[patricia.aguilar]

Hello all. I’m new to this site and after reading through all the threads on MMN I thought it was time to start another. A little background on me I’m 30 years old and my husband of 7 years just turned 36 in September. When I met him all those years ago I remember holding his hand for the first time and noticing something just wasn’t normal. He was the strongest man I ever met but yet he couldn’t hold my had all that tightly. After a few weeks I asked what was wrong and he had no idea. “Just started going limp a few years back” he told me in the most nonchalant care free manner.

Young, stupid and very in love we basically ignored it for the first 6 years. He was so strong and able bodied how could he possibly be sick? I see the guy pick up bags of concrete as if they were feather pillows. Healthy as an Ox was invented to describe him! He eats grilled chicken and salad because he likes it, not at all for health benefits. Not a smoker or drinker and almost always gets his 8 hours of sleep in. Again how could he be sick he lives so much healthier than I do.

A little over a year ago everything changed. He became weaker and weaker in both hands and feet. He would lose his balance and feel as if he was going fall when standing up or walking for longs periods of time. His strength was just gone. His hands have become almost paralyzed. His fingers are in a permanent bent position. He’s doesn’t have the strength to even untwist a jar that has already been open. Intimacy has basically had to stop and he isn’t able to take care of the most personal issues like cleaning himself after using the restroom.
It’s the most heart breaking situation I’ve ever gone through in my few years on this Earth. To see the man I love withering away before my face and to not be able to do anything to stop it is the most heart wrenching feeling I’ve ever experienced. It has affected every aspect of our lives. He hasn’t worked for over a year now and the medical bills pile up so quickly. I work 7 days a week to provide all we need but this puts so much guilt and sadness on him. He was such a strong provider it just kills him to be closed up in the house all day alone.

We were given a diagnosis of multifocal motor neuropathy with conduction block in November 2013. He had one infusion in February and had the most severe allergic reaction any of the Doctors had ever seen. He looked like a lobster, as if his entire body was covered in a sun burn. All his skin was red, extraordinarily dry and he had thousands of raised bumps all over his body. He itched all over and was in such a sever amount of pain nothing helped. We battled this reaction for 3 months! Dr after Dr after specialist after specialist. First they gave him these very steroids but these only helped while he was taking them. The second he stopped all the bumps returned.

The doctor simply wanted to continue with another brand. We were horrified by the severe reactions. We wanted to avoid the multiple emergency room visits if this reaction happened again in the future. Seeing the hospital wasn’t too concerned with my husband’s health we switched hospitals and began from scratch. All these very painful test were done over and after 6 months of tests the brilliant doctors were able to prove…… IVIG caused an allergic reaction in him. I’m not sure how to even put my frustration in to words. We fought with every doctor we saw for over a year to simply prove what was so painfully obvious form the very beginning, IVIG with this particular brand gave him an allergic reaction.

Here we are a year after diagnosis with only one IVIG treatment under our belt and with my husband in more and more pain daily. We have an apt 10/9 with the Neurologist to determine how much and how slow he will be infused for. The company doing the home infusion is very fast and could be at our home that same week to give him his second full dose of IVIG ever. I’m very excited but so scared at the same time. I don’t know if he will be in the 70% of people that IVIG helps. I don’t know if he will have just as a sever reaction this time as last. Lets face it bottom line is we just don’t know what the future holds period, I don’t want to lose the love of my life this young. I mentioned only the very extreme details. The smaller day to day struggles are what hurt so bad, I adore this man and will be by his side through it all no matter the outcome. I would just give anything for him to have his life back.

[Kitt]

Welcome patricia.aguilar.

[AussieDebbie]

Hi Patricia

Probably the most important therapy a chronic pain sufferer can get is genuine love and support no matter what. Speaking for myself, there is often a sense that I am holding my hubby back, a burdon, etc. I often think he would live a much happier life with someone healthy. The guilt weighs heavily, adding to the depression the pain brings.

What you offer your husband is priceless. Your devotion and support would mean so very much to him. He is exceptionally lucky to have you. When times seem hopeless and you feel like you can't help him, remember your love is helping him more than anything.

You are truly an angel. I hope you are remembering to take good care of yourself and spoil yourself when you can. This forum is an excellent source of helpful information. But it also serves fabulously as a support network. A place not only for those suffering pain, but for those who live with pain sufferers. You need support too! Welcome!

Debbie

[zkrp01]

Hi Patricia I could only hope that my wife could be as strong and loving as you are. I wish strength for you and your husband both. Perhaps the Neurologist visit will lead to a factor that previously was missed. Good Luck, Ken in Texas.

[hopeful]

Hi Patricia, I agree with everyone else. Please don't think you are not doing anything to help your husband. You are doing the most important thing people with chronic pain need, giving love and support. I don't know what I would do without my husband to lean on.

On another note, I'm concerned about you working 7 days/week and helping to care for your husband. Have you given any thought to having your husband apply for disability? If not do it now because it takes two years after you get disability for them to give you health insurance. If he can get disability it may help you with money. You may be able to get at least one day off.

Also, if he is willing see if your husband will browse through this site. It may give him some comfort to know he is not alone. Keep coming here. You will learn a lot from people who care and understand.

[baba222]

Originally Posted by patricia.aguilar

Hello all. I’m new to this site and after reading through all the threads on MMN I thought it was time to start another. A little background on me I’m 30 years old and my husband of 7 years just turned 36 in September. When I met him all those years ago I remember holding his hand for the first time and noticing something just wasn’t normal. He was the strongest man I ever met but yet he couldn’t hold my had all that tightly. After a few weeks I asked what was wrong and he had no idea. “Just started going limp a few years back” he told me in the most nonchalant care free manner.

Young, stupid and very in love we basically ignored it for the first 6 years. He was so strong and able bodied how could he possibly be sick? I see the guy pick up bags of concrete as if they were feather pillows. Healthy as an Ox was invented to describe him! He eats grilled chicken and salad because he likes it, not at all for health benefits. Not a smoker or drinker and almost always gets his 8 hours of sleep in. Again how could he be sick he lives so much healthier than I do.

A little over a year ago everything changed. He became weaker and weaker in both hands and feet. He would lose his balance and feel as if he was going fall when standing up or walking for longs periods of time. His strength was just gone. His hands have become almost paralyzed. His fingers are in a permanent bent position. He’s doesn’t have the strength to even untwist a jar that has already been open. Intimacy has basically had to stop and he isn’t able to take care of the most personal issues like cleaning himself after using the restroom.
It’s the most heart breaking situation I’ve ever gone through in my few years on this Earth. To see the man I love withering away before my face and to not be able to do anything to stop it is the most heart wrenching feeling I’ve ever experienced. It has affected every aspect of our lives. He hasn’t worked for over a year now and the medical bills pile up so quickly. I work 7 days a week to provide all we need but this puts so much guilt and sadness on him. He was such a strong provider it just kills him to be closed up in the house all day alone.

We were given a diagnosis of multifocal motor neuropathy with conduction block in November 2013. He had one infusion in February and had the most severe allergic reaction any of the Doctors had ever seen. He looked like a lobster, as if his entire body was covered in a sun burn. All his skin was red, extraordinarily dry and he had thousands of raised bumps all over his body. He itched all over and was in such a sever amount of pain nothing helped. We battled this reaction for 3 months! Dr after Dr after specialist after specialist. First they gave him these very steroids but these only helped while he was taking them. The second he stopped all the bumps returned.

The doctor simply wanted to continue with another brand. We were horrified by the severe reactions. We wanted to avoid the multiple emergency room visits if this reaction happened again in the future. Seeing the hospital wasn’t too concerned with my husband’s health we switched hospitals and began from scratch. All these very painful test were done over and after 6 months of tests the brilliant doctors were able to prove…… IVIG caused an allergic reaction in him. I’m not sure how to even put my frustration in to words. We fought with every doctor we saw for over a year to simply prove what was so painfully obvious form the very beginning, IVIG with this particular brand gave him an allergic reaction.

Here we are a year after diagnosis with only one IVIG treatment under our belt and with my husband in more and more pain daily. We have an apt 10/9 with the Neurologist to determine how much and how slow he will be infused for. The company doing the home infusion is very fast and could be at our home that same week to give him his second full dose of IVIG ever. I’m very excited but so scared at the same time. I don’t know if he will be in the 70% of people that IVIG helps. I don’t know if he will have just as a sever reaction this time as last. Lets face it bottom line is we just don’t know what the future holds period, I don’t want to lose the love of my life this young. I mentioned only the very extreme details. The smaller day to day struggles are what hurt so bad, I adore this man and will be by his side through it all no matter the outcome. I would just give anything for him to have his life back.

Thinking of you and your family.