AnonymousApril 13, 2007 at 1:37 pm
Hi All~ I am new to this site and have been reading some of the postings and I am so glad I found you. My brother has been having problems since summer of 2006 …thought it was his back and so did the docs. He does have a herniated disk at L4 and 5 with a buldge on nerve. But he kept getting weaker and weaker..developed drop foot and now has weakness in both legs and has started in arms. The neuro now thinks he has MMN and wants to start IVIG. Does anyone know anything about MMN? Thanks
AnonymousApril 13, 2007 at 5:24 pm
Welcome to the forums. I don’t know much about MMN, but I am sure some others will be along to answer your questions. I do know that MMN, GBS, CIDP are all related though. MMN treatments are the same for GBS/CIDP and that is IVIG. IVIG is not a cure as there isn’t any cure, But it should halt anymore damage being done to the nerves.
Take care 🙂
AnonymousApril 13, 2007 at 5:43 pm
I have just found out that the Dr. has scheduled IVIG to start on Tuesday of next week. He also wants to do more extensive blood work. Is there anything we should know abot IVIG before he goes? We are quite worried and are still not sure of this diagnosis…they were saying for the last several weeks they thought it was CIDP.
AnonymousApril 13, 2007 at 6:23 pm
be it cidp or multifocal motor neuropathy [mmn] the Rx is the same, namely ivig. he should be premeded w 2 tylenol & 2 benedryl. max drip rate is 150 ml/hr, with 100 ml/hr a better start. be thankful he’s getting the ivig. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousApril 13, 2007 at 6:39 pm
Thank you for the information, I have read that the treatment can have some reactions with rashes and headache..I ask him if the dr. told him to drink plenty of water before hand and he said no, but I thought I had seen that it is a good idea.
Be good to yourself,
AnonymousApril 14, 2007 at 8:20 am
Hi, Pam, and welcome.
The UK group has the following write-up about MMN in our article on the chronic disorders:
Multifocal motor neuropathy (MMN) mimics motor neurone disease (MND/ALS). Research has shown it to be a chronic demyelinating neuropathy and some regard it as a rare variant of CIDP. However, there are differences that are more prominent than the similarities. MMN patients commonly have asymmetric weakness of the distal (far) muscles, while in CIDP, proximal (near) symmetric weakness is more common. The remitting and relapsing course that may occur in CIDP is uncommon in MMN. Patients with MMN rarely have significant sensory symptoms, unlike CIDP. Increased protein level in the cerebrospinal fluid of MMN patients is rare.
Treatment by IVIg or cyclophosphamide is shown to be effective.
We also have a good article on CIDP at [url]http://www.gbs.org.uk/info/cidp.pdf[/url]
Best wishes in the battle,
AnonymousApril 14, 2007 at 7:28 pm
Hi Pam – Welcome! I call IVIG my “go juice” !! I also premedicate with Tylenol and keep Benadryl handy if I need it. Keep track of the brand he is receiving – I’ve had three different brands and the first two (Gammaguard and Gammanex) caused side effects (fluish symptoms like chills/flushing, monster headaches), but recently have been getting Polygam with very few aftereffects. I do itch after all of them, but have learned to live with it. At my last session I didn’t drink enough water and they had to stick me 5 times one day to get an IV in! That night I drank water until I almost popped! Next day those veins were open and ready! IVIG is THE way to go! Let us know how he does. We’re here for both of you. Good luck and good health!
April 14, 2007 at 8:24 pm
Hi, besides tylenol and benadryl, my son also premedicates with zofran, he always throws up. We start with a flo rate of 25, then 5o, and then they went to 115. He could not handle 115, so they stay at 50 so that the side effects are not as awful. We also will be drinking this time, as I learned that from this forum. (this will only be our third infusion) Good luck, and you will find all the help you need here from all of the kind experienced people on this site. Dawn:o
AnonymousApril 17, 2007 at 9:25 am
Hi Ladies~ Thanks for all the wonderful information…I’m going to start a folder with all the info that he goes thru..test, treatment. diagnosis (theyre still aren’t sure what he has) Treatment starts today 04/17 at 12:00. I have to admit I’m quite scared for him and I know he is too. All prayers are greatly appreciated. and I will keep you and your families all here on the forum in my prayers.
I’s wonderful to have someone to talk too.
Be good to yourself,
AnonymousApril 17, 2007 at 11:48 am
This is the first time I’ve posted to this forum. I’ve been reading it for the better part of a year though. My husband had GBS/Miller Fisher in April of 2006. He received plasmaphoresis and then IVIG. He had no reaction to the IVIG… and in fact noticed quick benefits. Your brother will be ok. It just takes some time. We are praying for you and are praying (and have prayed) for many others on this forum.
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