Neuromuscular In memory of Rose Marie.


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Old 09-29-2014, 04:20 PM #1
patricia.aguilar patricia.aguilar is offline
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Default multifocal motor neuropathy with conduction block

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.
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Old 09-30-2014, 10:15 AM #2
twitchyfirefly twitchyfirefly is offline
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Default

Hi Patricia

I have heard of one or two other people with reactions like that, though it doesn't usually linger so long. Trying a different brand is the generally-accepted course, though I do know of one other person who just plain can't take IVIg. Subcutaneous IG (also known as subQ or SCIG) does help to prevent side effects. Have you discussed that option with your doctors?

Steroids are often given when allergic reactions happen. You should be aware that in about 20% of cases, prednisone, and probably all steroids, will worsen MMN symptoms. This is why it's so important to distinguish MMN from CIDP. Steroids do not worsen CIDP, which is very similar to MMN.

You don't say if the infusion helped his MMN symptoms or not. If he is one of the lucky 70% who does see immediate benefit, it gives you more incentive to work past the obstacles. Even if he is among the 30% who, like me, do not see immediate benefit from infusions, it still appears to slow and smooth out the progression. So give it at least a year of treatments if you can. In my case, it took eight months of treatment before I stopped dropping fingers.

I wish you the best of luck. Your husband is lucky to have such a devoted partner.
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Old 10-05-2014, 10:02 PM #3
Maria williams Maria williams is offline
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Default Mmn---10-2014

Hello Patricia, Aguilar,
I have MMN, I got mennengitus from IVIG, two times. The first time, after receiving one of two doses. Four months later, a different brand, to be taken over five days, 20% per day and on the 3rd day I got mennengitus again. I now take Hizentra, subconsciously since February, 2011. Started, 3 grams, (15ml). The first week, 7 days, once a day. The next week 2x a day, 2x a week. Over time the doctor increased it and at pressent I'm taken Hizentra, 4 grams, (20 ml) 4x a week, 2x a day. I live in Michigan and Dr. James Teener is with the Universaty of Michigan in Ann Arbor, MI.
I was 65 years old when I noticed my drop foot and it took 9 month of testing and changing doctors. I am now 70 years old and doing well on the Hizentra. Please look into this drug. Hizentra is infused into the fat of the body, it is a slow process, but it works for me, so far. I do the infusionst at home.
My thoughts are with you both.
Maria

Last edited by Maria williams; 10-05-2014 at 10:06 PM. Reason: To add one sentence
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Old 10-06-2014, 01:02 PM #4
twitchyfirefly twitchyfirefly is offline
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Default IVIg side effects

Most people would get IVIg on a regular basis do just fine. Many, myself included, get occasional headaches; hydrating ahead of time and keeping the infusion rate slow helps prevent this. It's not unusual for the initial loading dose (which is an extra large dose) to cause "flu-like symptoms", which include severe headache, chills, and vomiting. This has happened to me twice in 4.5 years.

Maria's experience sounds somewhat like this, only more severe. The kind of meningitis associated with IVIg is *edit*
It's becoming more common for people who do experience regular side effects, despite changes in brand, to switch from intravenous to subcutaneous administration of their immunoglobulin.
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Old 11-12-2014, 09:27 AM #5
aneczka aneczka is offline
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Default Allergic reaction - from which brand?

Quote:
Originally Posted by patricia.aguilar View Post
IVIG with this particular brand gave him an allergic reaction.
Patricia, Which brand was it? I will most probably be given IVIg's myself very soon and although I realise everyone reacts differently, I would still like to know which brands may be dangerous.

Wish you very well and I'm also jealous of the support your partner is getting from you. I dont think I would ever get so much support from any of my partners I've ever had. Males are rarely this faithful.

Wishing you both all the best.
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Multifocal motor neuropathy with conduction block since late 2005, diagnosed 12 November 2014
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