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Many thanks from a new SCLS patient

DavidS Message
2 Mar 2019, 07:42 PM

Dear Arturo,

Thank you Arturo for setting up this resource and blazing the trail for us so many years ago!

After reading so many experiences here, we are thankful that my husband's most recent and worst episode did not require fasciotomies and we hope has not done much permanent damage to his organs and muscles.

His full story to date is in his profile.

He does tire more easily now. He's also experiencing muscle pain which he did before due to fibromyalgia.

Thanks to Dr. Druey's input our local immunologist has requested our insurance company to authorize ivig treatments. 

I wonder if because of all the excellent contributions in this community our insurance will recognize the treatment as the current standard of care, or if they will automatically reject it because of the cost?

I'm ready to appeal and do whatever we can to fight for Dave's life!

Many thanks to you all,

Rebekah S

Arielbatt Message
3 Mar 2019, 03:19 PM

Hello Rebecca, welcome to the community. Luckily he was quickly diagnosed, which is of great importance. Many of us did not have the same luck. Fatigue is a constant and takes months to get rid of. Another luck is that it is at 60 and not at 40 as most ... I try to help you to see the glass half full. The symptoms you mention are from a book for an SCLS, and as you have seen the vast majority of us are fine with IVIG. Is he currently interned?

DavidS Message
4 Mar 2019, 09:20 PM

Thanks Ariel, is your fatigue from your IVIG treatments or did you suffer fatigue before starting IVIG?

Yes, we are thankful for much. Things can always be worse, our imaginations can run wild with that! surprise

No, Dave is not incapacitated, in fact back to work full time 3 weeks after first signs of illness, 1 week after return from hospital.

With previous chronic illnesses he’s used to bulling through pain. Not one to sit in a chair if at all possible.

My heart goes out to you and so many others here who’ve had much more dramatic episodes in ICU and permanent disabilities.

DavidS Message
13 Mar 2019, 03:44 PM

Our insurance company denied doctor's request for ivigg treatment. And so it begins. frown

aporzeca Message
16 Mar 2019, 07:47 AM

Don't lose hope.  I'm going to help you file and win your appeal.  More details and resources emailed separately.

DavidS Message
16 Mar 2019, 10:52 AM

Thanks so much Arturo. Our immunologist resubmitted the request for authorization and I forwarded your documents to her.

Meanwhile I’m collecting hospital and doctors records that we need to apply for the NIH study.

This will take time and I’m very thankful that in case of another leak we’re not in the dark about what’s happening and how best to help him.

I’ll keep you updated on our progress.