Newly Diagnosed

    • Anonymous
      October 30, 2013 at 5:29 pm

      I was just diagnosed on 10/22/13 and it has been quite a journey. I’ve had EMG’s, MRI’s, CT scans, Lumbar Puncture and tons of blood work. The EMG’s were abnormal, MRI’s and CT Scans normal, high protein in spinal fluid and all blood work was fine. The doctor thinks that even though the only test that indicated CIDP was the lumbar puncture she want to go ahead with IVIg treatment. She told me if my symptoms progress or I don’t respond to IVIg then she’ll change the diagnosis to ALS.

      This is where things get interesting. I live in Minneapolis and I was diagnosed at the Mayo Clinic. Mayo is out of network and can’t do the pre-authorization needed for IVIg. I talked with my GP and asked if she could refer me to a local infusion center and do the pre-authorization and she said she’d see what she could do. The University of Minnesota has an infusion center but won’t set me up for IVIg until one of their doctors sees me. I called yesterday to get an appointment and the earliest available is Nov. 20th.

      My symptoms are weakness in both arms, muscle atrophy, foot drop on the right side. I also can’t raise my right arm. The right side is weaker than the left and I’ve started having strange feelings in my right leg.

    • October 30, 2013 at 9:39 pm

      Have you considered getting IVIG treatments at home?

      Getting IVIG through home healthcare is usually covered by insurance and is a lower cost alternative to a hospital. You and your doctor would pick an agency. Make sure the agency is listed as a ‘contracted provider’ by your insurance and confirm they will take your insurance as payment in full (maybe your insurance requires a deductible and/or some cost sharing). Then your doctor would need to write prescriptions for it.

      Another option to consider would be subcutaneously administered IVIG. This is a newer option to the traditional IV’s. Subcutaneously administered IVIG does not require an IV or a port and some patients can give it to themselves, lowering costs substantially. Learn more about it here:

    • GH
      October 31, 2013 at 12:01 am

      Why not see a neurologist in your network? A General Practitioner normally refers such cases to a neurologist.

    • Anonymous
      October 31, 2013 at 12:08 am

      I did start with a local neurologist but after he looked at my test results he didn’t feel comfortable making a diagnosis so he referred me to the Mayo Clinic.

      The pre-authorization for IVIg has not been approved by my insurance company. My GP is working on that now. I’ve thought about having it done at home. The Mayo doctor wanted me to have 3 infusions the first and second week followed up with once a week for the next 11 weeks. I’ve thought about trying to get the 11 week portion done at home. I have a heart condition along with some kidney problems so I thought that having the first two weeks done in an infusion center connected to a hospital might be a good idea.

      As of now I’m just waiting to see what happens.

    • October 31, 2013 at 2:26 am

      in what way was the emg abnormal? The needle emg- what did it show? was the Ncv normal? People with ALS don’t have elevated protein in their csf but with neuropathies they do of course. , plus if you don’t respond to IVIG alone there are other options – immunosuppresants, Plasma exchange/pheresis .. Do you have numnbess/tingling etc? My tests didnt’ fit with CIDP perfectly either, but apparently my symptoms, post viral and post partum onset etc, they did IVIG and the first treatment after the loading dose- 4 days later i was almost back to my old normal… now it’s on and off, but I’m hoping you have great success!

      Remember drink lots and lots of water before and after your infusions and tell them to watch the rate.. Go slow – if you have a history of migraines/headaches or are a female then watch the rate even closer those first few infusion.. Good luck, hope you get the IVIG set up soon- what a pain! Keep us updated!

    • October 31, 2013 at 9:35 am

      RE: She told me if my symptoms progress or I don’t respond to IVIg then she’ll change the diagnosis to ALS.

      Don’t think a diagnosis of ALS would be suggested in such an off-hand manner. She might suspect ALS, but once that diagnosis is given, it has to be 100% correct. ALS is fast progressing and you’ll know you have it if you have it. The weakness will be profound. I’ve had 5 neurologists… all visiting, as I live on an island in the middle of nowhere. ALS was explained to me in detail. I had all the symptoms and they got worse and worse the more I read about ALS on the internet.

      CIDP- IvIg works for me to a degree. I am at present syncing the IgIv intervals to head off relapse. Foot drop will never recover. Right hand function will be limited forever. Breathing is problematic. I have recovered many of my sensory functions, bladder functions and my body-riveting fassticulations are subsiding.

      good luck. Sstay off the ranting and rollicking medical forums dealing with neuropathy and ALS.

    • Anonymous
      November 2, 2013 at 4:12 am

      I’d make as many doctor appointments as necessary till I got in to see one that could authorize the IVIG. Don’t play around with any doc who isn’t sure what you have and tosses out ALS like it’s nothing. There’s a big difference between CIDP and ALS. Majority of insurance companies want a bonified diagnosis (testing, blood work, NCT) and you need a good neurologist to give you this.

      I love having my infusions at home. If at first you feel the need to have them done at a clinic than try that route.

    • November 14, 2013 at 2:03 pm

      I live in Minnesota and also have CIDP. I started with a neurologist at the Noran Neurological Clinic (Minneapolis). My neurologist did a great job at diagnosing my CIDP. My EMG and NCS showed moderate demyelination and my spinal tap was positive for the protein too. But all other tests were normal. She said since all my other tests ruled out other diseases such as MS, she diagnosed me with CIDP because of the results from my EMG, NCS and Spinal Tap. Also my symptoms came on about 10 days after I got the H1N1 vaccine so she also thought maybe the vaccine played a part in the CIDP. But once I was diagnosed I decided to start and see a specialist and looked at the U of M. It was a wait to get in and see the CIDP specialist at the UofM but once I got in he is a great doctor. I currently get IVIG at home every 21 to 28 days as I need it. I did try SubQ infusions at home administered by myself. I didn’t like them. I had to stick myself twice a week and each time I had to use 3 needles and they hurt to stick them into my tummy or thigh. It took almost as long to give the dose SQ as it took to get my IV dose. But I was constantly getting my infusion. So I tried it for a summer and went back to IV. I would revisit SQ again in the future if for some reason my veins went or I could get my dose down so I didn’t need so much of the drug. But for now, I like my nurse taking care of everything. I just have to sit there. The good thing about SQ is I could do it anytime and anywhere. I took it to work one day and stuck myself and wore it during my work day. I also liked to do it late at night after everyone was asleep. I didn’t have to give up a whole day anymore. IVIG has helped me immensely. I can tell that it helps because as I get close to my infusion date I start to get more annoying symptoms and feel worse. Then I get the IVIG and I feel better and symptoms subside for a few weeks.

    • Anonymous
      November 14, 2013 at 2:41 pm

      My appointment with the doctor at the U of M is next Wednesday. I’m really looking forward to what he has to say. I feel like my life is in limbo now. I did get copies of my records from Mayo for the doctor at the U of M and it was interesting reading.

      Here’s a snippet from the EMG & NCS:

      15-Oct-2013 Electromyography Final Report
      CLINICAL INTERPRETATION: There is electrophysiological evidence of 1) a disorder of the motor neurons or
      their axons involving the C5-T1 segments, 2) chronic right L4-L5 radiculopathies without any ongoing denervation, 3) length-dependent sensorimotor peripheral neuropathy, 4) moderate right median neuropathy at the wrist. There is no definite electrophysiological evidence of CIDP.

      The last sentence was very interesting. I’ve also had an MRI of the brachial plexus with and without contrast that was normal. The only thing pointing to CIDP is the elevated protein level found from the spinal tap.

      I’m still working but it is slowly becoming more difficult so I’m hoping to be able to get started on infusions soon. I’ve done all the paperwork and gotten my FMLA approved. It’s finally less than a week till my appointment.

    • GH
      November 14, 2013 at 5:11 pm

      The last sentence does not rule out CIDP. Extensive electrodiagnostic testing is sometimes required, and in difficult cases a nerve biopsy can help in diagnosis. According to Parry and Steinberg: “If multiple nerves and nerve segments are studied, the demyelinating nature of CIDP can be demonstrated in about 90 percent of cases.” Perhaps you should get a copy of their book: Guillain-Barré Syndrome.