Muscle Fascirculation increase
AnonymousJune 8, 2012 at 11:32 pm
I have been diagnosed by by local Neurologist and pretty extensive Mayo testing with CIDP. We struggled for a while considering ALS but I did respond to IVIG with reasonable success and the electrophysical tests have indicated no. I have no sensory loss mostly just severe weakness in my arms & legs. Recently, It seems that the IVIG is not “holding” as well as it did at the start and i see a significant increase in fascircurulations and twitched in a ramdom pattern. biceps, triceps. quads, back calves etc. no particular pattern just more often. Any one else have similar experiences. Scared as can be.
June 9, 2012 at 1:17 am
Fasciculations are not unusual with CIDP or with other inflammatory neuropathies. In my case (of CIDP) they been minor and not a cause for concern. Here is a link to a short article on the subject of fasciculations in various disorders:
“All that ripples is not “Motor neuron disease””
Ashok Panagariya, Vinay Agarwal, Neeraj Agarwal
Department of Neurology, SMS Medical College, Jaipur, Rajasthan, India
June 9, 2012 at 11:59 am
Some people have reported twitching & other odd sensations while their nerves are being repaired.
AnonymousJune 10, 2012 at 2:56 am
I don’t want to either alarm or minimize your situation, but I think that I would rather have the muscle losses than the sensory losses. From those things I have seen and read, muscle losses seem to be recoverable, while sensory loss seems to be more permanent. In my own case, I respond with muscular recovery following treatments, but I have not regained any sensory response. I know that what you are going through is distressing and absolutely stinks. I hope that you find some recovery and are able to deal with the changes that CIDP brings.
Some things that I believe are essential to a recovery. 1. Stress relief, 2. Activity in moderation 3. Listen to your body because the rules are different.
1. Stress affects everything in your body. Your immune response, your hormonal responses, heart rates, anxiety, everything rersponds to stress. If you can minimize stress you stand a better chance of levelling your life. 2. Activity in moderation. You have to stay active or you lose flexibility, strength, recovery ability, and stamina. If you do too much, overdo, overexert, etc. you add stress to the system and recovery from the activity becomes more difficult. and 3. Listen to your body. If you get tired STOP. If you need to rest, take a nap. If you feel good, take a walk. CIDP changes what you can do and how much you can do it. But you still have a measure of control over your life.
I have been dealing with CIDP since 1989 and I still have periods of cramps, twitching, pins and needles, burning, etc. And sometimes I will go a month or more with no problems. It comes and goes, and it will always come and go. Take care of yourself and work your way through the harder times. Enjoy the good days. Life is different with CIDP, but it is still enjoyable.
Be good !
June 11, 2012 at 3:21 am
pat–i have both muscle and sensory loss and also have periods when i have a lot of fascilations. I think the important thing is how you are feeling when you have them. If you are feeling good and not getting weaker or are you feeling like you are losing strength with the increase of the fascilations? I also get them when i have overdone it with exercise.
I also felt the ivig wasnt holding me anymore and just recently switched to an immunosuppressant (rituxin) instead. Lori
June 11, 2012 at 3:27 pm
Hello! I also greatly feared, and still do fear ALS as well.. I have had twitching in my legs after exercise x almost 4 years now.. Never thought much of it since I didn’t have weakness.. and then I had a medical procedure go very wrong landed in the hospital with blood transfusions and BAM.. hello weakness!! everything was weak on me.. legs, especially hips, hands (couldnt’ hold on to anything, my phone, silverwear kids etc) then I started having breathing, swallowing and speech problems.. my facial muscles are weak etc.. first dr I saw said he thought I may have ALS (i was 30 years old when he told me this).. now over a year later and IVIG working and many neuros and emgs later my diagnosis is CIDP
though I am atypical – reflexes in upper extremities are dulled down, but legs/knees are brisk as they have been all my life.. Needle emg was normal for me all three times, and NCV showed one area of demylenation.. anyhow after my medical procedure went wrong and all the weakness started every single muscle in my body twtiched.. the 2nd IVIG took this all away and I felt almost back to normal… however since then sometimes IVIG works great, other times I swear they just gave me saline! As far as the fasics go.. I have them everyday.. though not nearly as much as I used to.. they are there.. From what I have read with CIDP and people I have met at the infusion center – IVIG effectivity not lasting for years seems to be common- then sometimes they add immunosuppresants or do more loading doses (I am still trying to learn about it all) or try other things as Lori mentioned
I too fear that maybe this is still MND.. maybe it’s all in my head that IVIG is helping.. but then I realize I just have PTSD from my first dr appointment 🙂 I AM better for sure.. can do thinks I coudln’t even begin to do a year ago, and ALS/MND does not respond to IVIG…. and then I can tallk myself down from the ledge.. temporarily until I freak myself out again!!
my diagnosis was sealed when they did the skin/epidermal nerve biopsies.. they were quite abnormal all the way up to the thigh.. It’s a low risk simple procedure if they offer it where you are!
Good luck, and So sorry you have to go through the physical and especially mental stress of this all!!
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