Twitching and Cramping: Peripheral Neuropathy

[Krackersones]

There doesn't seem to be much interest in this topic on the board but I thought I'd throw this recent article out there for comment. It is current (2008) and comes from the Mayo Clinic. The first line says this condition is uncovered in 10% of those with peripheral neuropathy complaints. Twitching and cramping are peripheral neuropathy complaints. I did not have this test ordered by the first two neuros I saw so it must not be a first-line test. The test is serum immunofixation and urine immunofixation. How many know if they've had this test? If you are interested in having it, maybe bringing in this article would help you make your case for it. I know it is scary because of its connection with the diseases mentioned but it is not a forgone conclusion that you will get one of these (75% never do). If you only have a small amount of the protein you may only have a 5% chance of ever developing these other diseases but can still have the neuropathy symptoms. _________________________________________________________________________Phys Med Rehabil Clin N Am. 2008 Feb;19(1):61-79, vi.Click here to read Links Neuromuscular disorders associated with paraproteinemia. Hoffman-Snyder C, Smith BE. Department of Neurology, Mayo Clinic, 13400 East Shea Boulevard, Scottsdale, AZ 85259, USA. Neuromuscular disorders associated with monoclonal gammopathies are usually uncovered in approximately 10% of patients presenting with peripheral neuropathy complaints. This discovery should prompt further evaluation for underlying plasma cell dyscrasias. The most frequent monoclonal disorders associated with neuropathy are smoldering myeloma, multiple myeloma, Waldenström macroglobulinemia, solitary plasmacytoma, systemic immunoglobulin light chain (AL) amyloidosis, POEMS (polyneuropathy, organomegaly, endocrinopathy, monoclonal gammopathy, and skin changes), and cryoglobulinemia. If these are excluded by careful evaluation the patient is classified as having monoclonal gammopathy of undetermined significance. Diagnostic criteria, risk stratification to determine prognosis, and current management for these disorders are reviewed in this article.

 

[AllGoodHere]

Hi Jro - It's not the lack of interest - more like that lack of relation for most people. I think that in general, most neuros don't want to do immune testing because they haven't found it to be productive, and they just plain won't order it if the patient is not having trouble with daily activities or if they don't have other salient symptoms. The one immune test I did was pretty much called a 'fishing expedition' because they didn't know what else to do. They, like the rest of us, hate feeling unproductive. Also, there is this acceptance that for most patients, even if there is an immune link, there isn't a treatment, unless the numbers are high and you have to go for infusions. Right? This is the talk I hear from the specialists - I'm inclined to accept it for myself based on my results and symptoms. BTW how are you feeling? Holding up OK with all this? You seem to have a much higher tolerance for tests and specialists than most of us. It always throws me for a loop, the 'special' doctor people, the office visits, tests and results. I get my hopes up and instead of answers I get referrals. It seems like a lot of bungling around in my case. LOL it is like a weakness - instead of being a chocoholic it is a referaholism - I usually end up letting one of them talk me into another round every once in a while. Better to go for a round at the local lounge!

 

[papillon58]

hey Krackersones-- of course i am intereted.. wish i had it when i went to gp... will definately ask next time i go to neuro- right now that is supposed to be in may though...i may go local before that if this tongue doesnt stop.

 

[Krackersones]

You make a lot of good points and I totally understand all of it. I hate going to doctors but I hate having these symptoms more. Different people have different tolerance levels I guess and mine may change as circumstances change. I think you are absolutely right about there being this idea that if you have monoclonal gammopathy (MGUS) or other autoimmune signs that there is no treatment that is not "extreme," so why consider it until your condition justifies it. However, I also think that a lot of doctors don't stay on the cutting edge of this stuff. They are not reading the new literature and are not in contact with doctors who actually get all the patients like me who want to try something so they don't have the knowledge or experience to really "know" what the treatment options/outlook really is. My doctor (Dr. Engle) wrote the first article identifying monoclonal gammopathy's connection with neuropathy in the early 1980s. So based on this, I'm guessing he gets a lot of referrals and consults with patients falling into this category and so has a better sense of the success rates with various treatments and longterm consequences of treating versus not treating. I have done a lot of research on MGUS neuropathy and there are several studies showing that IVIG and plasma exchange are effective. Granted these are expensive and somewhat invasive, but I don't think all that risky relatively speaking. At least one of the studies was double-blind/placebo so it does provide solid proof of efficacy. Some of the studies show patients sustaining their improvements even after treatment stopped so it was a big ordeal at first but had lasting positive impact. Others required ongoing treatment but if it was helping and you knew it why would you stop? This area is also receiving more attention right now. In fact, there is a clinical trial that began in March 2008 titled "Rituximab in Treating Patients With Peripheral Neuropathy Caused by Monoclonal Gammapathy of Undermined Significance." I'm trying to find out the results of this study but it is obviously new info that your average doctor is not going to be on top of. I've seen posts on other boards from people with this condition who say they took this drug and it helped tremendously. This is probably what led to the trial. For me, this is really about a wanting to get back to how I was and to do everything I can before irreversible damage occurs. I have read many posts from people who have gotten treatment for immune-mediated neuropathy who have said they wished they got the treatment sooner because it may have prevented some of their damage and would have led to a speedier more complete recovery. I am 37 years-old and feel like I must try to do everything that involves little risk to find out what is causing my problem. Once I have that nailed down to my satisfaction, then I can intelligently weigh the risks of doing nothing versus the treatment downsides. I don't think many doctors care as much as I do about bringing all knowledge to bear to potentially solve my issues. I want to give this my best shot and not just rely on the determination level of the doctors I happen to see. I could very easily end up nowhere with all this. I'm sure I have a burn out point. We all do. But right now, I haven't reached it. I get a little energy from finding others like me who have found answers and successful treatment and from seeing current research that my docs aren't aware of. This reminds me that I am my own best advocate. I also remember that I know now more than I did and had doctors who acted as is there was nothing left to investigate when there clearly was.I really hope my email does not make others feel they have to do all that I'm doing. I know it sounds exhausting and it is. I strongly believe that information is power and you can never have access to too much. So, I throw this info out there but others are free to disregard it and should if it does not apply to them or only causes them anxiety. Neurological symptoms are so subjective that I think each person knows far before a doctor does whether their issues deserve a "fishing expedition" or a "wait and see" approach. I am getting more tingling and burning nerve sensations everyday. The twitching is still there periodically but I think it is calmed somewhat by the Klonopin I take. This has made me more aware of the sensory impact which is what showed up as "severely abnormal" nerve conduction results in 6 of 7 nerves tests. The 7th nerve was moderately abnormal. At the time of this test, I honestly felt I had no sensory nerve issues and was also suprised because my two prior NCS showed no abnormalities. Now I KNOW I do have sensory nerve problems because of my new symptoms. This tells me that my problems are progressive, which is why I'm staying aggressive in my pursuit for now. I apologize for the rambling nature of my comments. I really hope to be posting a short message in the future that simply states my symptoms, my tests, and my ultimate solution. This is my goal. That post (much more than this one) may actually help someone.