I reported on my Raynaud’s phenomenon while in hospital. I told them I had had it for about 10 years, but somehow it became 1 year and the 1 year error was repeated several times. Although I had been told Raynaud’s meant nothing, it surprised me to keep seeing it — why report on something that means nothing? Maybe my numb feet didn’t get reported because it didn’t have a cool sounding medical name to go with it.

My husband just called it the “white fingers of death”.

I have had Raynaud’s for at least 10 years. I had done a bit of reading about it to try to understand it. The first neurologist I saw in 2005 mentioned it in his report but he never asked me more about it.

I just found this website that describes a very important distinction between Primary and Secondary Raynaud’s Phenomenon.

Primary — no known cause

Secondary Raynaud’s – due to an underlying cause

In less than 1 in 10 cases, there is an underlying cause. This is called secondary Raynaud’s. Various conditions of blood vessels, joints, muscles, nerves or skin can cause secondary Raynaud’s. For example, scleroderma, rheumatoid arthritis, multiple sclerosis , systemic lupus erythematosus (SLE) and other ‘connective tissue’ diseases. . .

Often, the underlying condition is already present, and you may develop Raynaud’s as a complication. Sometimes the symptoms of Raynaud’s occur first, and other symptoms of the underlying condition develop weeks, months or even years later.

In secondary Raynaud’s, symptoms may first begin in just one or two fingers on one hand. This is in contrast to primary Raynaud’s when all fingers on both hands are typically affected.

On October 9, 2012, when I met with neurologist #3 to discuss my MRI — the one who told me that I didn’t have MS and that constipation had nothing to do with MS — he gave me the dismissive hand gesture when I mentioned Raynaud’s to him. How many clues do you have to give a neurologist before he will open his eyes and realize that he just could be wrong?

You probably can guess which type of Raynaud’s I had.