New with CIPD

    • Anonymous
      June 27, 2010 at 7:14 pm

      Hello to all,

      I would like to ask a question.. Does anyone experience faciculations with CIDP? Commonly known as muscle twitches. My nerve conduction study showed prolonged F-Waves. What does that mean?
      Thanks in advance for your responses.

    • Anonymous
      June 27, 2010 at 8:31 pm

      Welcome to your GBS/CIDP forum family. Know that you are not alone. You are in my heart & in my prayers. Yes I have had facial twitches, & twitches all over, small muscle jerking, & violent jerking all over. When the jerking became violent, I started taking neurontin. When the pain & jerking returned & I was started on lyrica. Lyrica works best for me. There are a lot of meds out there, just read the all the posts, threads & stories. Different meds. work for different people. I am eight & a half years into CIDP.
      Love & gentle hugs, smitty

    • Anonymous
      June 28, 2010 at 5:57 am

      Smitty,
      Thanks for the information. Today I begin the plasma exchange. Last week, I started the ivig. However, that did not work for me. This is all new to me.

    • Anonymous
      June 28, 2010 at 2:18 pm

      Hi Slk. Welcome to the forum. I think the prolonged F waves just indicate polyneuropathy. Give the IVIG a chance. Many people don’t have an immediately positive response. Did you have the recommended loading dose? i.e. 2 Grams of IVIG per kilogram of your weight? What are your symptoms right now? Good luck with the PE.
      Laurel

    • Anonymous
      June 28, 2010 at 4:02 pm

      I haven’t been diagnosed with CIDP, but I have the fasciculations all the time, constantly. I have had them since about a month after I got mild GBS. It seems like I have read a lot of people with CIDP having this as well. The twitches drive me nuts! Not sure what can help…gabapentin, I think.

    • Anonymous
      June 28, 2010 at 9:43 pm

      [QUOTE=laurel]Hi Slk. Welcome to the forum. I think the prolonged F waves just indicate polyneuropathy. Give the IVIG a chance. Many people don’t have an immediately positive response. Did you have the recommended loading dose? i.e. 2 Grams of IVIG per kilogram of your weight? What are your symptoms right now? Good luck with the PE.
      Laurel[/QUOTE]
      My doctor wanted to move along to plan B. I will get the cath put in tomorrow for the plasma exchange. I have faith in my neurologist as he specializes in neuromuscular diseases. Thank You..

    • Anonymous
      June 28, 2010 at 9:46 pm

      [QUOTE=jessicah]I haven’t been diagnosed with CIDP, but I have the fasciculations all the time, constantly. I have had them since about a month after I got mild GBS. It seems like I have read a lot of people with CIDP having this as well. The twitches drive me nuts! Not sure what can help…gabapentin, I think.[/QUOTE]
      Thank you for your input..

    • Anonymous
      June 28, 2010 at 9:51 pm

      [QUOTE=laurel]Hi Slk. Welcome to the forum. I think the prolonged F waves just indicate polyneuropathy. Give the IVIG a chance. Many people don’t have an immediately positive response. Did you have the recommended loading dose? i.e. 2 Grams of IVIG per kilogram of your weight? What are your symptoms right now? Good luck with the PE.
      Laurel[/QUOTE]
      My symptoms now are weakness in my legs. My gait is wide. The twitching drives me up the wall. I do think the dose was correct. Half way through the first IVIG treatment, I began to shiver and get cold. Also, I had a fever and headache. Thank you for your response..

    • June 28, 2010 at 11:38 pm

      PP may be what will work for you, but some people also need it in conjunction with something else. Also, by getting the pp w/in a week of the ivig, you are washing it all away. Typically, the pp would be done first and then followed by the ivig. That still may be an option for you. I also agree with Laurel, that you should give the ivig a little time, true, your doc may be on the path you need with pp, but you will never know if the ivig works unless you give it a chance. Did you get a full load? 2grams per kg of weight divided over 4-5 days? If not, that too could be a reason you did not see a result. Please give more info regarding the dose amount.

    • Anonymous
      June 29, 2010 at 3:54 pm

      [QUOTE=slk]…. My nerve conduction study showed prolonged F-Waves. What does that mean?…[/QUOTE]

      for what it means, study this:

      [url]http://www.ispub.com/journal/the_internet_journal_of_neurology/volume_10_number_2_6/article/f_wave_clinical_importance.html[/url]

      A summary from that site:

      “In a typical F wave study, a strong electrical stimulus (supramaximal stimulation) is applied to the skin surface above the distal portion of a nerve so that the impulse travels both distally (towards the muscle fiber) and proximally (back to the motor neurons of the spinal cord)…”

      “The distal motor latency ,Conduction velocity and the patients limb length are the parameters required for calculating F estimate. It is calculated by the theoretical time it should take for the F response to occur…”

      “Therefore, if F response is prolonged as compared to the F estimate it is suggestive of proximal nerve segment injury…”

      “It is a sensitive measure of polyneuropathy and radiculopathy.In Guillain Barré syndrome (GBS) even if the nerve conduction study in terms of distal motor latency and conduction velocity is normal, the F response could be the only parameter which would help in diagnosis. F wave latencies are prolonged in GBS affecting the proximal nerve segment. In amyotrophic lateral sclerosis, reduced persistence of F wave is attributed to the loss of anterior horn cell.”

    • Anonymous
      June 30, 2010 at 10:07 am

      Thank you for posting this indepth information about the f-wave. I had a lot of EMGs without understanding it. Love, smitty

    • Anonymous
      June 30, 2010 at 8:50 pm

      [QUOTE=yuehan]for what it means, study this:

      [url]http://www.ispub.com/journal/the_internet_journal_of_neurology/volume_10_number_2_6/article/f_wave_clinical_importance.html[/url]

      A summary from that site:

      “In a typical F wave study, a strong electrical stimulus (supramaximal stimulation) is applied to the skin surface above the distal portion of a nerve so that the impulse travels both distally (towards the muscle fiber) and proximally (back to the motor neurons of the spinal cord)…”

      “The distal motor latency ,Conduction velocity and the patients limb length are the parameters required for calculating F estimate. It is calculated by the theoretical time it should take for the F response to occur…”

      “Therefore, if F response is prolonged as compared to the F estimate it is suggestive of proximal nerve segment injury…”

      “It is a sensitive measure of polyneuropathy and radiculopathy.In Guillain Barré syndrome (GBS) even if the nerve conduction study in terms of distal motor latency and conduction velocity is normal, the F response could be the only parameter which would help in diagnosis. F wave latencies are prolonged in GBS affecting the proximal nerve segment. In amyotrophic lateral sclerosis, reduced persistence of F wave is attributed to the loss of anterior horn cell.”[/QUOTE]
      How does prolonged latency differ from reduced persistence of F wave? I understand that ALS in much worse. Thank You for your time.

    • Anonymous
      June 30, 2010 at 8:50 pm

      [QUOTE=yuehan]for what it means, study this:

      [url]http://www.ispub.com/journal/the_internet_journal_of_neurology/volume_10_number_2_6/article/f_wave_clinical_importance.html[/url]

      A summary from that site:

      “In a typical F wave study, a strong electrical stimulus (supramaximal stimulation) is applied to the skin surface above the distal portion of a nerve so that the impulse travels both distally (towards the muscle fiber) and proximally (back to the motor neurons of the spinal cord)…”

      “The distal motor latency ,Conduction velocity and the patients limb length are the parameters required for calculating F estimate. It is calculated by the theoretical time it should take for the F response to occur…”

      “Therefore, if F response is prolonged as compared to the F estimate it is suggestive of proximal nerve segment injury…”

      “It is a sensitive measure of polyneuropathy and radiculopathy.In Guillain Barré syndrome (GBS) even if the nerve conduction study in terms of distal motor latency and conduction velocity is normal, the F response could be the only parameter which would help in diagnosis. F wave latencies are prolonged in GBS affecting the proximal nerve segment. In amyotrophic lateral sclerosis, reduced persistence of F wave is attributed to the loss of anterior horn cell.”[/QUOTE]
      How does prolonged latency differ from reduced persistence of F wave? I understand that ALS in much worse. Thank You for your time.

    • Anonymous
      July 1, 2010 at 9:58 am

      Just to be perfectly clear, while I (almost) always give the link(s) to the data quoted, the data is just that- somebody else’s. I am not medically trained. The data I link to is merely my selection from the results pages that I search for.

      On the other hand, time I have plenty of. I also find it helpful to learn about these things.

      You are welcome.

      Try this from Wikipedia (if you trust wiki…)

      [url]http://en.wikipedia.org/wiki/F_wave[/url]

      [I]”F wave measurements

      Several measurements can be done on the F responses, including minimal and maximal latencies, and F wave persistence.

      The minimal F wave latency is typically 25-32 ms in the upper extremities, and 45-56 ms in the lower extremities.

      F wave persistence is the number of F waves obtained per the number of stimulations, which is normally 80-100% (or above 50%).[/I]”

      You’ll find, as I did, that F wave doesn’t mean anything in particular. It was just that the feature was first discovered while studying somebody’s Foot.

      So, again, my layman’s opinion, if the F waves are reduced in persistence it means they are not being properly reflected from the Anterior Horn Cell. This implies something wrong at or above the anterior horn cell. Latency, on the other hand, is a measure of the time traveled along the nerve. Thus, too much latency implies some trouble along the nerve pathway, akin to a traffic jam.

      Also, please recall from the previously quoted article, that F waves are not associated with sensory problems.

      As always, please seek competent medical advice from a neuromuscular specialist, preferably at one of the GBS-CIDP centers of excellence.

    • Anonymous
      July 1, 2010 at 11:17 am

      Thank you for this helpful information. smitty

    • Anonymous
      July 1, 2010 at 10:40 pm

      Thank you, Smitty.

      And, thank you to slk, without whose question(s) I would not have looked up this ‘stuff.’

      What I’ve learned from this is, other nerve tests being normal, or nearly so, then the F waves become critical in identifying GBS and in ruling in, or out, ALS and other forms of anterior horn cell disease.

      So, members, forewarned is forearmed. Go forth and find out what, exactly, your F waves are doing.

    • July 2, 2010 at 11:45 am

      SLK,

      Welcome and well met. I hope your PE treatments work for you as well as mine have.

      I’ve not had IVIG yet. I am currently treated by Plasma Pheresis alone. It’s been quite a journey. Dx’d positively for CIDP 7/08.

      Unfortunately faciculations seem to be part of this although it’s more pronounced a couple of days before my PE.

      It doesn’t seem to bother me much anymore. I am scheduled for a PE this afternoon and can tell it’s time. Some small muscles in my legs were twitching last night (I call that feeling “crawling”) last night and it didn’t prevent me from falling asleep or keep me awake. My fingers were twitching some last night and this morning as well. But most days I don’t experience it or it’s not noticeable to me at all. It’s certainly not as bad as it was a couple of years ago.

      If you want to know about my PE journey, look at the B-12 & CIDP discussion thread on the CIP/CIDP pages.

      Again glad you found us and I wish you well.

      Gary

    • Anonymous
      July 4, 2010 at 2:39 pm

      [QUOTE=GaryO Houston]SLK,

      Welcome and well met. I hope your PE treatments work for you as well as mine have.

      I’ve not had IVIG yet. I am currently treated by Plasma Pheresis alone. It’s been quite a journey. Dx’d positively for CIDP 7/08.

      Unfortunately faciculations seem to be part of this although it’s more pronounced a couple of days before my PE.

      It doesn’t seem to bother me much anymore. I am scheduled for a PE this afternoon and can tell it’s time. Some small muscles in my legs were twitching last night (I call that feeling “crawling”) last night and it didn’t prevent me from falling asleep or keep me awake. My fingers were twitching some last night and this morning as well. But most days I don’t experience it or it’s not noticeable to me at all. It’s certainly not as bad as it was a couple of years ago.

      If you want to know about my PE journey, look at the B-12 & CIDP discussion thread on the CIP/CIDP pages.

      Again glad you found us and I wish you well.

      Gary[/QUOTE]
      Thank you so much Gary…