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crstr

New member
Joined
Jul 9, 2010
Messages
2
Diagnosis
01/2006
Country
US
State
MI
City
Grand Rapids
Hi Friends,

This is my first post in this forum. There seems to be a fairly regular upkeep here which is really a positive thing.
I was diagnosed in 2005 with MMN with conduction block at Mayo Clinic in Rochester and have been on IVIG treatments ever since. Right now I go every other week and get .4g/k.
I recently had to have a third surgery on my left knee. The first two were in 2007...one was a replacement, the second a revision because of looseness, and the third was just in sept. and was a revision in which a different surgeon replaced the entire replacement. My joints are very loose and the new knee does not rely on my body to keep it tight. No MMN problems after the first two surgeries, but my symptoms have increased markedly after this latest one. I now have left foot drop, the left thigh muscle is much weaker, and my hands, the right one especially, is much weaker.
My Mayo doctor said that this is very rare. I will be going to Mayo in January for a round of testing and then my ivig will most probably be increased....according to the doctor.
I went to my neurologist here in Michigan and his physical exam showed the weakness greatly increased. He would raise my ivig now to 3 weeks on and 1 off:sad: I am not happy about spending so much time "hooked up". Every other week seems like it comes up soooo fast now. I sure don't relish every Monday (with 1 monday off).
My symptoms had been fairly steady until about 6 months ago when the weakness/tiredness seemed to start increasing more noticably. Then I had the knee surgery and my body really objected. I think my new knee is the strongest part of me now.
I just turned 65 and have also now found that, whereas my ivig was totally covered before, I now have to pay $70 each time. This could get tough if they won't increase the dose, only the amount of times I go.
I seem to be rattling on. This whole picture may change when I get to Mayo.
Thank you for listening to me.:smile:
Take care of you,
Christine
 
Hi Christine. Welcome but sorry you're having your med schedule upped. Only advice I can offer is grin and bear it.

AL.
 
Good luck, Christine! Hope you have better news after your next visit to Mayo.
 
Hi Christine. Over on the CIDP forum, it seems fairly common for people to experience an exacerbation of symptoms following surgery or illness. I can't see why that would be any different with MMN. My husband has a motor form of CIDP very similar to MMN and I know that he had a major flare up after getting septic on a drug prescribed by his neuro. Took several months for him to level out and start responding to the IVIG as well as he had done before. I have read that some doctors will prescribe a loading dose of IVIG for their patients if they have deteriorated after a surgery or an illness. i.e. 2 Grams per kilo of body weight. My husband tried to ween down to .4 Grams per kilo every 3 weeks and he deteriorated really quickly. He gets 1 Gram per kilo of his weight every 3 weeks. Maybe they can increase your dosage and leave it at every other week as a trial? Best of luck.
Laurel
 
Thank you all for your thoughts! It means so much to be able to connect with others who "get it".

I am finding myself getting totally consumed by this disease which hasn't really happened in the 6 years that I have known what's wrong with me. I'm sure it's because of the immediate downturn. Suddenly I can't snap my grandson's outfits, my balance is off and my foot slaps when I walk. The new knee has a ways to go before that heals. I am constantly tired, etc.,etc. It is just getting to me and I don't like that.
I am a dog lover and have a new rescue lab. She is absolutely wonderful....my emotional life saver in all this! I need to be able to walk her again and continue her training. My body and my mood get in the way of this.
OK....enough of this pity party.

>laurel...your information definitely made me feel better this morning. I will call my Mayo dr on Monday and get his input on increasing my ivig even before I see him in January. My neuro here wants to increase it now and so do I. I will ask about going up in the gms/km as I have read of others getting more than the baseline of .4gm/km. I don't know if there are serious side effects of going up but I am ready to get back to self advocating as I have always done up until just lately.

Thank you all again..
christine
 
Hi Christine,

Thank you for responding quickly to my private message.

I wanted to say here though that I had no problem with surgery in 2008 (I was diagnosed ALS Oct 31, 2006, IVIG Jan 2007, and subsequently change in DX to MMN.) I had rotator cuff sugery in 2008 and it did not change my MMN at all. It took about 6 weeks to get back up to par. Began symptoms in 2002 and had back surgery in 2003 and knee surgery after that and there were no changes in MMN symptoms after those operations. I have read that other people do have MMN symptoms exacerbated following surgery, but that is not always the case. Just more info. Take Good Care, Peg
 
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