new member – CIDP/MADSAM/MMN
AnonymousFebruary 26, 2007 at 5:53 pm
I’m excited to finally find a group of people who understand what’s happening to me. Been looking all over for local support groups. Stanford believes I have a variant of CIDP which might either be MMN or MADSAM. ALS is not ruled out yet but will know for sure in the next 6 months as this develops. Started about a year ago with some leg weakness while doing sports. Now I’m mostly on crutches outside the home. I Started seeing doctors in July 06 and ended up at Stanford where they’re tracking this. I just started my 4th full dose IVIG treatment today (34 grams/day for 5 days). No response yet, so this will be my last, unless I somehow respond to this one. I don’t have a prognosis yet and it’s advancing pretty fast. My left leg and foot are toast, right leg and foot heading that way. The rest of my muscles are affected but nothing that is restricting me seriously yet except my leg.
I have a gazillion questions but docs don’t seem to have many answers for me. It all seems so individual. With no prognosis and no response to treatment I feel like I have no future I can count on or plan for. I don’t know what is around the next corner. At the present my symptoms and tests (EMG, blood, spinal tap etc.) are overlaping with several similar type diseases (ALS, MMN, MADSAM) so Stanford is waiting for my symptoms to clearly push me into the AI camp. The first big milestone will be removing ALS from the possibilities.
I am very interested in hearing about others and what their situation is so I can guess what my future might hold. Right now I can only use past history (last 9-12 months) to predict the future and that isn’t very promising. Are there many of you who also didn’t respond to IVIG? What finally workded? How fast can this progress?
Well, I’ll start with that and see what happens. Looking forward to scouring this forum for answers.
AnonymousFebruary 26, 2007 at 9:17 pm
Some prayer here for a definitive diagnosis. I V I G did work for me , however, I beleive there are others that it did nothing for. Hopefulloy they will see this and tell you what did work for them. No matter what it comes out to be, we are all in your corner pulling for you.
AnonymousFebruary 26, 2007 at 9:51 pm
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🙂 Hi, I watched my son loose use of one finger at a time to go to drop wrist then atrophy in his left arm. he lost the use of his fingers in 4 months, but all this in less than 1 year. He has been having IVIG every week since Jan “05” He is now 7 yrs old. They have now found that his last two toes are starting. I cant bare to watch him loose another part of his body. The only thing I see that IVIG is doing for him is his stamina, he’s stronger and not as tired and doesnt have as much pain. He says he still pains, but he tells me its not as bad, so he just deals with it. What an amazing little guy. He keeps me strong. He tells me that we’ll find a doctor that will help his hand. He doesn’t let me give up, so don’t you either. We have been to sooooooo many doctors and we won’t stop till we find someone to help that cares!!!!
My sons eye also seems to be involved, dr’s just want to piece meal him and I believe its all related. He did get diagnosed with CiDP at Mayo in Rochester, Minn. Hang in there. Your in our prayers!
AnonymousFebruary 27, 2007 at 12:13 pm
Hello I’ve been trying to get some feed back from this sight and nothing yet.. My daughter is 22 and dx 2-7-07 with cidp and have lots of quetions she had her first 2 infusions last week says shes very tired and doesn’t feel any different yet how long before she sees a change? This has been going on since 7-06? please someone reply
AnonymousFebruary 27, 2007 at 1:01 pm
I just got an email from you. Send me your phone number and I will call when is best for you. My daughter has CIDP and been on and off IVIG the last 7 years. Everyone here is always willing to help and are like a second family to allot of us. I know patience when you are thinking of your children health is tough.
Check your email and I will call you (while I fold laundry or try to avoid cleaning!)
July 29, 2022 at 10:35 pm
I wonder if you will see this but I am wondering how you made out?
This is the most similar set of progression and symptoms that are similar to mine.
The first time I noticed something weird was back in Dec 2021 when I noticed myself losing balance when I over reached for something. It was subtle but I did notice it. In Feb 2022 I went for a 5km run (normal for me) and after it felt like my R knee had no control and it would constantly try to buckle with every step. It progressed and I had to stop running because as soon as I started exerting myself, I would start to lose control of my motor functions in my R leg. My R foot would constantly drop and I would trip.
It is Late July and I have stopped working (as a carpenter) because my R leg constantly feels weak and I am unbalanced while I am on it. I am currently waiting for my results from a full Spinal and Head MRI and am undiagnosed but I am fairly convinced I have MMN.
My current symptoms are that my Leg is constantly weak, especially around the knee. Its pretty manageable until I start using it for any extended period of time. If I go for a walk then it quickly loses stability and control to the point where my R leg feels like jello. It does recover with rest. I notice it in my arm once I exert my self, but not nearly as bad as my R leg. My grip strength is good at first but quickly fatigues. I find drinking an electrolyte drink seems to help quite a bit. I have stopped drinking alcohol since I find it makes it worse. There is never any pain, or any sensory sensations like tingling or numbness.
If you get this then I would love to hear from you.
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