Another New Member with questions…
AnonymousSeptember 25, 2009 at 3:19 pm
I’ve been reading many of the posts for the past couple of weeks…seems like there are a LOT of new members. That’s good, but also too bad.
While I could write a thesis on my medical history, suffice it to say, for now, that I’m still in the diagnosis stage. While I’ve had nerve pain off and on for about four years in my arms, it’s gotten a lot worse in the past six months. I recently had an EMG of my arms done, and it showed evidence of “demyelination, prolonged f-waves, and reduced velocities” in both forearms and wrists. CIDP is the top candidate at the moment.
My first question for everyone is this: Have you ever had, or thought you had, a flare or relapse as the result of an EMG?
The reason I ask is that about two days after my EMG I developed the most debilitating fatigue I’ve ever had. The only other time it had been that bad was when I had pneumonia a few years back. Now, for the past 3-4 weeks, I’ve had horrible fatigue, and the symptoms have spread to my lower legs. A lot of numbness, which is aggravated by hot showers or baths, some pain in my ankle area (outside ankle, by the fib), really weird “feelings” (a lot of the time it feels like my trousers are soaking wet…or that I have water running down my legs). My arm symptoms have gotten worse, as well.
Anyway, I was thinking about it, and it got much worse right after my EMG. As I’ve read here, over-activity seems to aggravate symptoms, and I was thinking that this might be due to overworking the nerves by overworking the muscles. If that’s the case, at least in my mind, it makes sense that a test that specifically aggravates the nerves for three hours could trigger a flare. I guess it could just be coincidence, but thought I’d ask.
I’m currently waiting for a schedule appointment with a neuromuscular specialist in my area…seems he’s one of two, so the waiting list is quite long. Luckily they had a cancellation, and I’ll be able to get in within a month.
Thanks for your help!
AnonymousSeptember 25, 2009 at 4:09 pm
[FONT=”Georgia”][SIZE=”2″][COLOR=”Sienna”]I’m not at all sure about EMGs bringing on a relapse. I’ve not paid close enough attention, probably.
But overwhelming fatigue is common. There are days when I can go along the entire day. And there are days when the fatigue is so great that I’m impelled to lie down and take what is definitely not a “short nap”.
Symptoms are so varied. I suppose it’s no wonder we’ve been pooh-poohed as hypochondriacs or shoved into improper medical categories. Thankfully, that is changing.
Much good luck to you. But consider your symptoms as [U]your [/U]symptoms.[/COLOR][/SIZE][/FONT]
AnonymousSeptember 26, 2009 at 12:02 am
Hi & welcome.
I am concerned that your symptoms have progressed so drastically.
I think you should try to get in to see the dr much sooner than sometime within the month. Call & explain that you are progressing at a much faster pace than before & you REALLY need an emergency appointment. Hopefully they will fit you in.
If you feel the numbness start to move towards your chest, in my opinion, I think you should go to the ER.
I’ve never read about an EMG causing a flare or a relapse but anything is possible. It could also have been the stress of worrying about the test, having it done & then worrying about the results.
AnonymousSeptember 26, 2009 at 11:13 am
Thank you both for your replies; I appreciate the information and help!
It’s probably coincidence, or something completely unrelated.
Emily’s_Mom mentioned stress…none of THAT around here!:eek: Onset of a bunch of weird neurological symptoms, which are causing me to miss work about a day a week; the economy being in the dumpster; being a 100% commission salesman in a “dumpster” economy…like I said…no stress here!:(
I was diagnosed with Meniere’s about eight years ago, at which time they found 4 plaque spots on my brain. Did a full MS workup and found nothing else, so they decided that the lesions were just from having an “active” childhood…bumping me head, etc.
I’ve been complaining to my GP for at least 4 years of pain and weakness in my arms. Like many here, I’ve been given “token” diagnoses and sent on my way. Been told everything from Fibromyalgia to TMJ to being a Drug Seeker to being crazy. When the EMG showed demyelination, it sounds sick, but I was actually happy! FINALLY, I thought…evidence that I’m NOT all those things written above! Then, when I read about CIDP, it read like the author was writing about me personally. Prolonged F-Waves, Decreased velocities, Myelin damage, fatigue, both sides effected, dysesthenias, intention tremors, etc. The intention tremors have progressed quite a bit…took me several tries yesterday just to tie my shoes!:o
I filed for FMLA coverage from work, at the suggestion of my GP, because of the severity of the symptoms, but not a “total” FMLA…just allows for 4 days per month for missing work due to symptoms and tests/appointments. I’d like to know how many out there work with this disease, because I gotta tell ya, if it doesn’t get better soon, I’m not going to be able work much longer. Combine that with the fact that two days after having my FMLA approved, I was counseled that my job is in jeopardy. NOT because of the FMLA, they said, but because of the economy and lack of sales. Like my flare up…must just be a coincidence.:rolleyes: I said to my wife, in my best “just kidding, but not really kidding” voice, that if this keeps going at this rate, I’ll be in a wheelchair inside six months! I read that many use a cane…I don’t know that I COULD use a cane, because of the primary involvement in my arms. I get so weak after the smallest effort! This has been the hardest part of all this so far…I’ve always been “Joe Fix-It” man around the house…rebuilt my daughter’s house for her, always going, always working on some project. Always took pride in being able to work longer and harder than most, and lift more than most. Now I feel like a sponge….soft, pudgy, and lay around. If I do 1 day’s “good” work, I’m shot for at least 3-4 days. Very frustrating.
I should mention that I had a cervical fusion two years ago, on C6-C7. There is an existing radiculopathy there, but I’m told it’s stable. Other chronic back and neck issues, but all the MRI’s, etc., show no severely pinched nerves or anything else. As the radiologists phrase it…they’re “unremarkable”.
For at least ten years I’ve had an unusual feeling in my legs at night: when I lay down, or often after sleeping for about an hour, I will get this “pain” in my lower legs. It starts at the knee, and feels like a burst of current running from my knee to my toes…when it hits the foot my foot and toes all hyper-extend. This lasts for 2-3 seconds, it fades, and then 5-10 seconds later, it repeats. I’ve tried stretching, ice, heat, etc.,…the only thing that works is Ibuprofen. No one has ever told me what THAT is….many tried saying it was restless leg, but a couple of specialists have told me that it’s definitely NOT restless leg syndrome.
So, anyway, I appreciate your posts, and really appreciate this site being here. It’s helps knowing you’re not “wandering in the wilderness” alone. Sorry this is so long, but venting feels good…ya know?
AnonymousSeptember 27, 2009 at 1:29 am
I have had CIDP since 1989. I battled for a diagnosis for 10 years before they actually nailed it down. I started active treatment in 1999. Since then I have had cervical fusion c6-c7, laminectomy at l4-l5, I have severe ringind in the ears and was a candidate for Miniere’s, but got stuck with “tinnitus” instead.
The symptoms of CIDP manifest after an autoimmune attack on the myelin sheath that surrounds the nerve axon. Once the myelin sheath is sufficiently damaged, the nerve cannot process the signals corectly. It may be burning, tingling, numbness, shooting pains, or fatigue, muscle failure, etc, etc.
I would blame the stress of the Dr. visit before the EMG. But in either event, the important thing is keeping track of what is happening to you. Keep a written record of changes for your Dr. appointment. I know that if I do not, I will only remember the recent stuff, and maybe forget something that might help.
If what you have is CIDP, the escalating symptoms would be a sign of an increase in an autoimmune attack. If these symptoms increase dramatically, you need to be seen pretty quickly. Neuromuscular maybe, neurologist better. In either event be prepared to be sent elsewhere if it is CIDP. Ask the neuro if he has any other CIDP patients. You do not want to be his first. I had to drive 3 hours for my appointments. The disease is so rare that most neuro’s don’t have the experience treating it.
If things are getting slowly worse, you will have more time. And it always seems like it takes forever to get a proper diagnosis. But one thing, no matter what you have. you need to press for a diagnosis. Many of these neuropathies can be treated to some degree. No treatment leads to permanent damage.
If your neuropathy gets acutely worse you will go downhill in a matter of days to a week maybe. You will know.
Good luck, hang in there, be patient, but be your own advocate.
AnonymousSeptember 27, 2009 at 12:20 pm
Thanks, Dick…all good points.
I started keeping a log a few weeks ago, but kind of fell away from it after this last neuro appt. I need to get back to it.
I’ll probably start a new thread, as that raises another question…when is something a “symptom” and when is it just “life”? Know what I mean? I almost feel like I didn’t distinguish symptoms well enough during my first neuro appt. He said that, based on everything I had mentioned, that there was no clear dx for any “one” thing. I’m thinking of writing everything down, but listing it according to severity/incidence, to better help with a dx. Something like “these are my top three concerns/symptoms, followed by secondary concerns, followed by things that may have happened once or twice. Does that make sense?
Like I said, though, I’ll start a new thread with a general question to all about when a symptom is a symptom.
AnonymousSeptember 27, 2009 at 4:02 pm
[FONT=”Georgia”][SIZE=”2″][COLOR=”Sienna”]Elmo, a suggestion … keep a blog for yourself. You don’t have to add daily, just when something jogs you into doing it. I’ve done that. At certain points I print out the newer info and insert it into a binder … lest my computer crash again!
If you want to read the “trials and tribulations of” — or the “perils of” Rocky, just take a peek @ [url]http://cidp-rocky.blogspot.com/[/url]
I have had it so much easier, so much less to cope with, than most of these folks. But I do find it hard to remember details when I check in with the doc.[/COLOR][/SIZE][/FONT]
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