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New - Idiopathic Hypersomnia & Possible CREST

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Well, I'm convinced now I'm going to be found negative for any autoimmune disease, even though I am the infection queen.


I'm going to focus on trying to get something for the CFS and arthritis.


I really want prednisone 5mg for two months and plaquenil.


As far as the calcium goes, I'll have my phosphorus checked out. Maybe, there's an imbalance there.


I'm throwing my hands up.


Now that I take medication for narcolepsy, I'm more awake.


I just need my physical fatique and weakness treated. Then, I'll try to get on with my life.


I'm so sick of doctors and no one knowing why I feel this way. I'm totally over it. Way, way, way over it.


I just hope the calcium doesn't come back to bite me later, if that's what it is.

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Hi Michele,


Sounds like a pretty common appointment scenario, unfortunately. I guess the only thing I can think of is to get complete copies of ALL your records from ALL the doctors you've seen, including any places like hospitals and urgent care centers. There might be something in there that will enable someone to feel comfortable in making a diagnosis. Reading the records yourself, first, then making a copy and highlighting anything that you think is especially pertinent would be helpful. Tip: never hand over the copies you have gotten. They'll be the clearest and most legible ones. Make copies from them and then mark-up or pass on those second-generation copies.


I know you are frustrated to the maximum, but hang in there.

Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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I'm going back to the surgeon that removed the "unknown white thing" from my shoulder.


If he didn't do a pathology report then I'm going to get him to consider whether or not it was calcium.


I'm so aggrevated.


I may be able to get plaquenil for my current FMS and CFS dxs. But, if I do have a calcium problem, I do not want it to go untreated.


There's the medical help that I want. Plus, I thought getting a disabled parking placard in NYC might be easier with a CREST diagnosis.


We can treat any medical problems I have that we can find independent of a formal diagnosis, but I need that parking placard to function properly.


CFS, FMS, 6 buldging/herniated discs and Raynaud's is not enough for the parking placard. I need the placard because of my physical fatigue. I have to walk 8 blocks to where I park my car as it stands and it's killing me. Public transportation is killing me, too.



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Hello Michele


Should you find out you do have calcinosis you may find it helpful to look at the information we have on site about calcinosis. Unfortunately there is no real treatment for it, it's more a case of managing it and should you have to there are many here who would be able to give you the benefit of their experience.


Take care.

Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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