Anyone w/ Linguinal Raynards Phenomenon Syndrome ?

Posted by internallyfrozen00 @internallyfrozen00, Feb 28 5:35pm

I'm desperately seeking a Neurologist that know about it , how severe can damage be, and treatment options. This affects my tounge(excruciating white), up nasal canals as if ice pick pushing into brain and over eye down around ear. Then to jaw. This started as little episodes but are now full blown events. Plus, I also have Raynards in my toes,feet,fingers, arms. Instantly White and excruciating pain. Not counting the cracks on fingertips no matter what I do. And some toes are turning blackish.
Now here's the kicker... I have addressed with P/C as well as Neurologist with both giving me the answer of "I've never heard of Linguinal Raynards."...
And that's it!! Not even acknowledgement of its existence on my extremities.. any help/ advice is greatly needed.. Because
"I AM INTERNALLY FROZEN"

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jerce | @jerce | Mar 1 7:22am

I am so sorry to learn of your suffering. It may be that a rheumatologist can help you. I am just about to google Raynaud’s and the heart. I had never heard of it until my rheumatologist mentioned it.

Avoiding sores on fingers is one aspect of managing one of the several aspects of scleroderma. On a partially healed split on one finger, I bandage that with Aquaphor ointment every night at bedtime .When I am good, I use the ointment on all of my fingers and cover the hands with old leather gloves.