How long after onset did you begin to actually lose strength, not just weakness?

    • January 22, 2014 at 5:47 pm

      Hello, all. I am still waiting to be diagnosed. I have progressively worsening symptoms of CIDP for 3 months now but all my tests (EMG, NCV, spinal tab) came back normal last week.

      The only thing I can think of is: as of today, even though I feel very weak and shaky and noodle like, I haven’t lost much strength yet. I can still climb stairs, rise from sitting easily, just very tiring and labored. I can still lift weight, but just shaky. No foot drop, can easily life arms above head, even do push ups. I am as shaky and trembling as can be and getting worse. Hands are VERY shaky. Typing has been much harder this past week. Using utensils is tricky. Balance is bad and getting worse. Daily activities give me cramps as if I just ran a marathon. I am basically a pile of shaky jello, but my strength is still intact for now.

      Is this the possible reason that why my tests are still normal? So I need to wait till I lose strength for good? Then hopefully tests will show abnormality? I seem to read some people have abnormal tests even before they lose strength. I am so worried I am one of those CIDP’er who has all normal tests.

      One thing worse than having CIDP is having CIDP but have nothing to back it up.

    • January 22, 2014 at 5:58 pm

      Another question, for those you received abnormal tests for your diagnosis, how much strength did you lose at the time of tests? I am most interested in CIDP onset, not GBS onset because GBS seems much more obvious.

      Thank you so much in advance!

      Terrified newbie

    • January 31, 2014 at 6:40 am

      I can’t remember what the neuros told me when I was initially getting tested, but I want to say they told me that the damage done can lag a little before it shows up on EMG.. DO you have sensory symptoms as well, or just muscle weakness? have they tested you for things like myasthenia/lambert eaton etc? what parts of your body are affected? I had the GI issues first for a few months and then the neuro symptoms started.. it was about 6 months from time of “hey something is majorly wrong here”, until I got IVIG… I went from just having tingles/paresthesias waking me up at night in my feet, then hands, then shoulders up to tip of tongue to not being able to breathe or swallow, whistle smile etc.. My breathing is what landed me in the hospital to get IVIG.. My initial EMG/NCCV had some mild demylenation around one knee, which was my first symptomatic area (maybe about 3-4 weeks after i felt that weakness- floppy knee).. otherwise my tests are generally more negative (aside from ANA, epidermal nerve biopsy, autonomic testing etc)..

      GOod luck! I hope you find answers and treatment soon! 🙂

    • GH
      January 31, 2014 at 8:21 am

      You can’t apply someone else’s experience to predict your own, because there is so much variation. I lost leg strength fairly quickly. About a month after onset I couldn’t stand. I was diagnosed on the basis of my presentation alone, and this was supported shortly afterward by a spinal fluid test, so treatment was begun. It was several weeks before I had the NCV test and several more before I had the EMG. These were just to characterize the disorder, I suppose.

    • January 31, 2014 at 9:55 am

      bny806, thank you for the reply. May I ask how long the lag time might be for EMG? How you were diagnosed at the last? If your EMG and lumber were both normal, how did they decide it was CIDP?

      My onset was 3.5 months ago and one month after vaccine. I have been getting progressively worse ever since. I have a lot of sensory motor symptoms and aotonomic. Numbness (getting worse by the day), prickling, burning, zapping, night sweat, mild diarrhea, mild dizziness, etc. Muscle twitches, aches, cramps, weakness. No stamina. Everything feels heavy and labored. Major balance issues. Tremors in hands. Locking fingers. Shaky feeling over all. Fatigue. Symptoms are very symmetrical and all my limbs affected. Sensory symptoms seem more distal than proximal. Motor seems about equal between distal and proximal.

      GH, you are right. Right now I can’t do anything but wait and learn about more possible tests I can do. Maybe a complete neuropathy panel? I just worry again even if I hit the right test, it will be too early right now. It is terrifying.

    • Anonymous
      February 1, 2014 at 4:37 am

      My onset was staggered over 6-9 months, about 20 years ago. Spinal taps showed no to slightly elevated protien levels. We kept watching the trends. Then I weakened, initally drop foot, then to the point where doing stairs was darn near impossible. The next spinal showed elevated protien levels, thus a diagnosis was made, and confirmed at Mayo. Thanks to the late Dr. Stevens for sticking to my situation and getting me diagonsed.
      Each of us reacts and responds differently to CIDP. You gotta find a way to get past the worries. For me I went to a GBS / C5DP support group meetings. Lisening to what was being said hurt, depressed me, but in the end was my method for understanding why I could go from an active golfer and downhill skier to someone reliant on AFO’s and crutches.
      See my other posts for my ups and downs over the years!

    • February 1, 2014 at 10:45 am

      RandyB, thank you!

      May I have a few more questions?
      How much time after onset was your first spinal and second spinal respectively? So you waited 9 months till stairs were almost impossible for the second spinal? Did you also have EMG? When did it show abnormality?

      Sorry so many questions!

      I have developed night sweat (especially around neck and chest) this past week. It is terrifying watching the disease develop everyday.

    • February 2, 2014 at 9:37 pm

      Hi! Yes, it is extremly terrifying having something that no one seems to be able to figure out.. as you wait for all of these tests, and then are declining in the meantime.. I felt that they just didn’t get it.. I worsened and worsened until I crashed.. my first EMG was probably about 3-4 weeks after I noticed the weakness.. the first time I felt focal weakness was in my right knee, and that’s where the demylenation showed..however I Had foot tingles and numbness before that.. that moved up to the thighs.. and then the hands.. and all the way up to the face.. I didn’t even realize I was numb or tingly, as I had a new born.. I just was in such a fog.. I was 6 weeks post partum when I had a surgical procedure go very wrong.. ended up with internal bleeding etc.. anyhow.. I got bad GI issues after that for about 6 weeks and then the neuro symptoms started..
      I felt awful, weak, GI issues, and then autonomic issues (resting HR went from 60’s to 140’s), I started walking funny.. and then maybe a week or two after my legs were weak, I woke up and went to grab my phone and couldn’t.. I went to switch on the light and couldn’t.. I had a floppy like paralysis.. The tips of my fingers (all fingers both hands) where like jello, no matter what I did.. microwave buttons, holding spoons, pens, you name it – i coudln’t do it.. I even went to cry and break down in tears, but at that point my face woudln’t even move to make the “cry face” which was even more upsetting… this worsened and lasted a few months before It affected my breathing so much that my pulmonary function tests plumented and I ended up in the hospital

      Everyone kept saying I sounded like CIDP.. but the test was mildly abnormal, not enough to fit a for sure diagnosis..I had about 4 other EMG/NCV in those next few months – all totally normal.. I had an epidermal nerve biopsy showing significant abnormality consistent with non length dependent neuropathy.. my ANA was pretty high, and I believe most of my other test ok (including one LP).. During the hospital they repeated my LP, and the protein was elevated.. however i also had meningitis from the IVIG.. so no one knew how to interpret those results.. ANYHOW.. after tons of testing (autonomic testing was positive).. they said they all think I Have inflammatory neuropathy, likely a CIDP variant.. After the 1st round of IVIG I thought I was better, but was also so doubtful, I thought maybe it was just placebo affect.. after the 2nd round I woke up on the 4th day and grabbed my phone, turned on the light, smiled , sucked thru a straw… and mostly picked up my kids!! I felt almost completely normal again.. truly a miracle.. ( sorry I ramble)!!

    • February 4, 2014 at 12:06 am

      bny806, thank you for sharing your experience. I am glad to see you are doing well! I hope you will continue having great response to IVIg. I can’t believe all your tests were normal. These tests are really just not sensitive enough. My biggest fear is I am one of the few with bad symptoms but normal tests. How will I ever get diagnosed?

      I started to have classic CIDP symptoms after a flu shot a few months ago and am getting progressively worse. But the tests to date are not conclusive yet. I know there can be a lag in test results so I am just hoping my next test will beat the lag and show abnormality. In the meantime it is terrifying to do nothing and watch symptoms getting worse and damages being done.

      Right now my balance is bad and hands tremor very bad, so I am hoping the next NCV/EMG test will at least reflect that. My last LP was high normal so I am hoping given it a bit more time it will climb up so I will have a diagnosis and be able to start treatment.

    • March 2, 2014 at 5:44 am

      A quick update, just had another EMG NCV, still within normal range. So frustrating! My balance is noticeably worse. Tremors, vibrations, muscle spasms and aches are all getting worse.

      My neuro is very kind and promised to watch me through this ordeal until I get a diagnosis. He will see me every 6 weeks until something shows up in tests. If I have a quick decline I can call him any time. We discussed about a sensory motor antibodies panel and he will likely do that one.

      He is very upfront and told me at first he also thought it was nothing serious, until I told him about the flu shot. He has seen too many vaccine injuries to ignore the connection. If it weren’t for the flu shot (thankfully I kept the record) he would still have thought it was all in my head. Well, small comfort.

      I told him I would have given anything to go back in time and not to have the vaccine.

    • March 2, 2014 at 9:43 pm

      GSLM, sorry to learn you still have not started treatments. Please read the following article for a current and comprehensive review of CIDP and related diseases, it was written by the renowned Dr R Lewis:

      The article contains a symptoms review, diagnostic and testing protocols that may be of special interest to you. The waiting game is no fun, especially when demyelination may be progressing, I hope you get treatments soon.

    • June 15, 2014 at 5:31 pm

      Finally, a diagnosis. Just as my neuro and I suspected, CIDP caused by the flu shot I received last fall.

      Now I can be added to the long list of vaccine victims. Another life ruined by a flu shot.

    • June 16, 2014 at 12:33 am

      How do you know the flu vaccine caused your CIDP? The foundation has found little or no evidence for flu vaccine as a cause of CIDP. The bi-annual symposium has had lengthy snd detailed expert presentations commending the vaccine. I am sorry you have this nasty stuff. After over 20 years wi th it to include 4 weeks on a ventilator I think I know how you feel and I wish for you the “success” the treatments have brought to me. Hang tight!

    • June 16, 2014 at 1:09 am

      Gslm, I am so sorry about your diagnosis. My CIDP was caused by a flu shot too, the H1N1. It happens a lot. There is a vaccine fund you can file against. Hang in there!

    • July 7, 2014 at 7:08 pm

      I would appreciate somebody posting how they know their cidp was caused by the flu shot. Thanks

    • August 11, 2014 at 3:05 pm

      A quick update. Vaccine fund filed. Now the long wait starts.

      My local neuro said he has seen thousands of vaccines reactions, most are minor but some are severe such as CIDP and the severe ones are definitely grossly underreported for various reasons. My Mayo neuro after hearing my vaccine story said and I quote “it is truly surprising how often that happens”. I am lucky at least my neuro’s are not the rabid denial types.

      So folks, be vigilent. If you suspect your neuropathy is caused by vaccine, follow up with the vaccine fund. They know. Or there wouldn’t be that fund.

      Hope all of you have good results. And don’t let those who refuse to acknowledge stop your fight. You deserve every last penny.

    • August 30, 2014 at 10:45 pm

      Good for you, gslm! You are now getting somewhere positive with your fight for your health and for justice!

      It was heartbreaking to follow your posts in this thread because I could just see how scared you were. And later to learn that you finally were diagnosed with CIDP and it was the flu shot that caused it; so very sad, yet so not surprising at all.

      I really hope your treatment is working and you will relearn what you loved to do and things go well with the VICP.

      Hang in there and best luck!

    • March 18, 2015 at 3:17 pm

      My neuro also thinks the flu shots caused my CIDP. The hospital where I worked insisted we had to have the shots – I had never had one before. After the second year flu shot I began to have tingling in my lower legs. The tingling continued for three years and then I began to feel like I had a pair of tight sox on. Still no weakness. After getting to the neurologist and being tested and diagnosed as having CIDP, I still had no weakness. It came on very slowly, not like I read in so many of the posts. The first tingling I felt was 16 years ago, but now I definitely have weakness.

    • March 20, 2015 at 9:35 am

      I’ll be honest. None of my symptoms made sense to me. For me it started with GI issues, then my knee hurt walking down hill, then the numbness and tingling started – then as time went on it turned into extreme fatigue and memory loss and my eyes – oh how my eyes hurt. I thought it was all just natural aging… My neurologist asked me (during the lower emg) if I had numbness and tingling in my feet or legs? I said, “Yes, how did you know that?” I thought this was just part of aging. He said, “How old are you?” I told him “45”. He laughed and said, “No, this is not a normal part of the aging process.” I never thought to tell him this information in my first visit with him – because of what I thought was going on where that is concerned. I have wore high heel shoes for years, sat in uncomfortable desk chairs… I had no reason to think it was something more serious.

      But to your question. My symptoms started in 2010. I would say symptoms became progressively worse over the course of a couple years – but 2013 to now the symptoms have become much worse and progression even faster. Until my first IVIG I had a new symptom pop up every 3-6 months.

    • April 7, 2015 at 10:44 am

      Hello all! My name is Arthur. I was just diagnosed on 4/3/2015 after years of slowly progressing muscular weakness and pain, beginning in 2007 . I have had MRIs, blood tests, a biopsy, prednisone and a host of incorrect diagnosis (still have bills for all of this). It was not until late last year when I began to experience chronic weakness and loss of strength in my shoulders and legs (began tripping and finding it more difficult to walk) that I knew I had to become more aggressive in finding out what was wrong.

      In January, my primary prescribed prednisone while trying to find an opening at any local neurology clinic. It helped while I was on the full taper dose. Once I tapered off, the symptoms returned with a vengeance. Now I was experiencing tingling and weakness in my hands and feet. This progressed to foot drop then my calves stopped working. Now I can barely walk without a stick. I cannot open jars and even struggle opening snack bags, like I need to do that! 🙂

      I was finally able to get an appointment with a local neurologist. This was only after constant calling by my wife, my primary and other concerned friends. If they had not helped, I would still be waiting for an appointment scheduled for May! They did the conduction study and EMG. No doubt about it. I was diagnosed with CIDP!

      Now I am waiting for the insurance company to approve treatment. The Neurologist want to start with a week of Plasmapheresis. Then move to IVIg if necessary.

    • April 7, 2015 at 5:21 pm

      Arthur, I like the approach your Neuro wants to take! Start with PE then move to IVIg. The PE will remove most of the antibodies that are attacking “self” (some are deep in the tissue and may not surface during initial PE). The IVIg will keep your immune system from producing more.

      If my neuro had taken the approach your’s is taking, I would be walking today. I hope you regain your lost abilities quickly. Let us know how the treatments work for you.

    • April 26, 2015 at 8:13 am

      I just thought that I would add my recent experience if it helps or just adds to the confusion. In early Nov. Of 2014 I notice tingling and numbness in both legs, symetrically, over a 3 day spance. I went to the hospital and a Physicians Assistant recommended that I see a nuerologist. After taking near a month to schedule an appointment, he at first thought that I had GBS but since it had been four weeks, although the initial symptoms were acute, had slowed significantly (slowed not stopped). After 21 blood tests, EMG, lumbar puncture and two MRI’s a diagnosis of anti-MAG was made in late Dec. The diagnosis was from one of the blood tests though as all of the test were normal except the one blood test for anti-MAG and slightly slower EMG. I was put on 10mg prednisone but did not notice any improvement. I did not notice much motor deficit but the tingling was going farther up my legs, tingling in hands, some facial tingling, ataxia, tremors in right hand and occasional breathing issues. In early Feb I stared the 5 day IVIg treatment. A week later I developed a Deep Vein Thrombosis in my leg. I started to feel better though. I did have have a very rough 4 day stretch but then except ataxia, not bad. The last four days have been bad again.

      I hope this helps.

    • June 4, 2015 at 3:02 pm

      strength & weakness: 1 year (drop foot)

      weakness: 21 years

    • June 4, 2015 at 3:43 pm

      Here is an update:

      I spent 10 days in the hospital in April having Plasmapheresis done. The experience was nothing like I thought it would be. Many act like it’s painful. And to some it may be if they are prone to high anxiety or have a very low pain threshold. You do get tired of the needle sticks for blood work everyday, sometimes twice a day. For what it was, it was quite pleasant. I did find that I am allergic to latex and adhesives. Be mindful of your blood pressure. Mine dipped really low a few times. Avoid Benedryl as it will lower your BP.

      Unfortunately, it did not help me with the symptoms. Maybe I went too long before being diagnosed.

      A few weeks ago, I underwent my first 5 days of IVIg. It too wasn’t a bad experience. I did get fever and chills one night. But I was diligent in staying well hydrated. That is the best thing you can do for yourself. Drink lots of water beginning a few days before through a few days after. Again, drink lots of water throughout.

      I go for another round next week. So far, not much has changed. But I know it can take a while. While my employer was been very accommodating by allowing me to work from home, that has run out. As of Monday, I will be on unpaid leave while I wait for short-term and then long-term disability to kick in.

      I know I included information that was not asked for in this thread. I just figured someone reading it one day may be wondering.