Crushing Sensation? Teeth Pain?

On what is the diagnosis of CIDP based? Did he have the spinal fluid test? Did he have a nerve biopsy? Nerve conduction tests?

The nerve biopsy is done when the diagnosis is inconclusive. With a positive spinal fluid test and EMG, it isn’t needed. If the diagnosis of CIDP is well supported, he should be receiving treatment for it — IvIg or plasma exchange, and steroids.

I had teeth pain, but I don’t recall a feeling of crushing. My weird sensation was I felt as though my legs and feet sank through the bed and was almost touching the floor.

Treatment costs for PE or SCIg are overly expensive and I think many of the inflated medical prices are due to corporate greed. I had a bill totaling $50K at one point that was not covered by insurance. I found the hospital had a special program for those with financial hardship and I applied. The bill dropped to a few hundred dollars and I made payments over time. I had a similar experience at another hospital and did not qualify for their financial aid program (I won’t use them for that reason). The criterion for financial hardship varies between hospitals.

What town do you live in? Have you looked into the financial aid programs available from your local hospitals? Have you received quotes for SCIg and PE? I have found that these costs are almost always negotiable.

Bonnie, I am classified as CIDP, although in some respects it is more similar to GBS than to typical CIDP.

The Affordable Care Act was intended to make insurance available to those with pre-existing conditions. Were you unable to find insurance which would cover his treatment?

PE is probably the most costly treatment because it is not available as a home treatment option.

IVIg can be administered at home for quite a bit less than if done at a hospital or infusion center. However, IVIg is still very costly and could trigger your husband’s Aseptic Meningitis.

SCIg is probably the least expensive treatment and can be administered by you or your husband at home. SCIg is also said to greatly reduce the risk of Aseptic Meningitis. CSL Behring who sells Hizentra, a version of SCIg, has a program called “CSL Behring Patient Assistance Program” where they sell the product at considerably reduced costs. Check it out here:
http://www.hizentra.com/about-scig-therapy/patient-frequently-asked-questions-answers.aspx

I don’t have CIDP, but GBS, diagnosed and treated November 2012-March 2013. I have a more mundane observation about the “crushing” sensation while I was hospitalized and was still experiencing symptoms of GBS, especially in my arms and hands. In the hospital setting where I was originally diagnosed and treated the nursing staff insisted on tucking me in like a child, right up to the neck with sheets and blankets, and I did not have sufficient control over my hands and arms to extricate myself from the blankets. It was pretty scary (do I look like Houdini?) and the subject of many a nursing call to get me out of this!!! By the time I was transferred to in-patient rehab the nursing staff got it, and I was no longer tucked in to the neck. There was a big sign put over my bed instructing the nursing staff to keep my arms and hands freed up. It worked, and so did the IVIG.

Additionally, I was in a high-end, brand-new Stryker bed, not a traditional hospital bed. It was the best bed I ever experienced; I was very fortunate. Wish I could have taken it home with me.

I too had the Stryker bed while in a hospital. It kept me moving when I couldn’t move myself and helped stop the bed sores from forming. I couldn’t afford to buy one when I finally got home some 6 months later, so I now sleep on an air mattress that I had my doctor prescribe for me (so my insurance would pay for it).