AnonymousApril 16, 2008 at 9:52 am
Hi there. I’m a new, but not so new, member of this forum. I actually registered over a year ago, but my journey of truth (as I call it) took a bit of time and I really didn’t want to participate until I had a better idea of what, exactly, was going on with me.
My name is Doug (a young 55!!), I live in Seattle, and I’ve been dealing with pain and neuropathy for the better part of the past 15 years. I’ve been alone in my fight through this condition. Alone, that is, except for my wonderful wife and friends who have always been incredibly supportive. I spent the better part of the first 10 years dealing with a medical community that had no idea what was wrong with me. It all started with some debilitating back pain. Surgery. More back pain and burning, hurting feet, and numbness. It just got worse from there. At various stages it was thought that I had MS, some hidden and bizarre form of diabetes (was this really more believable than what I actually had?!?), toxins in my system. heavy metals (I thought that was something I used to listen to in high school!!)…. pretty much you name it. Everything but what I had. Oh, I also dealt with the puzzled stares, the looks of disbelief, even doctors who thought I was faking it.
That last is comical considering who I am/was before this all hit me. High level athlete, playing soccer, basketball, and football in high school, college, and then amateur leagues. High-risk athlete who never met a class 5 river I didn’t want to run immediately. A class II climber. Avid hiker and backpacker. I’ve lived my entire life for challenges. Finally, professional pop/rock musician who has had pretty much everything taken away. Can’t even play the guitar anymore, because my fingers just don’t work well. Not looking for pity here–there are plenty of others who suffer far more than I do and, frankly, despite all this, I’m still an optimistic and pretty happy guy (although I certainly have my moments!).
Anyway, I just wanted to drop in and give a proper introduction. I plan to be around more in the future, hoping to hear news of any technologies/ breakthroughs that may empower me to live my life as fully as possible. Plus I hope to take a more active part in offering support and inspiration to those who may be floundering in their fight to maintain a quality-filled life. Not sure I’m the best role-model for that, but I’m still very capable of learning and growing.
However, I [I]do[/I] have a question? What forum would be best for me in terms of my condition. I have small nerve neuropathy due to MGus. Is there a good fit for me here or should I just float along, disrupting at random all of the fine subgroups we have here (yes, that was a joke!!). Looking forward to getting to know some of you better. Cheers.
April 16, 2008 at 11:12 am
Hi Swan Suite,
Nice to meet you, sorry it is on these terms! WOW, you sound like a guy who has really lived his life, I am jealous, rock climber, to rock star. It takes a special kind of person to complete everything they wanted to try in their life, you sound like a strong individual who has sure given it a great try!!!
You did not mention if you are currently receiving treatment, or have in the past. I have an 11 y/o boy with cidp.
Regarding your inquiry of where to post, I personally never post in the cidp/child category, I always just go to the main forum. It seems to get the most attention. There are so many smart, experienced people on this site that can offer info if you ask. I have learned much from them. There is a symposium in November, on the 7,8,9th in Chicago if you are interested. Sign up with the foundation to receive info.
Dawn Kevies mom
AnonymousApril 16, 2008 at 11:27 am
[I]Nice to meet you, sorry it is on these terms! WOW, you sound like a guy who has really lived his life, I am jealous, rock climber, to rock star.[/I]
Not so much a rock star, I’m afraid. I have played around town over the past 25 years, but it’s really just been for fun. I should have stated that I was a program manager for a nonprofit for many years….. not nearly so exciting, but definitely more steady!
[I]You did not mention if you are currently receiving treatment, or have in the past. I have an 11 y/o boy with cidp. [/I]
I have been receiving “treatment” for the past 12-14 years. Unfortunately, we didn’t really know what we were treating, so there’s been some false starts and stops along the way. Taking anything is difficult at the moment, due to the fact that this condition also tends to make one more sensitive to potential side effects. Until about 10 years ago, I’d never experienced a side effect. Suddenly, I seem to react to nearly everything–even the stuff that isn’t really supposed to be an issue. So I’m somewhat non-compliant. They’d like me to be taking 90 mg. of Oxycontin a day. I don’t. I take the stuff when I’m about to be launched into orbit around the sun from the pain. Otherwise, I don’t really like to take the stuff. It causes problems with my GERD. Makes me itch all over (and the antihistamines just make me unconscious). And I generally awaken the next day feeling…. suicidal. So they are a silver bullet for me. I’d take lyrica, but can’t. Side effects again. Works like a charm, but makes me feel much worse in other ways. I take neurontin instead, which doesn’t work nearly as well, but doesn’t effect me nearly as much. I take prevacid for my GERD and atenolol for a “runners” heart that I’ve had for most of my adult life. That’s it. I get periodic injections for my back stuff. Occasionally take an anti-inflammatory.
Thanks so much for the warm reply!
April 16, 2008 at 11:42 am
Hi again Swan Suite,
It sounds like you are just on pain meds. Have you been confirmed with a dx of cidp? If so, the usual protocol is to start ivig over a 5 day course and continue maint. doses to allow the demylienation to stop and healing to start. Check out a post on if ivig does not seem like it is working or something like that, I think deem or deenop started it and I just replied. Just some thoughts I had on the topic of ivig.
Ther are others on the site with your acronyms igmus or what ever they are, I always have a problem differentiating them!!! Try entering the acronyms under the search engine at the top and it will list all threads about it.
Dawn Kevies mom
AnonymousApril 16, 2008 at 12:24 pm
[I]It sounds like you are just on pain meds. Have you been confirmed with a dx of cidp?[/I]
No, I haven’t. I’ve been diagnosed with Small Fiber Neuropathy due to monoclonal gammopathy of undetermined significance (MGus). I’m not sure it really fits into any category, since it tends to be idiopathic and diffuse. Honestly, I’m not taking much of anything, but the condition is starting to let me know that that is no longer an option.
If so, the usual protocol is to start ivig over a 5 day course and continue maint. doses to allow the demylienation to stop and healing to start.
Unfortunately, there is no approved protocol for MGus. There have been some very discreet studies on the use of IvIg, but it is felt that the cure is worse than the condition and that the side effects from such protocol are too dire in relation to the condition. Of course, I’d like them all to have my condition and then tell me it’s not bad enough! 😉 The only time you get IvIg or the possibility of stem-cell implants is when you go to the logical next step in MGus’ itiology, which is bone cancer. So basically, if I was dying of cancer, I could get a treatment to get rid of the underlying condition. Doesn’t matter that I’m dying to get cured!!
The bottom line for me is that I’ve been told that there is no chance that I will ever get rid of this condition, because no protocol is approved. I think I filed that under the “live with it” tab.
[I]There are others on the site with your acronyms igmus or what ever they are, I always have a problem differentiating them!!! Try entering the acronyms under the search engine at the top and it will list all threads about it.[/I]
Thanks so much for the suggestion. I’ve already done a search and found a few posts. Those with MGus don’t seem to comprise a high number of the members of this site. But there are definitely some. The last post I could find was dated 2006, so that gives you an idea of the amount of forum traffic regarding my condition. Wish there was more, but maybe I’ll play a part in that in the future. Hope so. In the meantime, this is as close to a “good fit” as I could find on the internet. Hope I’m welcome…. I’m certainly feeling welcome! I suspect that there is much cross-over in my condition and CIDP and I’m hopeful that I’ll pick some valuable information during my time here. If not, I hope I make a few friends anyway!
April 16, 2008 at 1:07 pm
Private message Norb, I think his acronyms match yours. He is a WEALTH of info. I beleive he takes rituxin.
AnonymousApril 16, 2008 at 6:50 pm
Welcome and yes there are a few here with similiar symptoms and disease. I to was very athletic, have trophies in the trophy case for swimming, etc. and am lucky to get the mail today:) I ride a recumbant trike today for exercise. BUT you’ll find all levels of ability here and an ear to listen to you. The neuropathies are a pain literally, but there are some amazing people here to ask questions of. Take care…
AnonymousApril 17, 2008 at 4:39 am
Well howdy Swan!
You sound like someone I want to meet – or already met… my husband plays guitar and sings in a band, mostly rock from the Neil Young era, and like you mostly around town, at parties etc. I haven’t been able to see him perform live for several years because I can’t stay awake long enough for a band’s schedule but from the rehearsals I think they still sound pretty good for a bunch of old guys. 😉 I can totally understand your frustration with not being able to play anymore… I used to be able to paint and draw (not WELL, mind you) but I can’t hold my hand steady enough for that now. I’m curious though if you’ve ever done any composition? Maybe this is your opportunity to develop a different musical skill. I’m suddenly reminded of that movie School of Rock too… did you ever see that movie? Hilarious. 🙂
I’m sorry to hear you’ve been struggling with this for so long without really knowing what was going on. I was frustrated after two years without a diagnosis, I can’t imagine going as long as you have – I can see where your positive attitude comes in handy here. I think you belong here, with us, there are many of us here who are atypical from the normal GBS or CIDP – we just don’t have our own acronym yet. 😀 As Dawn says – Norb also has MGUS and I know I’ve seen it in other signatures as well. I believe Norb even has his own webpage – what a dude.
Class 5s huh… wow. I’ve done a few class 5s by accident but rarely by intention! Welcome to the forum Swan! Hopefully it won’t be as wild a ride as the rapids.;)
AnonymousApril 17, 2008 at 7:22 pm
Thanks Andrew. I’ve just bookmarked the thread you mentioned. Did just a bit of quick reading and realized that I need to be far more clear-headed to take it all in! Lots of information there, but also plenty of questions springing up based on the information being disseminated there. So I need to sit down first thing in the morning (when I’m at my most sharp) and read through. One thing is clear, these folks are in far worse shape than I am. Of course, I’m a bit younger as well, so my symptomolgy just hasn’t had a chance to advance to that level yet.
Many thanks to all of you who have responded. I’m looking forward to getting into the mix slowly but surely. Sitting at the ‘puter is always a challenge for any length of time, so I might be a bit spotty. A big hug to you all.
AnonymousApril 17, 2008 at 9:35 pm
I also have IGG MGUS (a bout with GBS in 2006) and continuing problems with pain and numbness in my feet, weakness and stiffness in my legs etc. Am thinking these lingering problems may all be due to the MGUS, but do not have a definite diagnosis yet. Glad to hear you share your experience. What tests were used to make your diagnosis?
AnonymousApril 18, 2008 at 8:31 am
Mine was a long journey of missteps, mostly due to the fact that I have a lot of disc problems related to a waaaay too active and high-risk of a lifestyle. Aside from the normal lower back stuff that all of my family seems to have been afflicted with (we’re all athletes!), I’ve also just beat myself up over the years, concluding with a pretty terrible face plant while skiing in the early 90s. The long and short of it is that I have a tremendous amount of back pain aside from the symptoms associated with Mgus. That’s made a clear diagnosis tough. It’s also been tough, because as you all know, many health providers just don’t know the condition, don’t look for it, and tend to get side-tracked by more obvious lines of inquiry. Still, I knew that something wasn’t right. I couldn’t articulate what that might be, but I just knew that this wasn’t just about my back. Ended up making me feel like a village idiot at times, but I’m mostly a very self-confident guy who is secure walking in unknown territory. You could say I’ve thrived most of my life in that environment. Still, it was good that I had a few doctors who respected and supported me.
The first diagnosis of Mgus was about 3 years ago. A fairly high reading on the Electro-pheresis (or whatever the heck that expensive blood test is called!) of an m-spike. Had an immediate biopsy, but that came up negative (thank goodness!). Still, it was believed that my symptoms were being caused by arachnoiditis. While I may have some mild arachnoiditis in my back, my symptoms were always too diffuse to be simply about spinal intrusion. I knew that…. but they didn’t.
Basically after that test I began a journey of trying to find out what was going on. In frustration, I finally went to my neurologist (a wonderfully intelligent, professional, and compassionate physician), read her the riot act about feeling like I’ve just been dropped in the middle of the desert without a map to get home. She felt very bad, promised that we would see this through, and sent me to the UW where two physicians are conducting ongoing studies on nerve-related conditions. One of them saw me for all of two minutes and said, “we could do a biopsy on a nerve if you’d like, but I already know what you have–I’ve seen hundreds of these cases and I can tell you that you have a small fiber neuropathy that is caused by your Mgus. You may have other underling unrelated conditions, but this is the one that is making your life miserable.” One of the more interesting things that came of my conversation with him, btw, was the fact that they are nearing the end of their study and preparing to publish. They both believe that Mgus is far more widespread than the medical community is aware and that there are quite a few people walking around with the condition with very mild symptoms who simply don’t know they have Mgus. That was interesting.
Anyway, that was pretty much it. He basically said there is no known cure and no real treatment for the condition. Plasmapheresis is contra-indicated because of a wide-range of issues related to monitoring the condition, understanding when there are high levels of the protein in my blood, and very strong questions around its efficacy, etc. Rituxan isn’t indicated because it is incredibly expensive, tightly controlled by the pharmaceutical company, and not approved for my condition. I can’t afford to pay $50,000 per dose (even if the drug company would go for it), my insurance company definitely wouldn’t cover it, and the docs won’t even try because they don’t believe it will work AND the company wouldn’t give it to me. If I developed cancer as a result of the Mgus, THEN I’d be eligible to give it a try. In short, he basically said that any approach to ridding my body of the condition has a steep downside. I don’t know if I believe that or not, but right now I’m just not in a good position to challenge anything.
Frankly, I’ve pretty much given up and accepted my fate. It’s taken 12 years of fighting desperately with my health providers to get answers. Now that I’ve got them, I’m just wrung out. I don’t have one bit of fight left in me. The best I figure I can do is to try to handle this decline with class and poise and try not to be a burden to those who love me. Everywhere I’ve gone I’ve run into walls. I’ve spent my entire life running through walls, but I’m tired, deflated, and, honestly, I just don’t care anymore. Yup, I’m depressed, but I can’t even take anti-depressants because I can’t tolerate them. Just another gift from my Mgus.
That’s basically it. Hopefully with a little time I’ll get some fighting spirit back, but right now I just want to catch my breath and try to get re-centered. The process of discovery in many ways has been far worse than the disease. Not sure what that says about our medical community.
Anyway, sorry to be so darned negative. I’m not usually like this at all, but I’m in a down period at the moment. I’ll buck up, find my center and become that wildly irreverent guy I’ve always been! Hugs to all. Doug
AnonymousApril 18, 2008 at 9:12 pm
Don’t apologize for feeling blue. We have all been down in the dumps due to this “condition” that is not well understood by our peers. I really think winter has been long this year and when we were in Texas a week ago, I felt much better just getting sun and warm weather on my skin! Thanks for your story — reaffirms my feeling that what I am now experiencing is MGUS-related. I was not aware that there are no real treatment options for MGUS-related small fiber neuropathy. I am going to copy your post and bring it with me next time I see my neuro. He has been puzzled by my symptoms, has sent me for the testing for MS (negative) and told me to come back again if I do not see improvement. Again, welcome to this “family.”
[FONT=”Trebuchet MS”][COLOR=”SeaGreen”][SIZE=”6″]Sending [COLOR=”Orange”]SUNNY[/COLOR] wishes from Iowa![/SIZE][/COLOR][/FONT]
AnonymousApril 19, 2008 at 8:00 am
[QUOTE=Iowagal] Again, welcome to this “family.”[/QUOTE]
Thanks so much for the warm welcome. Hardly expected that post to do anything but make people groan, so if it is any help to you in you journey, well, that’s a very pleasant and unexpected windfall!! Hope you find your answers. Hugs, Doug
AnonymousApril 19, 2008 at 11:46 am
I, also, have the Anti-Mag IgM with CIDP Presentation.
I have had a fairly quick decline from Nov 2007 to present. At first they thought I just had CIDP, but the IgM spike is elevated and the spinal tap was elevated.
IVIG did not work for me. Finished Phresis on April 4 and have had two good weeks. Not that I’m back to the old Beth of Sept 2007, but have been able to do more lately.
Am getting used to having to use a walker. Have a power chair to go to stores. Without my husband I would have to be in a nursing home.
Guess, the main thng I’ve learned and it is thanks to the people on this forum, is accept where I’m at for each day. Quit expecting to fully return to where I used to be and continue on with a positive attitude.
I, also got depressed and was put on low dose of Prozac. The med has helped, but i still have down days. Esp. when the pins, needles, pain, etc increase in intensity.
Welome to the forum and you have found a great group of very knowledgable people here.
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