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Posted: Mon Feb 23, 2009 9:46 am
by ViewsAskew
Recently I was reminded of a long time member who struggled with finding RLS treatment. She eventually found out she had small fiber neuropathy. Much like RLS, it can be idiopathic. It does, however, also present commonly with a few autoimmune disorders and other disorders/diseases. We also had another new member who has celiac and RLS and reminded us of that connection (this is about the fifth or sixth person to write to us about this).

What struck me tonight when reading about it the small fiber neuropathy is that it's:

easily misdiagnosed
has many symptoms similar to RLS
often associated with autoimmune disorders, including celiac
often familial, but family members may not know they have it
easy to diagnose at arthritis

As I read the list, I kept thinking of the person here and there that has at least a few of these symptoms and the doctors ascribe them to RLS.

While it often starts in the feet, like RLS is can be anywhere in the body, including the face.

Because we don't have a completely common experience with RLS, many of us assume that our symptoms our just "our" version of RLS. And, that may be true. But, I'd just about bet that in a few cases here and there, it's really something else.

Because RLS AND neuropathy are both common symptoms of undiagnosed celiac disease (along with iron issues), if you have more than one of these, definitely push for a celiac panel.

So, if you have ANY of these symptoms, please ask your doc for a more thorough exam if you haven't have one. And, if your RLS meds don't resolve these other feelings, you might want to push back, too.

tingling and numbness
pain - can be burning, jabbing, stabbing or tight-band pressure
electric shock-like brief painful sensations
have some of the above and have been diagnosed with arthritis

Gill, for example, has arthritis and lots of pain that sounds like this. A while back someone wrote of having pain that was like wearing socks too tight (the tight band pressure listed above).

Like all things, it's easy to read into something and think you have it when you do not. It's also easy to assume everything is related to one disorder when it's not. I doubt more than a few people here would have this, but I would also guess that at least a few people here and there do and are misdiagnosed or undiagnosed.

Posted: Tue Feb 24, 2009 7:22 am
by Kwazylegs

Your post couldn't be more timely for me. I just posted about my exacerbation of my RLS symptoms, and a progressing neuropathy in both feet...symptoms including numbness, shocklike sensations, and pain in my toes of both feet (right greater than left). These symptoms, while first noticed 5 or so years ago, and neuropathy confirmed by 3 EMG's, are progressing rapidly since my back surgery last March.

I've had RLS most of my adult life, but not nearly as significant as now, and the quantity of multiple medications which I now take to control the symptoms are of concern to me.

My neuro is doing a fourth EMG tomorrow morning, and I wish I knew more about the demyelinating? process which is apparently progressing. Maybe I could better understand the disease, and the prognosis.

I don't know if the previous workups I had included a celiac panel, but I seem to recall (if that's possible these days) that this was done in an attempt to identify a cause of the neuropathy. Thanks again for your presence and support to those of us in this (and many others) here have been a great source of comfort and information about the symptoms we share. ---Andy

Posted: Tue Feb 24, 2009 7:33 am
by ViewsAskew
Hi again - I just posted in response to your post about this post (did that make any sense, lol???).

I wish I knew more to help you, but I do not. I haven't a clue what you're going through regarding the tests or why it's spreading.

A member of the board about two years ago went through a lot of difficulty with this dual diagnosis. The doctors missed the neuropathy initially and couldn't figure out why the RLS didn't respond better to meds.

Per the celiac, it's only one possibility. The bit of reading I did last night about this seemed to indicate that it's idiopathic in many cases. Given that you have had RLS for many years, it's just as likely that your RLS is not related. I would be wondering if any other autoimmune was a possibility, though, much as I wonder about Nadia.

We'll be thinking about you. Let us know what you find out.

Posted: Tue Feb 24, 2009 7:45 am
by Kwazylegs

I'll post the results of the test later today, with the hope that maybe somebody else with similar symptoms might find help here.

Have a restful day. ---Andy

Posted: Wed Feb 25, 2009 4:18 am
by Kwazylegs
Hi again,

Well, I had the emg this morning, and I have to say that I have very little confidence in the neurologist that did the exam. I've seen him before, asking him about the accelerated changes in my RLS and pain since my surgery last March.

This doctor just doesn't instill any confidence in me...during my last visit late last year, since I was having adverse effects from the DA's, couldn't tolerate the zombie-like brain slowing of the daytime doses of gabapentin he prescribed, and my RLs was made worse by the Elavil he prescribed, he flat out asked me "what do you want me to do for you?".

At this point, I realized that he had little or no interest in helping me, and I vowed that I'd need to find another neuro to sort my problems out.

Since I've been essentially unemployed for two years, I applied for a disability with the SSA, and I listed this neuro as one of my treating docs. Prior to filling out the disability form, he wanted to do an EMG, (which last December he said wasn't necessary).

I could go on and on about the inconsistencies in his diagnoses of my problem...first he says it's a neuropathy, and now after a hastily-done emg, he says it's pure RLS. He once called my symptoms post-surgical nerve damage that is permanent, and now maintains that the surgery wasn't at all responsible for the numbness in my right foot. I don't know what he's going to write on the form he fills out, but at any rate, I'm going to keep plugging along, and start looking for another doctor to deal with this stuff.

I'm not trying to play one doctor against another, or drug-seeking...I've got medications to help me with symptoms. I just want someone to tell me with some degree of confidence what's causing the RLS and pain, why it flared up after the surgery, and guide me in treating the symptoms so I can maybe go to bed some nights with some sense of confidence that I won't go through another hellish experience like last night.

I have some questions about EMG's, and whether or not the numbness would appear in the nerve conduction velocity part of the exam. I wonder if Dr. B might be able to answer that question.

Sorry for another saga of epic proportions...I hope that you all have a restful night tonight. Thanks for your all being here.


Posted: Wed Feb 25, 2009 4:41 am
by ViewsAskew
Grrrrr.....I do not understand the lack of doctors in northern Illinois who "get" RLS. Your guy sounds identical to the guy who let me augment for over a year...while telling me he was an expert in RLS. He didn't even know what augmentation was.

Not that it helps you, but I am planning on sending many doctors a form for the Chicago RLS SUpport Group; it will ask them about their experience, what they use to treat RLS, etc. From it, maybe, just maybe, we'll find five or ten doctors who really can treat us. Until then, Susan and I have talked about meeting up in So Cal and seeing Dr B. You can join us. :?

Posted: Wed Feb 25, 2009 5:35 am
by Kwazylegs

I respect your experiences here in N. Illinois with trying to find a dr. who "gets it" as far as RLS is concerned.

At the age of 61, I find that my RLS is worsening, and although not now as severe as some here have it, I fear about not being able to find a doc who can help me as things progress.

I'd love to make So. Cal...I think the change of weather coupled with an opportunity to share a few moments with people who I regard as true friends, and meet with a Dr. who can calm some of the fears I have about the future with this disease would be wonderful.

Unfortunately, my wife and I have been drawing down from a savings account that might last another 11 months, unless I can either find employment or qualify for SSA benefits. So, I just can't handle it financially right now. But thanks for mentioning the meeting...I really feel confident that it'll work out well for Susan and you.

Well, I've got to get going now, so here's hoping a restful night for all.


Posted: Wed Feb 25, 2009 1:23 pm
by dogeyed
Just had to jump in here. On the Social Security Disability front, it takes them FOREVER to let you thru the gates to the cash. Keep on trying, but just keep that in mind. On the other hand, you are just a year from "early" retirement, so that money might work for you. For now, if you can find SOME kind of job to keep from spending anymore savings, do it. Perhaps something at home would work, or part-time. Look at a variety of possibilities. But if you're staying out of work to bolster your SSD chances, ignore what I'm saying.

Perhaps ask your family doc for (a) an increase in your hydrocodone mixture and (b) a sleep aide on a temporary basis. Consider a second opinion on the neurology deal. I feel very badly for you, that you've got all these awful symptoms and no one is helping you very well.

Posted: Wed Feb 25, 2009 3:47 pm
by Kwazylegs

Good to hear from you again! As far as SSA disability, I've been told about how long it might take before any $ might come through, and I don't expect to see a first-try approval.

Apparently, SSA considers any earnings above $940 in any one month as grounds for dismissal of a disability application, or if already receiving benefits, exceeding that amount would be considered a return to work, and therefore suspension of benefits.

When I took an early retirement 2 years ago (because of the sciatic pain from a lower back condition), I intended to get a part-time or full-time job close to home. But then the economy downturn set in, my back condition worsened, and post-surgery problems occurred which made my working pretty much difficult or impossible at times.

Heck, I applied at a new Walmart store in 2007, and they wouldn't hire me...I didn't need benefits, just a weekly wage, but I guess they thought I'd be unhappy with the job or something...I apparently couldn't convince retail stores that I wasn't looking for a career, but just something to help pay for groceries and stuff.

About a month ago I got a call from my old employer that they were hiring, and if I wanted the job I had when I retired, I could go back to work with them. This call came "out of the blue"...I wasn't looking for work at the time, because of the problems I've been having with the RLS and neuropathic pain...I'm waiting to hear from their human resources department for the official offer of employment, but I worry about my ability to do the job well if I can't get any decent sleep, or just trying to wake up early and function well mentally with sedating medications still in my system from the previous night.

I really need the money, and I'll probably try to go back to work there, even though I'll essentially be trashing my disability application by doing so.

I'm a firm believer that everything happens for a reason, and yet I still am riddled with fears about everyday kinds of trying to function physically and mentally each day and relationship with my wife and others...just trying to sit still and read a book. It's amazing how many aspects of our lives are affected by this disease.

I hope that everyone here has a good day, and that we might be victorious over the obstacles we face.