AnonymousOctober 10, 2007 at 3:52 pm
I took the liberty of reposting this thread for Andrew as it is is first post & might get buried under the rituxan thread. I know there a few members with this same type of neuropathy & was hoping they would see it & respond.
This is my first posting to this discussion board so I don’t really know exactly what I am doing. Nevertheless, I’ll give it a try because I would really love to find someone else with the same thing as I have recently been diagnosed with: IgM MGUS. I drew the short straw in the statistic of 1 out of 5 with MGUS having peripheral neuropathy, which was the reason I went to see the doctor in the first place. After about a year of blood tests and EGM tests, etc. they narrowed it down to IgM MGUS.
I can still walk (albeit a bit awkwardly), but I had to give up running. It is in both my feet and hands now.
The hospital has prescribed Rituxan and Roche has agreed to lower the cost a bit. However, Mr Roche will still be able to afford a fine new car after a couple of series of injections. They are quoting about $16,000 less 10% for a one month series of four injections.
First though, the hospital took a blood sample today for the Antimag test (anti-myelin-associated glycoprotein). The results should be available in 3-4 weeks.
I have spoken to the Mayo clinic about a trial they have specifically for this. Surprisingly there are only 6 members in the trial. (I thought these trials were with hundreds of people). There is another trial underway in France, but that is not quite so easy for me to get to (I live in Canada).
I’ve done a lot of research into all of this stuff, along the way thinking I had CIDP or Charcot-Marie Tooth, etc. Other worse self-inflicted diagnoses have guaranteed more than one night without sleep.
The Mayo clinic mentioned people with various stages of neuropathy damage, and I am wondering how bad this can get. At this stage, I have to hold on to the wall when I close my eyes in the shower so as not to fall over. And I am not too good on the roof anymore cleaning the gutters. I fell with a chainsaw in my hand a few weeks ago so my wife stays clear of me when I am cutting wood now. Also, no more water skiing and I almost killed myself trying to skate backwards last winter on the ice.
So….if anyone out there has IgM MGUS, it would be great to share stories and learn as we go.
Good luck to all.
AnonymousOctober 10, 2007 at 8:37 pm
Welcome aboard. What a scarey experience with the chainsaw…wow!!!
There is another member here that has the IgM problem…Norb, he is just
now getting his Rituxan…he was also recently diagnosed with lyphoma. He
has posted under “What is your Code”…he also has a website BlueMarble
that you might find interesting…he’s really nice.
He has CIDP and posts in this category.
He can help you…good luck.
AnonymousOctober 10, 2007 at 11:25 pm
Why are you afraid to post on your own? Or is it you just don’t know how? I went through that. If that’s hte case I’m sure Pam will help you or in that case any one of us. As Miami Girl mentioned, there are people here with a similar condition. If you learn to post on your own, I’m sure you’ll find out a lot more information.
Yeah, I wanna know. With the the adverizing going on and what not, I’m a little hesitant about being supportive.
AnonymousOctober 11, 2007 at 11:44 am
Hello Andrew. Welcome to the family. Several of us on the forum have AntiMag IgM including myself. As you probably know, this variant of CIDP ( sometimes called PDN – paraproteinaemic demyelinating neuropathy ) is a very slowly progressing form.
Mine started with slight numbness in my toes back in 2001. Now, I can no longer drive. I have to use a rollator to walk and balance because my feet are totally numb and there is some numbness up to my knees.
About a year ago, my fingers started going numb too. Today, I can only hold a cup if I use both hands. I drop things all the time. I cannot put caps back on medicine tubes, type, or do any fine motor work at all. For typing, I now use a dictation program called Dragon Naturally Speaking. In addition, my tongue is getting numb.
I’ve been trying to get Rituxan for about 2 years but insurance would not pay because, here in the U.S., it is only approved for Non-Hodgkin’s Lymphoma or Rheumatoid Arthritis.\
About 2 years ago my neurologist sent me to see an oncologist in Denver to rule out Waldenstroem’s, a slow growing form of lymphoma. This can sometimes be the underlying cause of AntiMAG IgM. Back then, the oncologist could not find enough evidence to confirm it, but suspected that evidence would develop.
Just a few weeks ago, I saw another oncologist here in Fort Collins where I live. After many blood tests, he did a bone marrow biopsy and found lymphoma…not significant enough yet to be Waldenstroem’s, but enough to show that cancer is my underlying culprit. After that, he ordered a PET scan to check for any metastasized cancer.
It came back negative.
He was then able to get approval for Rituxan which I will be starting on Monday. I am really hopeful that the treatment will bring an end to my now quickly worsening symptoms. I am aware that there are a number of reports of success with Rituxan but it doesn’t work all the time.
It may be too late for my feet. If the nerve axons are damaged they may or may not grow back. I am hoping that at least my tongue and hands will improve.
So, hope this gives you some information you were looking for. If you want to read more of my story in detail, there is a link below with my signature. Keep us posted about how you are doing.
October 11, 2007 at 11:57 am
I am so happy that you can finally get Rituxin. My best wishes to you and we will pray that it is the drug that is going to arrest your progression
AnonymousOctober 11, 2007 at 12:12 pm
I saw in your note just above that you are not driving. Have you considered hand controls? I have very serious disability in legs, feet, hands, etc. and even very significant double vision from 6th cranial nerve demyelination and it all used to be even worse, but I was able to get my car equipped with the correct adaptive devices to get back behind the wheel. This includes prism lenses to correct the double vision for safe driving. The physical therapist who evaluated my needs, did driver training, etc. said that literally almost anyone with physical disability can be equipped with devices for driving. The feeling of regaining the freedom of driving is fantastic. I was not driving for many months. I can provide more details on how I got the hand controls, tec. if you are interested. I was just evaluated by California DMV, re-tested with driving test, etc and passed with flying colors.
AnonymousOctober 12, 2007 at 2:03 pm
I saw in your note just above that you are not driving. Have you considered hand controls?
thanks Bill, for all the info. It sounds like a good idea but I would not trust my hands which are pretty numb. Also I have a wonderful wife who takes care of me and likes to drive. I am retired and she does not work either so things work out for us usually. A few times when she was in Denver babysitting our granddaughter and I was alone at the house, I called Dial-a-Ride, a service provided for by the city of Fort Collins. For two dollars and 50 they take me anywhere I want and pick me up again as long as it is in town.
October 13, 2007 at 8:44 am
Like you I’ve given up driving, along with the hand issue I’ve got issues with the meds. Basicly pain meds and driving don’t mix, just a DUI waiting to happen. I miss my independence but have a fear of hurting someone else. Much rather use the medical transpo that the city has to offer than end up with a DUI or in an accident.
AnonymousOctober 13, 2007 at 3:33 pm
Andrew did post on his own, by reading the original post and then what Pam said, you should understand how this post happened.
It is so important that the members of this forum use it as a constructive tool, and one that will help to build other members up in their illness with things like (constructive) support and experience.
AnonymousDecember 9, 2007 at 11:57 am
[QUOTE=Pam H]I took the liberty of reposting this thread for Andrew as it is is first post & might get buried under the rituxan thread. I know there a few members with this same type of neuropathy & was hoping they would see it & respond.
Thank you for posting my original message. I know that you mentioned it previously, but it took me until today to find it while going through all the threads. I guess a search would have been a lot faster but the knowledge gleaned and gain in appreciation for the problems of others from all the different threads was well worth the time. It is hard to feel sorry for oneself when you see what others have gone through.
I am not sure where I should be posting in future, but as I wrote in the CIDP-Rituxan thread, I had my first infusion on Friday and it went well. My feet felt number (as in “more numb”) than normal in the last few days, opposite to what the Rituxan should do, but it is far too early to expect improvement from the first infusion, and I believe that going back to excercising recently has resulted in this sensation. Hopefully it’ll go away.
Thanks, Miami Girl too for your message. I have read many of your posts this morning on all the various threads and also have corresponded with Norb (very knowledgable) and Allaug too. Also, I looked into the ICD codes, but I haven’t been able to find any mention of the coding my doctors gave me in their reports, so I’lll have to ask next time I see them.
I have tried to find out as much about the success rate of Rituxan in treatment of IgM MGUS and for the most part it sounds very promising. So I am optimistic and will continue to give feedback on performance.
I like to add a little story here and there too, because I do see some humour in our plights. Norb’s story of walking across the street before he noticed that he was missing a shoe struck home last night as I was in and out of the house to BarBQ some pork tenderloins (maybe a mistake given the story of pork factory workers with CIDP), and noticed on one trip that I had a running shoe on one foot only. That’s not good because we have snow here…but it was comical anyway. So all the stories of pressing the gas pedal and brake at the same time, and tripping with the chain saw are for fun. Like the time I had sandals on and someone stepped on my toe. I didn’t notice until two hours later that my toenail had cracked lengthwise and I still wear a bandaid 2months later otherwise it gets caught when putting my socks on. Maybe we need a thread of funny numb-foot stories. (joking)
Enjoy your day and smile
AnonymousDecember 10, 2007 at 12:16 am
It is nice to see another post from you & also to learn that you have gained a lot of insight by reading many of our posts. I have/had a very severe case of CIDP which came on rather suddenly. One weekend I was snowmobiling & a few weeks later I was totally unable to walk & had no trunk muscles, no arm strength, & almost no use of my hands. When 8 months of IVIG, PP, & steroids failed to arrest my CIDP I was finally put on 8 months of chemotherapy. I mention this as I just remebered that after my cytoxan infusions, my feet & lower legs would feel like “frozen turkeys.” It was really scary to me as I thought that the infusions were making me even worse.
That was back in March of 2002 that I came down with CIDP; by the summer of 2004 I had enough back to begin walking again. By that fall I was walking with AFOs & a cane. Not much better today, but a lot better than I first was!
AnonymousDecember 10, 2007 at 9:30 pm
I was so sorry to hear about what happened to you after snowmobiling. Did they give you a diagnosis first of Guillain-Barre and then it changed to CIDP? I always thought that CIDP was the chronic version of GB and GB itself is the acute version of much the same thing.
The thing that is hard to explain is the mental part of it all. I found that I have gone through a number of stages in the 12 months or so, first of not wanting anyone to know that I had a nerve problem, then telling only a few people. Of course there have been many many nights of lying there thinking it was something a whole lot worse. For that I am extremely thankful.
Still, it really forces some decisions. I feel right now that I am at a crossroads…do I retire/quit while I still have some mobility. Do we cut back on our retirement dreams in order to continue to pay for medication? There are no easy answers…but some decisions need to be taken. All of that is apart from the treatments. The main thing is to stay positive like so many people on this forum have taught me to be, just by reading their posts. I have my wife and three daughters who are very supportive, so I feel lucky. Also, I keep telling them that there is no doubt housework is bad for CIDP or MGUS. How come they don’t believe me?
I hope that you can get back on a snowmobile someday. I prefer XC skiing but the snowmobiling is fun too. Our cottage is in a heavy snowbelt area and there are incredible snowmobile trails there, so many of our friends have snowmobiles. Maybe I will have to take it up now that my skiing has gotten a bit wobbly.
AnonymousDecember 11, 2007 at 12:31 am
I had to laugh when I heard the expression “cottage”, as here in the part of Minnesota I live in, we call them cabins. Our summer cabin is in the Voyageurs National Park, a small island virtually in the middle of nowhere. I was snowmobiling up there when I first came down with symptoms, but it was from having walking pneumonia for 3 months that actually brought the CIDP on. I also used to love to downhill ski, cross-country ski, & skate during the winter months, but now all I have left is snowmobiling, for obvious reasons.
You do have some difficult decisions to make; because I became so ill at 48 these decisions were taken care of for me. I never got to retire from teaching, but my husband did retire at 55 so that we would have some quality time together, we have learned what is important in life. He just passed his one year mark of retirement & we realized how fast the year went & how we never even got a chance to take a real vacation. But now we are in the years of taking care of both of our mothers & also helping out our son who is in a wheelchair when he needs/asks for it. Luckily we traveled a fair amount when we were younger!
BTW Tell your daughter is is not possible to do housework with CIDP, that is why I hired a cleaning woman 6 months after I first became ill.
AnonymousDecember 11, 2007 at 8:03 pm
I understand the snowmobiling now. If I am correct, you just got a big storm today? Wow…it sounds really bad with the freezing rain and power outages. Reminds me of 10 years ago when Quebec had the same thing. Some people were without power for several weeks.
I like the word “cabin”. I’ve also heard “chalet” and “camp” too. Here in Ontario we call it cottage as in “cottage country” for some reason.
Here’s our view in summer…
I am not sure exactly what is “walking pneumonia”, but pneumonia is a bad thing period. My Dad passed away in March after getting pneumonia and then other complications once he got into the hospital. Still, he was 95 years old so that’s not so bad. My mother is a bit younger but reaching the age of needing help, especially with paperwork and bills, etc. Sounds like we are all in that same generation.
Sorry to hear that your son needs a wheelchair. He is lucky to have caring parents like you.
I have to say that today I feel really good and I am wondering whether it is the Rituxan or not. I went to the Y this morning and then came home and shoveled the driveway. I used to get this feeling sometimes when I was running and the next day I would end up with a cold or other infection. So I could generally tell when a cold was coming. I don’t understand the reason for that. Maybe I already had MGUS and with a cold coming on, the antibodies went after the cold germs instead of attacking the motor nerves which made my runs better. ???? Who knows. Anyway, I hope that it is the Rituxan working and not another cold coming on.
Have a nice evening and stay warm. It sure has been a lousy start to winter this year.
AnonymousDecember 12, 2007 at 6:38 am
Andrew I remember the ice storm. I was lucky I didn’t lose power for more then 13 hours at one time. I would lose it and get it back then lose it again. My parents went about 5 days without power. We live in a city. Lost money because we couldn’t go to work. Some co workers who live in the country went about 2 to 3 weeks without power. Wow what a mess and felt like the olden days without electricity and we had to use candles and batteries were hard to come by for our flashlights.
AnonymousDecember 12, 2007 at 5:57 pm
I had a friend in Montreal who lost power for a week. He had just started to watch a rented movie when the power went off. Finally, when it went back on, he was able to get the movie out of the video player and return it. They wanted to charge him a late fee for keeping it too long. 😀
We went skiing about a week or two after that and couldn’t believe the damage to the trees along the highway East of Montreal on the south shore.
I know Cornwall fairly well because I used to visit the two aluminum smelters in Massena quite often. But I always stayed on the Cornwall side. Food is way better.
I’m in the big chair tomorrow for my 2nd infusion of Christmas. I better go make my sandwiches now. Take care
AnonymousDecember 12, 2007 at 8:25 pm
Hi Andrew Good Luck with your infusion. You have to make your own lunch? Are you having it done at the hospital?
I know when I have my IVIG once it was during lunch time and they had a sandwich for me and cheese. Wasn’t what I would have chosen but it didn’t cost me a thing and I also had soup. They will get me juice anytime when I ask for it.
AnonymousDecember 12, 2007 at 8:56 pm
Thanks Sue. Actually it is not bad at all…at least the first one was OK. I go to a clinic in Mississauga run by Bayshore Clinics, as recommended by Roche when they set up my appointments. The clinic then calls McKesson Pharmacy who delivers the Rituxan there the day before and then I just show up to get hooked up. They put the little tube in my hand and away it goes. The nurse there is very qualified and checks blood pressure and temperature every half hour. They suggest bringing a lunch, and I love food so that is good good advice. It took about 4 hours for the first one. I understand that IVIG can take even longer.
At the clinic they have nice big reclining chairs so it is easy to just relax and go to sleep for a while. I take my computer with me but they don’t have wireless.
Have you ever seen the Thread called “tavern”? It seems to be the busiest thread in the entire Discussion board. Very interesting.
AnonymousDecember 19, 2007 at 4:59 pm
Andrew, I have not followed this thread for a while and just reread some of it. I noticed that not too many people have been following it compared to the one on Rituxan. So in the interest of newcomers I will continue to post on the other thread when it comes to Rituxan or anti-MAG neuropathies.
I was wondering about your pain sensations. You mentioned one instance when you did not notice someone stepped on your foot. It seems my pain nerves are not affected at all as I just experienced a little while ago again. I was just making some tea for a new batch of Kombucha (a now popular natural remedy, culture of yeast and bacteria). Trying to move a bag of sugar in the corner cabinet I held on to the hot stove top. The pain was intense although my hands are about 80% numb. Running into something with my feet can also be very painful. They are 100% numb.
I’d be curious to hear a little more about your experience with pain.
AnonymousDecember 19, 2007 at 10:24 pm
Welcome to our group. I’ve had IgM spike with MGUS for five years now. I have not been receiving any treatment for it. I just see the Oncologist every six months for blood work and follow up. In Nov 2007 was dx with CIDP. The MD has not stated if it is in relation to the IgM Mgus spike or not. Guess I’ll ask the next time I’m in.
Legs from above knees to feet are numb, with tingling, painful, feet and they are like blocks of wood. Arms from elbow to fingers the same. I gave up driving as i could not tell what my feet were doing.
I hope the Rituxan works for you
AnonymousDecember 20, 2007 at 7:27 am
Good to hear from you
[QUOTE=norb] I will continue to post on the other thread when it comes to Rituxan or anti-MAG neuropathies.[/QUOTE]
I was thinking exactly the same thing because there is so much knowledge and information on the Rituxan thread. Actually Pam kindly started this thread for me but I hope that it does not draw anyone away from the Rituxan thread because I think pooled knowledge is better and I don’t know about others but I find it confusing with so many threads on so many subjects. Still, I’ve found some interesting ones like The Tavern and The Weather one.
Regarding pain…although I have numbness, I still have sensation. When the doctor does the pin ***** test, I can certainly feel it and if anything, stubbing my foot or dropping something on it causes a real sharp pain, worse than it used to be. When the chap on the bus stepped on my toe, it was very painful, but then the pain completely went away and I did not notice till later that my toenail was broken. But toenails don’t have nerves so that would explain it I guess. I thought it was comical at the time because I had no idea that my toenail was broken and it was my wife who noticed because I had sandals on. And we were with company.
One thing I have noticed is that one must be careful in how one sits with peripheral neuropathy. On two separate occasions I have collapsed upon standing up. What happened was that I was sitting in such a way, legs crossed or something, that the circulation was cut off to one leg. Normally one feels pins and needles when the blood starts to flow again, but I did not feel anything and when I stood up, with my leg asleep it just gave out and down I went. It’s a real learning experience.
Am off for the third infusion of Christmas today. Have you noticed any positive effects from the Rituxan yet. (maybe I should ask this on the other thread).
AnonymousDecember 20, 2007 at 7:42 am
[QUOTE=blskat1]Welcome to our group. I’ve had IgM spike with MGUS for five years now. [/QUOTE]
It is really good to hear from you because I have wondered where this is all headed. It is sometimes difficult to get a clear understanding because in so many cases there are other related diseases and varying remedies.
Judging by your age, you first experienced the IgM MGUS related neuropathy at exactly the same age as me, 59. Mine has progressed up into the lower part of my legs below my knees so that I still have strength and feeling in the upper parts of my legs, but am losing it in the lower parts and especially in the feet and ankles. Also, it is through my fingers and the palms of my hands.
Hopefully the Rituxan stops it.
I have trouble feeling the pedals in the car too, and heavy traffic is scary because I worry about having to suddenly stop and accidentally stomping on the gas.
How long after first diagnosing it did you finally give up driving? I have to drive in my job and disability may include giving up my license (or vice versa). It is a tough decision.
You mention also that you are now diagnosed with CIDP. I am confused about the CIDP relationship because I was thinking that MGUS was a form of CIDP. Anyway, good luck with it. Maybe they will prescribe some medication like the Rituxan which has shown encouraging results.
AnonymousDecember 20, 2007 at 1:33 pm
Andrew, I tried to clear up the confusion between CIDP vs. MGUS on the Rituxan thread.
So, as far as pain is concerned the two of us aren’t very different. Just like you I hurt when I run into something with my foot but I don’t notice that I split a nail or am bleeding from one of my toes until much later or when my wife complains that I have been leaving a trail of blood all over the floor.
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