7 months into ordeal where combo of PMR!GCA, vasculitis , neuropathy, and scleroderma symptoms occur

7 months into ordeal where combo of PMR!GCA, vasculitis , neuropathy, and scleroderma symptoms occur

My symptoms began sometime in 2014 as I felt increasingly worse and thought I might have cancer again (had lymphoma in 2012 and six chemo cured). As I became weaker with pain and balance issues along with chest pain, low potassium and sodium (found in routine blood tests as monitoring for cancer) and lung issues.

As first crisis hit in early January, thank goodness for research as I recognized the GCA symptoms and went to ER where I could read only top line of eye chart. Doc put me on 40 mg of prednisone and did tests where ESR not much up but CRP was. And symptoms of pain in hips,shoulders eased for a bit only to return as more. Widespread pain and tapering of prednisone slowly with first visit to rheumatologist in June. Much of symptoms like leg pain, neuropathy, face feeling tight, lungs congestion, dry eyes and mouth, stomach swelling and hurting especially after eating--I figured these were related to steroids and the PMR but first blood tests show positive ANA with speckled pattern...more likely scleroderma or lupus.

More blood tests done and to learn more in August 6th visit to rheumatologist. Meantime, had electromyography testing done and went through month of therapy with exercises and electrical stimulation using rebuilder that seemed to help with neuropathy. Now it's like I have on thin booties instead of thick ones and my balance s better. My strength and breathing is still awful as the least bit of exertion has me huffing and puffing! I hope to have some more answers by next month ths time so I just keep on being as active and positive as I can.

4 Replies

  • You do seem to have pulled the short straw there - that is some catalogue of ills! Welcome - and I do hope we can offer some help of some sort. At least there are a lot of listening ears here but not too many with lupus or scleroderma.

    All the very best for your rheumy visit - hope he has some answers.

  • Thank you and I am hoping for many answers within the next few months as I retire in 2016 ( lucky enough and blessed to have compassionate company letting me work from home til then).

    Insurance will change a lot so getting all these tests done now is best plus I just want to know!

  • Sharon. What a lovely garden you have.

  • Thank you, while it wears my hiney out In just a few minutes, I do a little, rest a lot and do little more.

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