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rwgiroux
@rwgiroux

Posts: 2
Joined: Apr 13, 2017

CISP Chronic Immune Sensory Polyradiopathy

Posted by @rwgiroux, Apr 13, 2017

Has anyone out there been diagnosed with this?

REPLY

Hello @rwgiroux, welcome to Connect. I’m glad you found us. I have not been diagnosed with chronic immune sensory polyradiopathy (CISP) but I do have two immune system diseases – polymyalgia rheumatica and idiopathic small fiber peripheral neuropathy. Are you able to share a little bit more about yourself and how you were diagnosed? It may help identify others with a similar diagnosis who can respond to your question.

I did find some information on CISP on the National Institute of Health website: https://www.ncbi.nlm.nih.gov/pubmed/15534252

I also did a quick search on Google Scholar – https://scholar.google.com/ (my favorite search engine for medical and other technical information) and found an article “Two cases of chronic immune sensorimotor polyradiculopathy: Expanding the spectrum of chronic immune polyradiculopathies” –
http://onlinelibrary.wiley.com/doi/10.1002/mus.25360/full.

John

I’d like to add my welcome, too @rwgiroux.

I’d sincerely encourage you to view the resources that @johnbishop mentions. The Peripheral Nerve Research Laboratory at Mayo Clinic has been conducting studies on peripheral nerve and its diseases for the last 40 years; here are details, if you would like to know more:

@rwgiroux, what are the symptoms that led to the diagnosis of CISP?

Thanks @johnbishop and @kanaazpereira. I will have a look at the articles. The effect of this condition is that for many years, I could not feel my legs or feet. This creates walking and balance issues. I was referred by my local physician to the Mayo, After a battery of tests, Christopher Klein provided a diagnosis. I am receiving IVIG and things have improved. For many years, my company’s health insurance paid the bill. Now that I am retired, the issue I am facing at this time is getting Medicare to pay for the nurses who need to come out and administer my treatment. Medicare Part D will pay for the medication ( although my portion is still a large expense) but for some reason, Medicare doesn’t want to pay for the nurses. It is not a medication that you can administer yourself. I continue to explore options. I was hoping that someone out there had been through this and has Medicare tips.

@rwgiroux

Thanks @johnbishop and @kanaazpereira. I will have a look at the articles. The effect of this condition is that for many years, I could not feel my legs or feet. This creates walking and balance issues. I was referred by my local physician to the Mayo, After a battery of tests, Christopher Klein provided a diagnosis. I am receiving IVIG and things have improved. For many years, my company’s health insurance paid the bill. Now that I am retired, the issue I am facing at this time is getting Medicare to pay for the nurses who need to come out and administer my treatment. Medicare Part D will pay for the medication ( although my portion is still a large expense) but for some reason, Medicare doesn’t want to pay for the nurses. It is not a medication that you can administer yourself. I continue to explore options. I was hoping that someone out there had been through this and has Medicare tips.

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Thanks for sharing some more information. Sorry to hear Medicare is not stepping up to the plate on the treatment. It doesn’t seem logical that they would pay for a treatment but not cover the cost to administer the treatment when the patient can’t administer it themselves. Hopefully others that are receiving IVIG and are on Medicare can shed some additional light and offer some tips for you.

John

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