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monmike

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Loved one DX
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Bluff City
I have been looking at these Boards for over a year and finally decided to post. It all started in October 2009 at Disney World, my husband woke up and couldn't move his left arm...we came home and the testing started, EMG, MRI, Spinal Tap..the local neurologist didn't know what was wrong and his right leg starting having problems. We went to Vanderbilt in December 2009 and received the probable diagnosis of ALS (told to go home enjoy the holiday and come back in January - dont' read about it on the internet). Returned to Vanderbilt in January - don't think it is ALS because he regained some strenght....they weren't sure what was wrong and sent us home. The doctor called in Febuary and said lets try IVIG - this went great, Mike regained strength and was moving around OK. The next trip to Vanderbilt....the doctors said CIDP, another round of IVIG 9 weeks latter - this IVIG didn't go as well and at this point Mike is in a lot of pain - doctors now think MMN. The next IVIG only lasted 5 weeks, so from June - October Mike had IVIG every 6 weeks this would improve his strengh some however he is always in a lot of pain. Prior to having the treatment Mike is unable to dress himself or walk without a cane. We decided in October to give the Mayo Clinic a call - due to his condition they had an appointment in November, however since he had just had a IVIG we wanted to wait until they could see him at his lowest. So he is scheduled at the Mayo in Rochester on December 13th and this will put him 7 weeks post IVIG.

Does anyone else have the severe pain associated with their MMN? Also, Mike is normally in bed for 2 days after the IVIG treatment.

The last year has been a roller coaster ride for our family.
 
My husband has CIDP-MADSAM which is a motor variety that is similar to MMN. Hubby has received IVIG since 2007. Generally speaking most people need IVIG at least once a month. My husband was on the monthly regime and had to go to a every three week regime as by the time week four came around, he had lost function in his hand and the foot drop was worse. He is in the process of trying to wean the dose down (due to cost factors and the government whingeing about the cost). As soon as they dropped his dosage from 100 G. every 3 weeks to 80 G. every 3 weeks, he began to lose function in the hand. I don't think it is a very good idea to stretch out the IVIG so they can see him at his worst as damage occurs and sometimes be irreparable if there is axon damage. It isn't unusual for people to be in bed for a couple of days after receiving IVIG due to side effects of IVIG. Hubby usually doesn't pretty well with managing the side effects by pre-medicating with Aleve prior to IVIG, during and after--as well as drinking lots of water before during and after. IVIG is a very thick substance and the water is critical to help prevent side effects. Also, the nurses will usually slow down the IV if a patient tells them about the side effects. My hubby wants to get in and out of the day care so he has them run it fast, and then will pay the price with feeling unwell for the next couple of days. I would suggest that he get his IVIG monthly minimally and that he keep a diary of everything. I'm not sure about pain with MMN, but many with CIDP have neuropathy pain. My husband does not so he is lucky. But on the CIDP/GBS forum pain is a huge issue for many to the point of it be debilitating and people going to pain clinics to find appropriate meds. I can't stress enough to keep a good journal of the course of his illness. Good luck and let us know what happens. Also some people do better on different IVIG products because of various substances in with the IVIG. Hubby does well on Privigen and Gammunex.
Laurel
 
Hi Monmike,

From my experience and everything I have read on the internet including what my nurse says and the nerurologist - pain is NOT a function of MMN. That is not to say that he does not have MMN. It just means your husband may have additional issues that are causing the pain. I have pain from arthritis and back issues but it is not because of the MMN. I get cramps that hurt terribly and that is from MMN and there is weakness, tiredness and sometimes atrophy (before IVIG starts or after a great deal of time ie years).

I have experienced pain when I "over do it, as everyone does, but sometimes it feels like my over do it behavior is very different than it used to be. So I do not play sports and I watch how I exercise. I cannot push myself like I did, but then again I am 62 now, so that stops me some too. I hope this makes sense because it is not easy to differentiate how some pain is caused but the primary source of the pain is not going to be from MMN as it it not that kind of disease. Please let us know what Mayo Clinic says and take good care.
Sincerely, Peg
 
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Thanks for the feedback…it is great to correspond with individuals who actually have heard of MMN. Mike was coaching baseball and basketball last year prior to October and now he has difficulty walking. Mike is 39 years old and had no health issues until October 2009. He is an electrician and has continued to work - he is going to take off FMLA starting next week until we return from Mayo due to the fact that the physical demands of his job are not good on his body.

Mike has had both the Privigen and Gammunex - but still has the debilitating headaches with the treatment even with the pre-medicines. Mike does gets lots of cramps and twitching –the majority of the pain is in his feet and legs. For the pain he has been given neurotin, northriptyline as well as pain medicine.
 
We experienced alot of the same last year. We thought (hoped) it was MMN and had IVIG treatments. The first was very successful, the second produced no results, the third sent my husband spiralling down. After that, it was clear that he has ALS, not MMN or CIDP. You will be in my thoughts and prayers these next few weeks. The wait can be excruciating. Keep us posted.
 
Dear Mommike,

I am sorry I did not respond about the side effects of IVIG. I had terrible headache and flu symptoms after my first treatment. It went on for a week until I called the Doc. I have had the same pre meds now since Jan of 2007. Salumedral (sp?) = IV of prednisone, 2 benydryll, 2 tylenol, and one compozine. The compozine is a for nausea and headache. It is all wonderful and I have never had a side effect from IVIG since. I am a little hyper from the prednezone and my face needs no blush.:lol: I have written this up several times but Doctors give different pre meds. These work perfect for me. Maybe your Dr. can try them with your husband.

I also have restless leg syndrom RLS (which can be part of MMN) I take 1/2 vicodine every night for that and 2 benydryll because the vicodine makes me itch a bit. That takes care of that and within an hour or so I go to sleep. The twitching drove me crazy and sometimes I have taken another 1/2 of vicodine if its real bad. The good thing about vicodine (for me) is that if I take the 1/2 at a time it takes care of pain or twitching and does not make me feel drugged or high. If I do take too much I do feel high so it is easy for me to pick the right dose.

For cramps I drink tonic water with quinine. I really like the tonic and I used to drink gin and tonic but liked the tonic straight better, so drinking it for cramps is easy for me.:smile: You can't get quinine pills in the US (they are banned and they are bad news anyway from what I have read.) But the 2 to 3 8 oz glasses a day of the tonic water works wonders for me. That is also what my nero suggests. I get the Kroger brand diet tonic for a 2 liter bottle for 80 cents. That's the cheapest I found that I like. I hardly ever cramp anymore. Also I always wear socks as cold makes my feet cramp too.

Now the pain. I thought all day today about the pain. Up until last summer when I finally started to be able to work out - lifting weights (not walking or running) and water aroebics, I did have a lot of pain. So THERE IS PAIN. Prior to last summer I usually took 1/2 vicodine for pain in my legs just to have a full day. I don't need it now but if I go to an airport or shopping where there is no shopping cart I use my cane or I cannot keep up with my family and my legs start to ache. I think I responded with how I feel now which so different after 3 years of IVIG and being retired (and officially disabled)

About ALS. I was first DX with ALS. Most people will say there is no pain with ALS. Mayo clinic with get to this for you. It took me over 4 years to get my correct DX of MMN. I am blessed in that I respond well to the IVIG, not every person with MMN does. I am so glad your husband is able to take off work for awhile. It will help. Please enjoy the holidays as much as you can and try not to worry about the DX. As you know, worry uses your energy but changes NOTHING. Please try the tonic water and if you can the vicodine see if they help. Please keep us posted. It is good to talk about it. You are in my prayers. Best Wishes, Peg
 
We are here at the Mayo Clinic in Rochester (cold and lots of snow) and it has been a busy week. Mike has had a lot of blood work (15 tubes), spinal tap and very intense EMG (4 hours). He had a chest X-Ray today and will have a MRI tomorrow. Mike is 8 weeks from treatment and is very weak - he can not lift his arm or leg at all.

The results look like CIDP due to the fact that they found some loss of sensory in his foot. The doctors want to be more agressive on the treatment - 5 days of IVIG (started today), once a week for 3 months and then determine how often once every other week or so for a year or two. Mike is having an IVIG treatment as I type this message. The doctors also suggested physical theraphy and the use of a leg brace to assist with walking.

The Mayo clinic is like no other - Mike had his spinal tap and by the time we got back to the hotel the results were posted on-line. We hope to get everything wrapped up tomorrow and get home to Tennessee. Go VOLS!
 
Monmike what good news! I hope your hubby rallies round and re-gains strength soon. And I hope they can keep the side effects at bay so he isn't so uncomfortable. Report back and let us know how he does. Take care.
Laurel
 
Excellent Monmike. So glad you have answers and treatment path. Please keep us posted. Peg
 
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