Crushing Sensation? Teeth Pain?
AnonymousJanuary 18, 2014 at 4:16 am
Has anyone experienced a crushing sensation? My husband says there are times he wakes in the night because it feels like the blankets/covers are “crushing” him. Also when laying down whatever part of his body is touching the bed he feels crushed.
There has been a continually progression of worsening existing symptoms;
severe continual pain in – feet, legs, hip, ribs, arms, chest, hands, spine and head. Muscle weakness as well. Short of breath with any activity.
He has also lost 11 pounds since August as a result of poor appetite. His neurologist did question the possibility of MS in addition to CIDP. I myself question EVERYTHING!! I am not convinced my husband has the correct diagnosis. I will never stop researching and learning everything I can.
There was an M protein spike 2 years diagnosed as MGUS.
Honestly, I just needed to vent. It has been a challenging 3 years to say the least. Thanks for reading, much love to all.
January 18, 2014 at 5:14 am
On what is the diagnosis of CIDP based? Did he have the spinal fluid test? Did he have a nerve biopsy? Nerve conduction tests?
AnonymousJanuary 18, 2014 at 11:14 am
GH yes, he had a nerve conduction study, EMG, EEG, MRI’s, Many blood studies, Spinal tap was positive for protein, Bone density test, xrays. When I asked about a nerve biopsy the neurologist laughed, I was disheartened.
Maybe I’m in denial? From all of the research and studying I have done, my gut is telling me a piece to this puzzle is missing. He has symptoms that I have not found anyone else having. He is suffering 24/7 and I will never give up finding answers to help him.
January 18, 2014 at 3:14 pm
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.
AnonymousJanuary 18, 2014 at 5:13 pm
GH I totally agree he should be receiving treatment. Steroids were tried. IVIG caused the aseptic meningitis (prior post). When you currently don’t have insurance or a neurologist that supports plasma exchange you suffer, which I find unacceptable. Also, I find it quite insulting to my husband that once we no longer had insurance the neurologist went from seeing my husband every three months to “call me if you have questions”, let’s just kick him when he’s down. I have lost respect for the medical community and the “system” in general. This is our reality. My reason for posting is to try and compare my husbands symptoms with others. I see you had GBS and have had successful treatment. Congratulations! We have not been as fortunate.
January 18, 2014 at 8:32 pm
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.
AnonymousJanuary 18, 2014 at 8:56 pm
Thank you so much Jim for your response. I definitely will look into financial aid programs. I know the IVIG 3 day home infusion was over $30k. We live east of Syracuse, New York. The neurologist did recommended that Dennis go to a center of excellence and in the same breath said we would get the same answers. The 6 month wait for Social Security Disability to kick in depleted our savings. My husband worked very hard all his life and we were so looking forward to our empty nest and enjoying retirement. After his diagnosis it has been a struggle financially and emotionally. I pray everyday for him to find comfort somehow physically and emotionally. It’s his suffering that just seems so unfair. God Bless you all.
January 19, 2014 at 12:51 am
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?
January 19, 2014 at 12:52 am
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:
AnonymousJanuary 19, 2014 at 12:58 am
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.
January 19, 2014 at 1:12 am
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).
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