The Newbie

[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!

[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!

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.

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

[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