Hello everyone. By way of introduction, I am Linda. I was diagnosed with MADSAM on Monday. Since I cannot find a discussion group for this disease, I decided to come here and hang out with you. From what my Neuro said, CIPD is the closest disorder in tems of symptoms and treatment. We have not decided yet whether or not I will get the intravenous IG or a large doses of Prednisone. Still need clearance from the insurance. May I ask which treatment has been most effective for you?
Mine was an acute episode that landed me in the hospital. Mid to upper back pain that was burning and excrutiating, buzzing and pins and needles throughout my body, but concentrated more in my hands, fingers, thighs and toes. I also experienced great weekness; could walk with a walker, but only very short distances. Multiple tests were taken, including blood tests, MRI's, CT's, as well as regular X-rays. They could not find anything. As much as I was grateful that there were not tumors, lesions, etc, I became very frustrated. I also had a very tight feeling in my upper abdomen- like a band that stretched across my very distended abdomen.
After my 15 day hospital stay I made an appointment to see my Nuero. He did a nerve conduction test, and EMG?, the standard neuro evaluation and a lumbar puncture. The protein in the CSF was just slightly elevated. I continue to experience the pins and needles sensation, as well as nerve pain that comes and goes. I am still weak, but stronger than I was in the hospital. Unfortunately, I also have severe low back pain when I stand too long or walk for any distance..and I am always tired.
Thanks for listening. I'm happy to be here. Any and all suggestions re the symptoms and treatment are appreciated.
Hi Linda, so sorry you have had to go through this. Sounds like yours came on very suddenly, more like Guillian Barre than CIDP, but your dr diagnosed you with MADSAM. I thought that disease was more chronic in nature and came on slowly. I have Crohns disease as well and have been on prednisone a lot. I am only on my 3rd IVIg treatment but would choose this hands down. I have not had any side effects yet and prednisone has a lot of really, really bad ones. Only 3rd IVIg & feel better
Hello Doggymama, and thank you for your response. My mother had Guillian-Barre. She was 64- same age as I am. She was paralyzed almost completely and had to be on a respirator. Sadly, she passed away because of her weakened immune system. I also have Crohns disease and have been on and off the prednisone...but have never sustained the larger dose for more than a couple of weeks. We're leaning towards the IVIg treatment. My Neuro is supposed to call me when he gets the insurance approval, as well as the result of a blood test I had yesterday. Can't remember what he was looking for, but whatever it is will also play into whether or not I can have the IVIg.
I'm happy to hear you are feeling better with only 3 IVIg's. That is really what I want to hear about- positive and/or negative results.
I'm still not conviced this is MADSAMS, though I have a lot of confidence in my Neurologist.
Doggymama said:
Hi Linda, so sorry you have had to go through this. Sounds like yours came on very suddenly, more like Guillian Barre than CIDP, but your dr diagnosed you with MADSAM. I thought that disease was more chronic in nature and came on slowly. I have Crohns disease as well and have been on prednisone a lot. I am only on my 3rd IVIg treatment but would choose this hands down. I have not had any side effects yet and prednisone has a lot of really, really bad ones. Only 3rd IVIg & feel better
Hi linda, please keep me posted on your progress. So far, I have not one side effect from the IVIg and am starting to feel small results already. Good luck. Jo
lindalmcc said:
Hello Doggymama, and thank you for your response. My mother had Guillian-Barre. She was 64- same age as I am. She was paralyzed almost completely and had to be on a respirator. Sadly, she passed away because of her weakened immune system. I also have Crohns disease and have been on and off the prednisone…but have never sustained the larger dose for more than a couple of weeks. We’re leaning towards the IVIg treatment. My Neuro is supposed to call me when he gets the insurance approval, as well as the result of a blood test I had yesterday. Can’t remember what he was looking for, but whatever it is will also play into whether or not I can have the IVIg.
I’m happy to hear you are feeling better with only 3 IVIg’s. That is really what I want to hear about- positive and/or negative results.
I’m still not conviced this is MADSAMS, though I have a lot of confidence in my Neurologist.
Doggymama said:
Hi Linda, so sorry you have had to go through this. Sounds like yours came on very suddenly, more like Guillian Barre than CIDP, but your dr diagnosed you with MADSAM. I thought that disease was more chronic in nature and came on slowly. I have Crohns disease as well and have been on prednisone a lot. I am only on my 3rd IVIg treatment but would choose this hands down. I have not had any side effects yet and prednisone has a lot of really, really bad ones. Only 3rd IVIg & feel better
Hi Linda, I was diagnosed with CIDP about a year ago. My progression was slow and mild. I started with a numb foot that progressed to tingling in both feet and buzzing feeling through my body. Then my hands started to burn and drop things. I was diagnosed with CIDP because my lumbar puncture had increased protein and my EMG showed demyelination. So I first started with Pred and hated it!!! I was miserable, could not sleep, felt jittery, cranky, bloated...just hated it! Then we tried the IVIG. I currently get 40 grams every 21 days. The Ivig stopped most of my symptoms and reversed all the numbness and clumsy hands. Now a year after diagnosis I maintain a normal life with my infusions of IVIG. I sometimes have some fatigue and some weird sensations in my legs and hands but usually after I over did it during the day. I have not had ANY side effects of the IVIG and can even work and function the same day i get my infusion. Infusion is a bummer as it takes 4 - 5 hours of my life every 3 weeks but I guess if it keeps me feeling good and functioning and not getting any worse then it is a small price to pay.
Hello Jo and chirpybirdy. Thank you for the feedback and for sharing your stories. Jo, we have something in common, as I also have Crohns and have gone the Prednisone way a few times. I have decided to have the IVIG treatment. My neuro set it up for 5 days consecutively. Don't know what will happen in terms of more treatment. I'm a bit anxious, since I know there can be serious side effects with the IVIG..but I have read enough here in the forum to think that the treatment may work to lessen the symptoms of the MADSAM. New symptom: pain in various palces on my body, but it comes and goes, unlike the pins and needles and overall weakness. Also, the symptoms seem to be more extreme at night. ? Thank you again for your help. Linda
I was once diagnosed with MADSAM. Other doctors think I have CIDP. I think this forum is a good place for you to hang out. It appears that the treatment options for CIDP and MADSAM are similar. http://www.neuro.org.tw/magz/doc/13-1P24.pdf IVIG has worked very well for me. Hopefully, your insurance will come thru. I have never had a problem with with BCBS or United Healthcare.
Hi Evan. Thanks for your response and the link. Yes, my doctor told me they were similar..and that more is known about CIDP. The insurance came through, and I will be starting the IVIG infusions tomorrow at 7:30AM. I was told to plan to be there for 2.5 to 3 hours. I was also wondering if I should expect to be tired after the treatment.
Hi Linda, I’m new to this forum and have been reading your posts here and we have something in common; both have mothers with similar illness. My mother was diagnosed in 2005 with CIDP and treated with pred. Got back to 90% function then relapsed in 2009 and that time diagnoses changed to MADSAM, same treatment again pred. Original CIDP diagnosis at the age of 60. Last year July 2011 I was diagnosed with what we hoped was GBS but dx changed to CIDP in Nov 2011 at the age of 33. I have IVIG every three weeks for two days now. 75% back to function. I more forums I join the more families I come across with these types of autoimmune diseases. Nice to meet you despite the circumstances, Karen
Hi Linda. I missed your initial post as I joined after you. I guess I need to review all the forum post. (Note to sieved brained self) I'm glad you are here. We all have challenges, suffering, frustration, and I pray you all maintain hope. I work to keep myself amused about some of the things I deal with. For example, I have a horrible balance problem.
Today I was thinking of getting a T-Shirt that said:
Front: No, I'm not drunk, I just have a balance problem.
Back: I wish I was drunk, I'd have my balance back in a few hours.
Hi Karen. It's good to meet you. Thank you for reponding to my post. It's good to learn that you are back to 75% functioning. We do indeed share some common ground here. Unfortunately, there is very little info on MADSAM, except for those medical abstracts that are brief and not completely understood- at least by me..and to get the full article, one must pay a fee. I find my symptoms to be a lot like CIDP symptoms. I did have 5 days of IVIG infusions about three weeks ago, and I have to say I'm doing much better. My legs- though they still feel a little like jelly- are definitely stronger; no walker or falls, for which I am grateful. Also, the tingling is much better. I still have it in my fingers, but mostly in my thumbs, 1st & 2nd fingers. I am experiencing hot spots or burning nerve pain that comes and then goes just as fast as it comes, including pain under my fingernails. My voice seems to be affected. I always sound froggy, but it's not anything I can cough out or clear. I do continue to have serious dry moth to where (when I speak too long) it becomes like cotton and I slur my words. Would this be from the disease also?
Yes, it does seem like there is no shortage of forums/discussions re autoimmune diseases- for which I am thankful. Thanks again for your post. Linda
Karen said:
Hi Linda, I'm new to this forum and have been reading your posts here and we have something in common; both have mothers with similar illness. My mother was diagnosed in 2005 with CIDP and treated with pred. Got back to 90% function then relapsed in 2009 and that time diagnoses changed to MADSAM, same treatment again pred. Original CIDP diagnosis at the age of 60. Last year July 2011 I was diagnosed with what we hoped was GBS but dx changed to CIDP in Nov 2011 at the age of 33. I have IVIG every three weeks for two days now. 75% back to function. I more forums I join the more families I come across with these types of autoimmune diseases. Nice to meet you despite the circumstances, Karen
Hi Joe. It's good to meet you, and thank you for your response. It's good to be here; I hope to be able to participate more fully in this forum. It's somehow comforting to know others who struggle with the same issues, although I would not wish these insidious nerve diseases on anyone else. I do have hope that I will have more good days than bad ones. It seems that this messes with my emotions, as well. Feel a bit down, though I am very thankful it isn't worse than it is..and that I don't suffer greatly by any means. I did in the hospital before I was diagnosed..but, even then, I felt such a keen sense of gratitude for waking up alive and for all of my blessings. I have a supportive husband, John, who- if he's guilty of anything- looks over me like a mother hen. :) And, yes, a good sense of humor does much to diffuse the grey cloud that wants to engulf me at times. Your little ditty gave me a big chuckle! Hey, you could make those tshirts in mass and sell them to all who can relate and make a bit of spare change for yourself! By the way, I have a "balance problem," too..but, come to think of it, my equilibrium has always been a little off. Thanks again, Joe. Linda
Joe D said:
Hi Linda. I missed your initial post as I joined after you. I guess I need to review all the forum post. (Note to sieved brained self) I'm glad you are here. We all have challenges, suffering, frustration, and I pray you all maintain hope. I work to keep myself amused about some of the things I deal with. For example, I have a horrible balance problem.
Today I was thinking of getting a T-Shirt that said:
Front: No, I'm not drunk, I just have a balance problem.
Back: I wish I was drunk, I'd have my balance back in a few hours.
I"m hoping someone can tell me more about MADSAM. I have been concentrating so much on just CIDP that I haven't even considered anything else. I too have been through every test and all comes back normal except my EMG. First one I was diagnosed with CIDP, the second EMG came back better and I figured it was from some nerve regeneration. I saw something somewhere on MADSAM and started looking at it since my neurologist brought up sensory motor problems. He had noticed that I have one droopy eye lid, I have extreme problems with temperature and have to be at least in a room at 78 degree's and have really bad problems with restless leg syndrome which without being medicated will run all over my body.
At times my legs will stop working and then be fine. I have had extreme pain in my buttocks hips, thighs and sometimes down into my legs, but on my second EMG they found my paraneal nerve was also damaged. It seems there are many neurological diseases and I'm just fighting for treatment and try to study as much as I can. My neurologist is a vascular neurologist. I have been seeing him for many years due to a neck injury and the neck injury has given me high reflexes that are not usually seen in CIDP, but in reading they could possibly been seen in MADSAM but it is unusual so see the high reflexes. He is consulting with the doctors to try to get a diagnosis so I can get the IVIG treatment and looking back at the EMG to see why the restless leg syndrome has gotten so bad. I don't know that they are going to find the answers in the EMG. I have not had the spinal tap and have been avoiding it due to problems I had in the past with a spinal tap. And my neurologist agree's that many people just don't show the elevated protein so it may or may not even be useful.
My hands and feet do go numb and it feels prickly but my pain is in my lower extremities except the pain from my neck injury of course is in my neck that goes down into my middle back. At times I can only just lay on the sofa because the pain of sitting is to much and I just become house bound. Then it seems about once a year I get a little better and can walk with my crutches or a cane and do some things like light gardening. But I still can't sit and it's painful to stoop and bend.
If anyone can elaborate on this I would appreciate it. I feel at times i'm educating my doctor on some of this so maybe if I had a place to go to study MADSAM or someone could let me know more if I'm going in the wrong direction from CIDP it would be helpful.