I truly don’t spend a lot of time playing Google Doctor.
Not for the past year or so.
I used to search a lot more often for long periods of time. The lack of helpful information finally bored me.
Early this morning, I realized my claw-like posture in my right hand was back. I can’t stretch my right fingers apart
The mottled skin on my claw-like hand aka livedo reticularis
and can barely make a fist. My skin, only on the right hand, is severely mottled. I wanted to fall to my knees and scream. This is the hand problem I sought to get get rid of with the ACDF surgery.
Then I got angry with my body. Why are my problems transient? That has only made everything more challenging. I don’t know how long the problem will last, when it will go away, nor when it will return.
Yesterday, I read through my report from Doc B and Doc H. Livedo Reticularis (LR) was mentioned several times. LR is mottling of the skin. Mottled skin looks like ugly red and purple lacing of the skin. If you click on the link or do your own search you will get more information.
Somehow, today, I searched for mottled skin and it led me to a site about Sneddon’s Syndrome. What struck me about this syndrome was the symptom of “transient neurological problems“. Also medical professionals have been describing me as having transient neurological problems, I had never found an illness or disease with this as a symptom. Sneddon’s Syndrome also heavily involves blood flow and blood clotting, stroke, and more. It makes me curious because of problems with my sister – stroke and blood clot at young age. Several times, it’s been suspected I had a blood clot that never panned out but the medical professionals were always convinced there was one wherever they were searching.
I have no idea if this diagnosis is something that I should bring to the attention of my medical providers. However, I know there are many readers of this blog and this information may be helpful to someone else.
Best,
-Q
Filed under: Uncategorized Tagged: | Livedo Reticularis, mottled skin, mottling of skin, Sneddon's Syndrome, transient neurological problems
I think its worth mentioning.. I have been tested for things that seemed alot more far fetched.. at the encouragement of my Immunologist because she always says YOU NEVER KNOW.. something is wrong.. and it doesn’t hurt to rule everything out…
good luck.. I know your tired of all this.. but the answer is out there.. somewhere.. for both of us
Wow. I hope you’ll discuss it with your doctors and bring a printout of that FAQ to them since it sounds like it’s rare enough that even specialists like Dr. B might not recognize it without prompting.
Being on coumadin would suck, and the danger to your life if you’re in a car accident while on it is scary (to me. at least). But if it makes the difference between disability and being able to return to work fully, wouldn’t that be something? I don’t know all the potential risks/side effects to being on blood thinners, but wow — if Snedden’s is frequently diagnosed based on how patients react to being on the blood thinners, I’d be angsting for a trial in your situation.
And Q, I’m *so* sorry that it looks like the hand/arm symptoms aren’t improving post-op. *hugs*
i would sugest doing some more research on your own. Sneddon’s appears to be very rare, so many doctors may not know about or ever seen a case. Have you ever had your levideo rash biopsied?If not, andf you are going to get it done, I’d check the literature online to make sure they check for the right things. Another question – have you ever had your antiphospollipid antibody levels checked? This is a blood problem that is often associated with lupus and from my quick scan of the literature, it seems to play a role in Sneddon’s as well. Your primary doc could do this test. Among your MRIs, did you have one of the brain? This would show if you’ve had previous ischemic events. One medical article I looked at had a case study of a women whose neurological symptoms included dizziness, vomiting, ataxic walking and MUSCULAR DIBILITY OF LEFT LOWER EXTREMITIY. I think it is worth gathering some more information.
Sharon
dear queen,
i know you wanted to take a break from chasing the diagnosis train, but have you been tested for Hughes (antiphospholid) Syndrome? i think in addition to checking your antiphosophoipid antibodies, they also check your lupus anticoagulant level.
just a thought.
hugs,
m
I am dumbstruck. I have been dealing with this disease and related diseases for about 30 years. Only one specialsist had a clue but wouldnt tell me. A matter of time was the word. What is amazing now that I have been diagnosed, most doctors that I see have never heard of it and to be honest dont seem to care. My primary physcian didnt even research it but asked a few questions of his collegues. My psychologist had never heard of it either and didnt even research it except to say she found something called moyamoya on her reference computer. She was more than willing to take my money but wanted to know how she could help me. I have been called a hypochondriac by people I know and prescribed antidepressants, anti anxiety meds by former doctors because they just didnt know what to do. I could see it in their eyes after they got my previous history that i was some sort of cook or complainer. Even my hemotologist took just a few minutes to tell me what it was and then told me to look it up. So thats what I have been doing and dealing with. Do your own research, dont stop telling your doctor that somethings not right, bug the hell out of them or find a doctor that will listen and refer to the specialist.