Your First Attempt at CIDP Diagnosis (or GBS)….

    • Anonymous
      November 11, 2010 at 3:26 am

      Hi All,

      I was wondering how many of you were diagnosed, — kind of like the actual moment and how it came about. I am especially interested in those of you that went to the ER with symptoms and what they did there (including or excluding a correct diagnosis).

      I went to the ER, as I was sent there after talking to my PCP over the phone, with a right radial nerve palsy (the dx came later).

      I woke up one AM with a complete paralysis (switched between flaccid and spastic in my fingers) of my right upper extremity. I was paralyzed from the humerus (mid upper arm) all the way down to include all my fingers. At first it felt like it was asleep, but no feeling, sensation or movement in it at all. Just like a lead weight that I could move only from my shoulder.

      Upon arriving to ER, they could not confirm any diagnosis so they admitted me for further testing. I had multiple tests, mostly in the form of imaging, but no spinal tap, EMG, etc. After about 30 hours I was sent home with no answer.

      I kept getting accused of drug and/or alcohol use as there is a condition called “Saturday Night Palsy”, which happens when people pass out for long periods of time with their head lying on their arms, which are usually crossed in front of them.

      Following my discharge I had 3 appts with the neurologist that had seen me in the hospital. He ran tons of blood tests mostly (heavy metals, genetic studies, etc.), ones that had to be sent out of state to be run. No spinal tap or EMG again, though, and was left with the diagnosis of “right radial nerve palsy”

      His only suggestion was “to not put any pressure on my nerves”. And that was that, until it happened to the other arm about a year later. That is another story in itself which lead to my diagnosis, but what I am mostly interested in is people’s experiences with their initial presentation of CIDP symptoms and what they were told (even if it was incorrect).

      Please discuss!!
      Thank you ๐Ÿ™‚

    • Anonymous
      November 11, 2010 at 9:20 am

      I had a neck injury I was treating with a chiropractor for and then suddenly one day I developed pain radiating down my arms and legs and my left foot went numb. I was seen in the emergency room and underwent a battery of tests, including cervical and lumbar MRIs, CT scan of the head, MRA of the arteries, EKG, blood tests. The work-up cost nearly $10,000. I was told I had herniated disks in my neck and needed to see a neurosurgeon. I did, and the surgeon told me to go to physical therapy, which I did for three months. The surgeon also gave me prednisone, which looking back on it, probably masked my CIDP symptoms for awhile. The therapy helped quite a bit and I felt pretty good for about three months. Then I started having severe low back pain and my left foot went numb again, followed shortly thereafter by my right foot. I went to a physical medicine specialist who thought I probably had a herniated disk in my low back. Because of the foot numbness, he performed an EMG/NCV and told me he was astonished to find I had severe neuropathy in my lower legs and feet. He referred me back to my family doctor who had me undergo repeat spinal MRIs and a battery of blood tests again. After all the tests were completed, my doctor sat in the examining room and said that he didn’t “have a fucking clue” as to what was wrong with me, but that I needed to get to a neurologist as soon as possible. I was lucky enough to get an appointment with Doctor Norman Latov in New York City. I underwent an additional EMG/NCV, and tons of blood tests. At the end of my initial appointment, Dr. Latov told me I had a demyelinating neuropathy. He had me undergo a very expensive genetic blood test in order to determine if the neuopathy was aquired (treatable) or genetic (untreatable). It turned out to be acquired and Dr. Latov phoned me to tell me I had CIDP. The rest, as they say, is history.

    • Anonymous
      November 11, 2010 at 9:36 am

      i went to the er twice. feb 14 and they sent me home and said i had bells palsy. march 29th i went back and they said it was round ligament pain…i was 30 weeks pregnant. i looked at the dr. laughed and said, “call the neuro dr on call this is not round ligament pain.” i went within a week to being completely paralyzed from hip down and my hands were completely not useful. i lost 40 pounds in the matter of three months.
      i stayed at that hospital for a week. got a spinal tap. sent to georgetown hospital and got diagnosed on april 12. was sent to national rehab hospital and had my baby on may 6 at washington hospital center. i finally got home on may 9.

    • Anonymous
      November 11, 2010 at 12:34 pm

      I guess I was semi-lucky…in round 1.

      In 2003, I had quick onset of lower extremity paralysis followed, upper extremity paralysis, paresthesias, etc. First neuro did EMG and NCV testing on visit 1, which ironically, were normal then.

      A few days later, prompted by by choking on food and ascending paresthesias, he ordered MRI. Had to switch neuros due to insurance.

      Second neuro ordered spinal tap, which was positive for protein, and repeated EMG and NCV testing, which by now were grossly abnormal.

      I was dx with GBS and treated with IVIG.

      Felt fatigue, intolerant to heat and other symptoms for 6 years. Kept fighting thru the symptoms with the help of Cymbalta being told that it was just residual of GBS. But then in Jan of this year, 2010, another quick onset of acute symptoms very similar to 2003.

      Multiple hospitalizations and relapses treated with IVIG. One doc says “relapsing GBS,” and one says CIDP. Will have nerve biopsy soon.

      Regardless, I want my old body back.

    • Anonymous
      November 11, 2010 at 1:02 pm

      [QUOTE=joccarter]……………But then in Jan of this year, 2010, another quick onset of acute symptoms very similar to 2003.

      Multiple hospitalizations and relapses treated with IVIG. One doc says “relapsing GBS,” and one says CIDP. Will have nerve biopsy soon.

      Regardless, I want my old body back.[/QUOTE]

      Welcome to the forum, joccarter! I see you have been registered here a while and this is your first post. ๐Ÿ™‚
      Thanks for responding with your story!

      I hope that you have been lurking here for a while, as it is a great support forum, for sharing and learning, both.

      If you don’t mind saying, what state are located you in? It’s interesting where and why they do nerve biopsies. In my case, by the time I was actually at the “right” neurologist he “knew” my diagnosis even before EMG just from my long history (since 1996, – but most acutely over the previous 2 years prior to seeing him). I never had a nerve bx.

      I also have always been told (by numerous neuros), that “GBS only happens once”…then it becomes CIDP and “there is no such thing as relapsing GBS”. Do you know how your neuro that told you this is coming up with the dx as opposed to the CIDP one? It will be interesting to see what is decided if you care to share or post anymore.

      What type of treatment are you receiving now?

      One thing we can all associate with….WE ALL want our old bodies back!! Many of us have missed out on the best years of our lives.

      Hope to see around again ๐Ÿ˜€ ,

    • Anonymous
      November 11, 2010 at 9:38 pm

      I guess we were really lucky…..My husband had a really bad hurting in his shoulder and was seeing a chiropractor then started having the tingling in his hands and feet so the chiropractor told him that he needed to see his PCP. I got him an appt. the next day and his PCP got him in to see a neurologist the very next day. By the end of her exam she told us that she thought he had GBS but sent him over for bloodwork and an MRI that evening then back to her the next day for a nerve conductory test and a muscle conductory test and a spinal tap. The very next day she had us set up to start the 5 days of his first IVIG treatments.
      We have been so lucky to never have been in the hospital at all. Right now he is unable to walk and only has very little use of his right hand..can’t use his left hand at all but we are doing okay.
      We have gone through two 5 day treatments of IVIG with no changes and she has him on a steroid treatment now which we started last week.
      We’re just taking a day at a time and hope that healing is coming soon.

    • Anonymous
      November 11, 2010 at 9:47 pm

      ^^ Now, that’s impressive treatment!!

      I’m sorry to hear he is struggling so much still, but recovery does come slowly and every BODY is different.
      For me, it took several months of IVIG before I saw much improvement in my paralyzed arm/hand.

      Hang in there, thanks for sharing,

    • November 15, 2010 at 7:39 am


      I was lucky!!!

      Woke up one day feeling very weak, thought it was the flu. Went to the ER and the doc said I had a flu and sent me home. I could still walk slowly but had that sensation all my strength was gone. Flu/Cold was never like that before.
      At night I went to another hospital and the first doc, a neuro, who saw me said straight away “I think it is GBS”. He was a man around his 30’s; I’m impressed to this day of how quickly he thought it was GBS, reading the posts here abot how long it took for some people to be diagnosed with GBS.
      A team of neuros joined the first one, I was admitted and lombar puncture followed. Blood tests and all.
      Started on IVIG for 5 days. On the third day I was better, but found I also had pneumonia.
      On the fifth day I was feeling new, “normal”. Went home.
      3 months later, started to notice difficulties when climbing stairs, walking, very subtle.
      Saw the doc again for an EMG and more blood tests. The EMG showed it could be CIDP. That is still the best evidence for CIDP neuro and I have encountered.
      For one year I have been treating with IVIG and solumedrol. Since the GBS in 2006 I have never been to a point I was so weak that I couldn’t walk or stand up. But we stopped the treatment 2 months ago, to see what good it was doing and the result was terrible. I have not been able to walk for 2 weeks, can’t hold things, arms and legs are completely weak, I’m on a wheelchair now.
      I hope when I resume the treatment things will be back to normal.

      Take care,


    • Anonymous
      November 15, 2010 at 2:41 pm


      That is awesome initial treatment too! I am sorry to hear of such a set back with stopping treatment. Similar thing happened to me when we tried to stretch the IVIG from 4 to 6 weeks several years ago.

      It’s great to see someone diagnosed in the ER when they presented with sxs. I was hoping to see at least one person like that!

      Take care, hope your recovery speeds up and you do well.

    • Anonymous
      November 15, 2010 at 8:39 pm

      well if you can call a dx of cidp lucky. in april of this year i went to my GP with weakness and pins and needles. She suspectied GBS and sent me to an er that day. in the er basic exam they discounted GBS because i still had reflexes. a couple weeks later i went back to the er ,,, even weaker , they called a neuro to come see me , he examed me suspected GBS , sent me for a nerve conduction test , lumbar puncture. i was than admitted to the hospital for a 5 day treatment of ivig. i have since relapsed 2 more times and the dx was changed to cidp. im now on 100g of ivig every 2 weeks. and they have started chemo.

      so i suppose i an lucky to be being treated so quickly in comparison to some of the other people on our forum.


    • Anonymous
      November 15, 2010 at 8:46 pm

      Yes, Roland, not lucky in your dx of CIDP, but lucky in your diagnosis of CIDP rather quickly!

    • November 16, 2010 at 8:41 pm

      my symptoms were very slow starting, started with muscle twitching and cramping which i just assumed was overdoing it with sports/exercise. when mentioning it to my pcp at my annual pe he suggested i eat more bananas.hydrate more?? then came fatigue, cold feet, tingling, he suggested reynounds–i looked it up realized he was wrong, got him to get me in to see a neurologist, she did a emg/ncv and determined there was something going on with my nerves—then scheduled me for an appointment to return IN A YEAR!!! To say the least i was not impressed at all—fortunately my insurance is ppo so i dont need referrals. I contacted the Lahey clinic–a teaching hosp in mass, got in quite quickly, got a real diagnosis between there and sending bloodwork out to mayo. Started ivig 2gm per lb evry 12 weeks for 1 year. now at 2gm per lb every 6 weeks—-hoping that will do the trick!!! Lori

    • Anonymous
      November 16, 2010 at 10:42 pm

      PCP didn’t know. Neurologist didn’t know. Went to ER w/ symptoms of peripheral and bilateral pins and needles, numbness and balance trouble. Dx: Vitamin deficiency (even though blood work did not support this.) Second ER sent me for a Cat Scan which was negative. Sent home and told I was not in any immediate danger- needed to see PCP. I got into a University Hospital. Was told it was from effects of a flu shot. Told her I didn’t have a flu shot. I have a nursing background- I specificallyasked for an EMG and a spinal tap. I thought I had MS or ALS. She refused to do it. Assured me it was not either. She sent me to another Neurologist in the same University Hospital. I was told that over 100 plus tests had been performed and everything was fine. He asked if I had ever heard of “Psychosomatic Illnesses. I told him I had heard of it. He asked if I was see their “In house” Psychiatrist. Told him I would IF HE WOULD ORDER AN EMG AND LUMBAR PUNCTURE. Finally agreed to an EMG only. CIDP was discovered. I was sent home to await treatment. I couldn’t hardly walk. Had multiple falls, and became paralyzed from chest down before any treatment was started. Hospitalized over a month. Loading dose of 5 IvIg plus 1,000 mg Solumedrol given. Developed 3 blood clots in l.leg and multiple in each lung…….1 1/2 yrs. later I am still in wheelchair. I am not paralyzed but still a lot of numbness. Can transfer self and walk 100 ft. with walker and afo’s. I HATE, HATE, HATE this.

    • Anonymous
      November 16, 2010 at 11:13 pm

      I did eventually have a spinal tap with severly inc. protein levels and ended up at Mayo Clinic in Rochester. Nerve biopsy done to r/o Vasculitis. Received massive doses of Steroids via pic line at home. Now on Cellcept, Cymbalta, 3,600 mg Neurontin, etc.

    • Anonymous
      November 17, 2010 at 9:31 am

      I had symptoms in the winter of 2004. At first, the doctors thought they were caused by a bulging or herniated disk. After treatment for that did not work, I was sent for an MRI which showed no disk problems. After that, I got a referral to a local neurologist who did an EMG and saw abnormalities. The problems was that this is a small community, and he may never have seen a CIDP case before.

      Time was passing, my symptoms were worsening and the local neurologist and his partner did not know what to do. Ironically, I was told I could go to the ER if things got worse. This just convinced me that I had to go to a larger city to find more experienced doctors.

      Both an Internet search and a “word of mouth” referral from a doctor friend in New York City led me to the same place — the Peripheral Neuropathy Center at Weill-Cornell. Dr. Chin saw me a month after receiving my “cold call.” His neuro exam led him to strongly suspect CIDP, but he wanted to confirm it with an EMG/NCS test. He extended my appointment to the next day, did the test, made the diagnosis and wrote the orders for IVIg. Within less than a week, I was getting treatments here in Burlington, VT. For 6.5 years since, the same visiting nurse has come to my office to administer the IVIg. She will be here today.

      Although I am in a relapse or flare right now, I still consider myself very lucky. Diagnosis and treatment were early enough that I did not have significant axonal damage. When I am not in a flare, I can do virtually everything that I could before the original onset of symptoms.

      Brian Sullivan
      Burlington, VT