Newly Diagnosed

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: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2817783

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

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!

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.

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.

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.

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.