Non-linear recovery (tell me I don't have CIDP)

    • June 9, 2017 at 11:10 am

      A little history: Woke up weak and fatigued on March 8th of this year. Thought I had the flu, but it never went away. PCP did lots of blood work, everything came back normal. I really knew something wasn’t right. At the beginning of April, my legs got a lot weaker within days, followed by my arms. Went to ER on April 9th, they suspected GBS but my deep tendon reflexes were intact and my LP came back normal. They started IVIG that night anyway. The next 2 days I got worse fast. I couldn’t swallow safely, having trouble walking and urinating, couldn’t grasp. My reflexes started to go. But with 2 more IVIG treatments, I had rapid improvement. EMG on day 4 confirmed GBS. I went home after 6 days of treatment feeling VERY lucky that my case was so mild. I was very weak and tired but I could walk short distances, eat safely, do most ADLs if I paced myself. I got to the point about 2 weeks ago where my strength was back to near normal and I felt pretty good if I took a nap every day and didn’t overdo it on physical activity.

      About 10 days ago I started having pain in my limbs, which I had never had at any point in my illness. The pain has gotten progressively worse and now in the afternoon/evening it is horrible. Worst in my hands and feet. My fatigue has gotten worse too. I have a good few hours in the morning after coffee, then I just want to sleep for the rest of the day. I’m grouchy and snap at my kids. It’s horrible. Numbness, stiffness, and tingling are increasing as well and I’m having a hard time grasping with my hands. Over the last couple days my legs have been shaking when I walk down the stairs, which hasn’t happened since the acute phase of my illness. My limbs haven’t gotten significantly weaker yet, but I’m afraid it’s coming.

      This illness seems so different for everyone that has it, that I don’t know what to expect. I know pain and fatigue are expected long-term symptoms after GBS, but I was also told that I should only get better, not worse. I guess I’m just looking for experiences from others, so I know whether these symptoms are typical of a normal GBS recovery, or if they might be signs of CIDP. Thanks for reading. 🙂

    • June 9, 2017 at 7:33 pm

      A lumbar puncture is the usually they way CIDP is confirmed. Tell tale signs of CIDP, are the glove and sock syndrome. Where you have numbness/pain/loss of motor control from your knees and elbows down.

      To me, your symptoms seem like CIDP and I’d see a neurologist who has dealt with the disease ASAP and get it confirmed and treatments restarted. Best of luck.

    • jk
      June 10, 2017 at 5:06 pm

      There are some reports that Spinal Tap is positive in only 80% of cases. This website lists the following ways to Diagnose CIDP.

      “How is CIDP diagnosed? Diagnosis of CIDP is based on the symptoms of the patient: Symptoms such as loss of sensation (numbness), abnormal sensation (tingling and pain), loss of reflexes, and weakness (difficulty walking, foot drop)
      Tests such as nerve conduction and EMG (usually showing a demyelinating neuropathy), spinal fluid analysis (usually showing elevated protein with normal cell count), blood and urine tests (to rule out other disorders that may cause neuropathy and to look for unusual proteins)”

      Dr. Lewis expands on reflexes with this, “Deep tendon reflexes: Reflexes characteristically are diminished or absent even in regions with only mild weakness.” As well as other clinical (in the office) and laboratory tests.

      Do as BryanF says, If you haven’t been seen by a Dr. outside the ER you might consider finding a neurologist familiar with GBS?CIDP.

    • GH
      June 10, 2017 at 8:28 pm

      It could be CIDP. It doesn’t seem much different than mine. A spinal fluid test will usually support the diagnosis of GBS or CIDP, but a negative result is not definitive. It is the total presentation of symptoms that matters. In unclear cases, a nerve biopsy can help make the diagnosis.

      You mention a PCP, but not a neurologist. You need a neuro, stat (asap).

    • June 10, 2017 at 9:05 pm

      Thank you all for your responses. I’m feeling worse every day. I’m going to call the neurology clinic on Monday. I have a neurologist (the one who treated me for my 6-day hospital stay) but my follow-up appointment is not until July. They were booked that far out when I scheduled in April. I’m not sure how I’m going to get in sooner, or if they will refer me elsewhere.

      My hospital EMG showed “acute polyradiculoneuropathy with subtle demyelination” so my GBS dx was pretty certain. I’m nervous about what this means going forward, if I will be able to return to work, etc. I think you all are right though, in that I need to go in ASAP.

      • GH
        June 10, 2017 at 9:50 pm

        aamcw, it is impossible to say what it means going forward. There is a great deal of variation from one case to another. It is important not to lose hope and to work toward the best recovery you can manage. I was paralyzed below the neck for a few weeks and paraplegic for a few months, but today I walk without assistive devices and am normal above the knees.

    • June 12, 2017 at 8:49 am

      When I knew something was wrong with me I got on the phone that day and started calling every neurologist in
      my health care network until I found one with an appointment open that day. I got lucky as the neurologist I have is a fantastic one. Please don’t wait on this.

      Let us know what happens today with the Neurology clinic.

    • B
      June 13, 2017 at 11:44 pm

      I have a CIDP diagnosis without findings on the lumbar puncture. If you are concerned about your condition and can’t get in to see a neurologist, you might be able to see one through the emergency department. Or perhaps your primary care can pull some strings with someone to get you in sooner?

    • June 19, 2017 at 7:41 pm

      I am so frustrated right now. After calling nonstop, I was able to get in to see my neurologist last Wednesday, and she scheduled an urgent repeat EMG for last Friday. She also prescribed Gabapentin for my pain. I took the Gabapentin once, but woke up the next morning with my heart racing an a heart rate of 104 lying in bed. I decided to hold off taking it again until I talked to the doctor again, especially as the pain is manageable.

      I went in for the EMG, but the doctor (different one) did not find anything of concern. I asked him why this might be, when I’m so much weaker now after getting better. He told me that the abnormalities in my original EMG were very subtle, so maybe I’m not far enough into the disease process this time for it to show up. This makes sense, as the original EMG was done at a time when I could barely walk or lift my arms, and I’m not as weak now. He said he’d talk to my doctor and she would call me over the weekend.

      I also spoke to my oldest friend, who is a neurologist in another city, on Wednesday and Friday. She said she would give me IVIg right away and not wait for the results of the EMG. She also said that if the demyelination process is mostly affecting my small nerve bundles, and not the large ones, right now, that an EMG would be normal, and that EMG results lag far behind symptoms.

      So I get a message on MyChart from my doctor on Sunday night saying “good news! EMG is normal! Let me know how Gabapentin is working.” I responded that there was no improvement in symptoms and I would like to discuss starting IVIg again, despite the EMG results. I also left a phone message with the medical assistant letting her know my issue with the gabapentin. I got another message from my dr. this afternoon saying there was no indication for IVIg because my nerves are normal and that what I’m experiencing is residual pain from the original illness, which the gabapentin should help with. Grrr!

      I left her a long, adamant reply telling her that the pain was the least of my worries and it’s the disabling fatigue and weakness I’m concerned about. If I don’t go back to work in July I may lose my job. I’m out of FMLA time. I gave her several clear examples of how I was fully functional with normal strength and only mild fatigue 3 weeks ago and can’t even take care of myself now, let alone care for my kids or work.

      I get that she needs clinical indicators to justify treatment, but it seems like she’s completely disregarding my experience. Something serious is going on here and I need more than a pill to lessen my least serious symptom. I’m afraid I will have to lose my job and my ability to walk before anyone will do anything.

    • June 19, 2017 at 9:10 pm

      Here is a good summary about the various autoimmune disorders. Perhaps it can help you determine what you might have and what to do about it:

      As far as GBS/CIDP goes and knowing whether that is exactly what you have, here are two publications that describe the primary ways to confirm it:

      This discussion thread may provide additional info that may help you and your doctors with diagnosis:

    • B
      June 19, 2017 at 9:50 pm

      AAMCW – do you live in the US and do you have private insurance? If so, you can google your insurance company and IVIG guidelines for when they will approve it and what lab/test/clinical results must be present. If you are in a grey area, you’ll need to your MD to really advocate for you, and it sounds like the neuro does not think it is indicated. I’d start the process to get a second opinion, hopefully with a Foundation Center of Excellence — someone who specializes in CIDP. It can take weeks to get an appointment, and you can always cancel it if you decide you don’t need it. And of course ask to be put on the cancel list if they can see you sooner. Good luck — I know this is very frustrating!