Auto-immune issues and paraneoplastic syndrome

ChrisNM

Hey all-

Not sure where to post this, so I'll start here.  (And if anyone can suggest another topic to post under, let me know!)

Long story short, following my first breast cancer in spring of 2008 I was diagnosed with sarcoid-like granulomas in my lymph nodes. I was a-symptomatic for sarcoidosis except for an unexplained need for oxygen at night (no apnea, but low oxygenation at night)

After my second primary breast cancer surgery in January of 2012, several auto-immune symproms came up (uveitis in both eyes, extreme fatigue, high sed rates) The diagnosis of the auto-immune disease sarcoidosis has pretty much been ruled out at present, but I have a firm diagnosis of birdshot chorioretinopathy ( a rare autoimmune disease of the eyes), and the uveitis specialist has asked about something called paraneoplastic syndrome.  Apparently this is an auto-immune problem related to having cancer in the body.  Is anyone here familiar with this syndrome?  She is wondering if that might be related to my oxygen problems. I can't find very much info about it.  I am heading to the onc today, and will ask him, but you all are my go-to gals for this kind of information.  Any info or resources anyone can poiint me to would be appreciated. Many thanks!

leggo

Hello Chris. I was diagnosed with paraneoplastic syndrome almost three years ago. Have you been tested to confirm the diagnosis? It will require a CV2 antibody test (a blood test).  I was pretty much dibiliated from this syndrome. First I lost feeling in my feet, then legs, arms, lost the ability to walk and eventually even lost the ability to stand.....I had absolutely no balance and would just fall over. When my eyesight got affected, FINALLY, a neurologist and nephrologist got together and decided they could do something about it. I received a series of plasma exchange treatments (the antibody lives in the plasma) until the amount was negligable. I'll probably never get my mobility back to where it used to be after having it for so long, but things improved after the plasma exchange. If I can help with any other info, please ask. I know how horrible it is. Best of luck with your onc today.

Edited to add: Forgot to mention that it also affected my blood pressure (it was all over the place), my urinary function and breathing. It was hard to get air sometimes. All these things went away completely after the plasma exchange.

ChrisNM

Wow- so helpful, Gracie1!  If we can test for it by a blood test, I may ask my rheumatologist for that test!

So far, apart from the shortness of breath issue and low oxygen at night, I am just so tired and have had an impossible time recovering from my sugery last January.  It has been a whole year of weariness.

Do you have any good information resources for this?

Thanks so much- and hope you are feeling well and dealing with the new normal for you.

Hugs-

Chris in NM

leggo

You are welcome Chris. Sorry I can't offer any concrete advice on the fatigue. I've tried several things suggested on these boards that were mostly hit and miss, mostly miss, so hopefully others will come along with some suggestions for you that can help in that area. Take care.

Wahju

Hi, Great to hear you have a great result from your plasma exhange therapy.

When did you start the PE (Plasma exhange)? was it after some months when the symptoms already advanced? such as unable to walk or stand?

How many PE did you have?  Did the Antibody went down after PE to nil? Was it tested using immunofluorescent tes?

I am carer of a PNS suffrerer, the clinical signs started in mid Feb 2013 but not diagnosed until 3rd week of May 2013.  And treatment was not started until last mont 2 July 2013.

Treatment was Methylprednisolone and IVig.  I had asked for PE earlier when PNS was suspected on MRI end of April 2013 but Dr does not think PE was the go.

The PNS was diagnosed when blood test was seroconvert positif to anti Yo in 3rd wk of May and yet treatment was delayed due to result of PET Scan being compromised due to surgery.

The treatment seems to have stabilised the neurological symptoms but not recovery.  Is still able to walk using a walking frame.  The oncologist does not think there is any uterine/ovarian cancer since removed in May 2011 but need repeat PET Scan in 3 months.

A second IVig treatment is due tomorrow hoping for an improvement further if possible.

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