story of hope. Will keep you guys in my prayers. I have a question though. What is IVI infusion? Can you explain that to me, please? I'm a little naive sometimes, but I can be nosey! LOOL

Irma
 

freddiesnetty

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Hi,
I hope the progress continues. I pray for a miracle everyday for all of us...I will keep your family in my prayers. God Bless! I too am wondering if this is like kelation? Not sure if spelled right...
Annette
 

pmbenb83

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Wow, You guys are quick! Thanks for the prayers and good wishes! We appreciate all of them!

Irma ~ You're not being nosey... if you don't ask questions, you won't know the answers. :) I found this website from GOOGLE that explained it as Intravenous immunoglobulin (IVIG) which is a blood product administered intravenously. ... IVIG is given as a plasma protein replacement therapy.

We would ask questions, and the nurse said that they really don't know how or why it works, but only that it works on some patients so they keep doing it. Kind of scary to me, but my husband wanted to try anything to try to extend his life.... well within reason. From what I understand MMN is where the immune system starts attacking your own motor neurons and this treatment is going to suppress his immune system. They also told him not to have the flu shot, which I believe would boost your immune system. This is all new to us, so if I am wrong hopefully someone will post and let us both know. ;)

So far something positive is happening for which we are very thankful, and even if this keeps him in his current condition, we will be forever thankful. Some people have been doing this treatment for 10-15 years and have slowly progressed into other diseases, which is why he wanted to give it a try. They truly inspired him.

Irma, I wanted to tell you that your posts have been a huge inspiration to me too. My husband is still capable of caring for himself, but I was drawing strength from you through your posts to become prepared to do whatever I need to care for him if ever I am needed. I just hope I can do as good and caring job as you did for your son. I know he is very proud of you! Please take care of yourself and know that I am thinking of you and your family during this holiday season.

Take care.
Pam B in Va
 

pmbenb83

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Annette ~ Thank you also for the well wishes and prayers! As to your question about kelation, I think Kelation is a therapy for heavy metal poisoning. I just looked it up online, because you peeked my curiosity. :) So far, the doctors said my husband tested negative to heavy metals. His problem may be related to his immune system getting off track and attacking him instead of an illness. The IVIg is actually a trial to see if it works. The doctors are still perplexed by him..... he's another medical mystery.

Good luck to you too!
Take care.
Pam B in Va
 

hopingforthebest

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Wow! That is great news!

:-D

Hi Pam

You have alot to be happy about! They way it was explained to us, is that IVIG that works point to MMN! As my husband's neuro said, MMN is a treatable disease.

Hope your husband keeps up the good work!

God bless you both!

Patty
 

Gina

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Hi Pam, if thier ever was a glimmer of hope i think you have found it!I so hope that it works out for your hubby but i know the emotional roller coaster that you are talking about.My husband also has als....or should i say probable als. which is all that the doctors would commit too.His respiratory system is the main problem and they could not figure out why that was shutting down so quickly while the rest of his body seemed to be affected less severly.Do you know if this treatment or does anybody know if this treatment is available in Canada?We have stopped going to the als clinic because it was an hour drive and my husband could not handle another visit just to be treated like a gineau pig!I have never heard of this treatment but i am sure that he would be willing to try it.!Maybe we didnt ask the right questions like you did!I am very excited for you and hope the improvement continues ......I am hoping their is a light at the end of the tunnel....thanks for sharing this news.....Gina
 

Icanmanz

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Thank you very much, Pam. It is so nice to hear my posts are helpful. Sometimes I worry that I am sounding too morbid, and I am trying my best not to. I only hope that my posts that I am putting out are about my son, and not about me. You see, my pain is immensek(using right word?LOL), when I am posting I have to let it out. To me it is not a good thing to keep pain bottled up inside of you, let it out, share it with other folks that are going through the same ordeal. Somewhere along the line someone will come along and help you how to deal with it. I have shred posts with folks on this forum that are godsent angels. In other words, I get a good night's sleep after I leave this forum. Am I making any sense? LOL God bless you folks! Good luck with your husband, and I hope everything works well with God's help!

Irma
 

kathmc

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hope/mmn

This is wonderful news. I hope your husbands progress continues to wellness.

I put MMN in the search section here & it said no matches. what is MMN?

kathy
lexington
 

KateO

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Pam -

I too had IVIG with the assumption that I had MMN. My first infusion was last April. The results were amazing - I walked for two entire weeks without my canes, I wasn't as tired, I just felt great. THen, I started feeling worse again. My next two IVIGs (spaced 2 months apart) yielded no results.

When I asked the ALS Clinic at JHopkins about it (they were not the ones who ordered the IVIGs), the explained that it was not that uncommon to see results after first IVIG even if it is ALS - and, that typically there are no results with future IVIGS.

I don't want to rain on your parade - I just know that I was so discouraged after the 2nd and 3rd IVIGs didn't work. I was diagnosed with ALS by Hopkins just a month after my 3rd IVIG. You didn't mention (or, I missed it) what ALS CLinic you are working with. You may want to ask them about my experience.

Take care.
 

pmbenb83

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Hi Patty ~ Thanks for letting us know what your doctor said about IVIg. We are still hopeful, but staying very guarded until we hear the magic words from the doctors. I hope you and your husband are doing well. :) Take care. Pam

Gina ~ I'm not sure if Canada has IVIg treatments there. You need to ask doctors in your area. It made my husband very sick with SEVERE flu symptoms, which took 3 days to get over. The treatment is like a blood transfusion of immunoglobin from blood donors. This is supposed to suppress his immune system IF it is MMN, multifocal motor neuropathy. Good luck with your husband too! Pam

Kathy ~ From the NIH website the definition of MMN is multifocal motor neuropathy which is a progressive muscle disorder characterized by muscle weakness in the hands, with differences from one side of the body to the other in the specific muscles involved. It affects men much more than women. Symptoms also include muscle wasting, cramping, and involuntary contractions or twitching of the leg muscles. The disorder is sometimes mistaken for amyotrophic laterial sclerosis (ALS, or Lou Gehrig's disease) but unlike ALS, it is treatable. An early and accurate diagnosis allows patients to recover quickly. Good luck. Pam
 

pmbenb83

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KateO ~ I'm so sorry to hear that the treatment was not successful for you. But please do not to worry about raining on our parade, because as I said to Patty, we are being very guarded with our feelings. We too are concerned that this could be a fleeting moment. We will see the doctor again in December and she will be able to tell us if it worked or not. For now, we are thankful for our glimmer of hope and will keep praying that it continues. :)

I noticed that you live in Montana, is this correct? Is there another Johns Hopkins other than the one in Maryland? We are in Northern Virginia and thought of going to Johns Hopkins for a second opinion. Right now he is being seen at UVA and everyone there have been wonderful. We are prepared to get a second opinion just in case he is given the ALS diagnosis, but not because we aren't happy with their staff.

Thank you for your words of caution. I do appreciate you sharing your experience. I think this forum is a great place for us to exchange notes, because doctors can only do so much and the rest is left up to us to deal with.

Take care and have a nice weekend.
Pam B in Va
 

Al

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Hi Gina. They do the IVGG infusion up here. They tried it on me with no success just after diagnosis on tthe off chance that I had MMN. I also tried 6 months of chemo with Cytoxan. No luck there either. Apparently I have ALS rather than an auto immune disorder. I thought at the time it was worth the try. Glad to hear it is working for someone here.
AL.
 

KateO

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Pam,

Good, I'm glad I didn't rain on your parade. Looking back, I just wish my doctor had told me that with ALS it isn't that uncommon for IVIG to work the first time.

I do live in Montana and no there is not a Johns Hopkins here. Wish there were. Would save me a LOT of money. We do not have an ALS Clinic here in Montana. I really do love going to the Hopkins ALS Clinic. As I always tell friends, "I expected them to be brilliant. I did not expect them to be so kind". I appreciate that the Clinic's focus is helping me LIVE with ALS. If you're considering going to Hopkins, I'd strongly recommend it.

Take care. As a woman with ALS, I thank you for taking care of your husband. It's not easy.

Warm regards.
 
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