So I am like the poster child for CIDP with a pre existing autoimmune disease in the lupus family and so many other things it blows the mind why no one thought about this before. My neurosurgeon walked in and said it was a no brainer which is funny from a neurosurgeon, but said I had to have another EMG specific for the CIDP. Thing is that's going to be over 3 months to get the test and start treatment. That sounds insane to me. I am a nurse so I know how the game is played, but I don't want to loose anymore function. Where r you all from, and how fast can you get EMGs where you live. I don't care if I need to travel, I just want to get better. Thanks.
Me too. I am a Respiratory Therapist in Las Vegas, took 4 months to see neurologist for the first time and that’s after seeing a podiatrist And an orthopod spinal surgeon who said that I had a real serious neuro problem. I was kind of suprised. After seeing neuro, Emg, lumbar puncture, MRI, NCS.Labs. My Emg and NCS are “markedly positive” according to one interpretation.I can barely walk 50 feet, with a very ataxic gait, my hands and feet have curled. And because my LP was the only thing that wasn’t “positive” my insurance is debating my dx. My first visit with the neurologists was my last day of work Dec 4, 2014. CIDP or MMN, almost the same thing and tx?
I am a respiratory therapist in Tennessee and with CIDP. I am in my later 70's and do not work much anymore and then only with special needs patients. I have had a problem for 15 years but the last year started to get really bad. Didn't want to walk up steps or generally walk anywhere. Was like my legs weighed 200 lbs each. Uneven surfaces were avoided and I had a record of falling about every 3 months. Learned to watch where my feet went all the time and improved. Have been on IvIG for 6 months and doing much better. Still have muscle weakness but am starting an exercise program for that to hopefully improve. My insurance BC/BS accepted my diagnosis with no problem after EMG studies and a spinal tap that was very positive for protein indicating inflammation. My doctor was into the tests within a month after my original appointment. Treatment shortly afterward.
Where in TN are you, I don't care where I have to go for the test but 3 months is crazy. I have an autoimmune clotting disorder in the lupus family so they can not do the lumbar puncture on me, but all my inflammation markers were elevated. The neuro said the EMG may or may not be positive, but insurance required it. He said either way he would start treatment and see what happens, butt the dang EMG is holding me up. Thing is I am only 43 and have a 13 year old . I have fallen 3 times in 6 months, and can't even brush my own hair. This is insane
I'm in Michigan. I waited 1 month for an EMG, which came back normal. After seeing 3 neurologists, all with 3-4 week office visit lead times, and 2 stuck on the normal EMG(not able to diagnose me), I called Cleveland Clinic. They got me in within a week. They re-ran the EMG the same day after my physical exam. It was conducted more detailed than the first. The physician called me the same night with initial results and scheduled the spinal tap 2 days later to confirm. It's amazing what a different experience it was from the prior.
I am really sorry you are going through this. I'm in my early 40's as well with a 5 year old & found the diagnosis stage maddening. You want to stop the damage as soon as possible. Once you get a diagnosis, ask your dr. to request an expedited insurance review for any pre-certifications. Mine was going to take up to 15 days; a call from dr. pushed along.
dac1223 said:
I'm in Michigan. I waited 1 month for an EMG, which came back normal. After seeing 3 neurologists, all with 3-4 week office visit lead times, and 2 stuck on the normal EMG(not able to diagnose me), I called Cleveland Clinic. They got me in within a week. They re-ran the EMG the same day after my physical exam. It was conducted more detailed than the first. The physician called me the same night with initial results and scheduled the spinal tap 2 days later to confirm. It's amazing what a different experience it was from the prior.
I’m in Forest Hills, NY - right outside of NYC. Took one visit to neurologist to get an EMG - within three days. Results were immediate. Same with MRI. Had the test and by the time I returned to Dr. office half an hour later, she had the results. Guess I’m lucky. However, kept having partial recovery from symptoms so turned down ivig for about three months. Then the falls and several broken bones brought me to my senses. Think my biggest problem was proprioception - did not know where my body was in space. After many months of physical therapy and two years of ivig, condition is much improved. Go somewhere outside of TN unless you are close to Nashville. Must be good facilities there. I’m originally from WV. Can’t imagine what kind of help one could get there.
Best of luck to you. Keep pushing and don’t give up.
I’m in Knoxville TN. I got an appointment b/c I raised a fuss and asked my Dr. To ask for an expedited appt. the EMG and NCT took a few more weeks but only a day in Nashville where I went for a second opinion. Physiatrists also do the neuro-electric studies too - and well.
I’m a retired surgeon so I guess we’re not intimidated by “the aystem”. — and you shouldn’t be either. Keep pushing. You are your own best advocate. Best of luck to you!
Wow, I am shocked. I live in WV, but I can usually get in to see my neurologist in a day or so. The first time I had symptoms, my family doctor arranged an appointment with my neurologist for 8am the next day. He listened to my story, then did an EMG right there in the office. He walked out of the office, and in 15 minutes came back to say that he had arranged for me to be admitted to the hospital. I was in the hospital in 30 minutes, and getting my first loading dose of IVIG that afternoon.
I would pull whatever strings you have to, in order to get diagnosis and treatment. As I understand it, some of the damage is reversible, but if it gets bad enough (damaging the axon, as well as the myelin), it might not be reversible. Prompt treatment is critical.
Let us know how you do.
Bill
Hi. I waited 3 weeks before checking myself into the er at a university hospital. They admitted me and ran dozens of tests to rule out many other more common causes. Eventually, I went to Mayo for another opinion. After a short phone screening they said they'd take me as soon as I could get there. I went a week or two after initial contact. They were amazing. They reviewed years of tests results, answered all my questions, did tests I asked for and some I didn't. I got the emg/ncs results within a couple hours from neurologist. The ncs/ emg revealed an acquired neuropathy, so the diagnosis stuck. He spent a long time going through all the results and treatment options with me too. I would go there again in a heartbeat. They have an Integrated Medicine program that is worth looking into and is covered by insurance. Good Luck.
Wow! I get so annoyed bc it’s so much work to appointments with my neuro. I am now in crisis with ivig not working & my symptoms getting worse every day. I originally got an emg appointment for 3 weeks away. I called every day for four days, telling the assistant I was in crisis and needed an appt sooner. They finally called on weds to schedule an appt for the following Monday. I also use a recording app on my phone to record every conversation. If you are in crisis & need treatment right away, then you need an emg appt now…definitely NOT 3 months from now. Call the office & ask to speak to the office manager. Kiss her ass & say “I heard amazing things about you and I just know you’re going to help me. Please please help me”. Good luck
Mine took awhile because mine only did them in the morning 3 days a week. Well my muscles and nerves don’t work then. I was hospitalized for something else and I asked for neurology consult got it done
If it gets bad enough go to Er. I couldn’t use my left leg It would give out or not even work when I tried to stand in it. I’ve been on it a year and a half and I’ve gitten a lot of function back. Still always to go. I would call around and find another office. Good luck
I've spent the past two years becoming a junior neurologist since CIDP still rips and roars below the surface of my axons and soul and hopes...
BUT... I am going to take matters into my own shaky hands:
http://www.instructables.com/id/Muscle-EMG-Sensor-for-a-Microcontro...
I have an electronics engineering degree, so this EMG tester looks like an easy build. I'm assuming the plotting function are Arduino code / hardware compatible ... again easy stuff! Problem is, I can only work with tiny components when in remission. This % (*&(*! disease runs and rules our lives.
On another note... as they had the ice-bucket challenge for ALS, we need the flamethrower challenge for CIDP. Anyone here into self-immolation? That ought to get the media's attention, a firing up over CIDP. Of course, I'm kidding, but we need the insurance companies to stand-up for HSCT so we don't all burn out on IvIgG and steroids and band-aide rig-ma-rolls and injections of eternal maybes.
the real gizmo:
http://www.ece.utah.edu/~harrison/ece3110/Lab5.pdf
estaban said:
I've spent the past two years becoming a junior neurologist since CIDP still rips and roars below the surface of my axons and soul and hopes...
BUT... I am going to take matters into my own shaky hands:
http://www.instructables.com/id/Muscle-EMG-Sensor-for-a-Microcontro...
I have an electronics engineering degree, so this EMG tester looks like an easy build. I'm assuming the plotting function are Arduino code / hardware compatible ... again easy stuff! Problem is, I can only work with tiny components when in remission. This % (*&(*! disease runs and rules our lives.
On another note... as they had the ice-bucket challenge for ALS, we need the flamethrower challenge for CIDP. Anyone here into self-immolation? That ought to get the media's attention, a firing up over CIDP. Of course, I'm kidding, but we need the insurance companies to stand-up for HSCT so we don't all burn out on IvIgG and steroids and band-aide rig-ma-rolls and injections of eternal maybes.
I'm a nurse from MO and can get tests done usually within the same week that they are ordered, sometimes it's the following week but that is usually b/c my boss can be rather grumpy about all my doctor's appts and b/c I have several health issues, I usually have a lot of maintenance appts. Because I schedule a lot of tests for my patients through centralize scheduling through the hospital, I know all the schedulers rather well (by voice anyways) and can usually pull some strings when scheduling my tests.
I live in St. George UT and my Neuro. can set tests fairly soon if you brought your other info. with you. It’s getting the appt that may take a little time but worth looking into.
RE:"I am like the poster child for CIDP with a pre existing autoimmune disease in the lupus "...&"and how fast can you get EMGs where you live. I don't care if I need to travel, I just want to get better.""
Thyroid diseases can mimick Lupus (False positives) have you had a Endocronologist work up?
How far are you from UCLA/USC?
