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A strange case: long health journey, now livedo reticularis
I am 38 year old female. I smoke but no drinking. I didnt take any medications before this all started, not even Tylenol.
I was sick thanksgiving 2024 with a upper respirtory infection. I received a cortisone shot in my right foot for planter fasciitis. I had a bad reaction to it. My leg up to my knee tirned bright red and swelled, i also had a bubble form at the bottom of my foot.
I woke up the day after christmas 2024 numb, I guess you could say from the belly button down. I could still walk through. I lost bladder control. This resulted in er trip #1.
I sat inthe er for 6 hours to get an iv placed for an mri with contrast. I had to wait for the mri with appointments to go first. The mri tech decided I didnt need contrast because he was supposed to be off shift already.
5 days later the leg pain started. I felt like I was being electrocuted. I went to er #2. They did mri with and with out contrast. I had a lesion t9 to t12 and what they called a spinal avm.
They sent me to a bigger hospital. Mra was inconclusive on the avm but defiantly had a spinal lesion on the poster side of my spinal cord that reached to the 50% marker and was a triangle shape. All my blood work was fine other then vit d was low. So spinal tap it was. Everything was normal and within range other then oligoclonal bands 2 high. Started steriods. Started to work the scheduled an angiogram. The dr had some issues getting into the t11 area but said he couldn't find anything anywhere else.
Closes and put the bandage on my leg and I experienced an allergic reaction to it. It literally burned me. They sent me home and as I weaned off the steriods the numbness and pain came back. They tried another dose of it and nothing changed other then I become severely depressed.
I taught myself to walk and do other things because pt and ot were useless. I have to see my legs to make them work.
Fast forward 7 months and I developed livedo reticularis on my legs that spread to my chest and arms and some on my face. It started from around where the incision from the angiogram was.
A month later the next mri scans cleared my lesion.
2 months later I developed a strange rash from head to toe that wont go away that literally looks like goosebumps. I am now on a regiment of benedryl, antihistamines, pepcid, and carry an epipen and still am battling the hives every day.
Waiting on rheumatologist which I cant get into until january and vascular which is in December for more tests.
Anyone else have anything like this? And yes it is true livedo reticularis it does not go away for heat or for the cold.
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@catken0701 now I get it, I’ve never heard of the lone star tic so I did some quick research. Apparently it’s pretty common to be diagnosed with alpha gal syndrome after being bitten by this tic. That and a whole host of other viral illnesses. No wonder you’ve been so sick.
You definitely did the right thing by improving your diet and exercising.
I stay clear of all processed food myself, and definitely no alcohol. Limit sugar too.
I wouldn’t be surprised if all you are going through is due to this bite you got 10 years ago.
As far as the lactose intolerance and brittle bones, have you started any treatment to build your bone density? I have osteoporosis and have been dealing with the ramifications of that for several years. But that’s a story for another day.
I hope you can find a doctor that is knowledgeable or willing to educate themselves on your specific case.
@catken0701 Thanks for explaining. I can understand why extra attention isn’t always welcome. Does this affect the functionality of the spinal cord?
Hello, Im 55 y/o female who develop what it seems like livedo reticularis, based on pictures i found on-line and AI suggestions. Started about two years ago. I attribute it to covid symptoms I had before. While Im trying to keep my feet worm, stay hydrated and move around/exercise, patches dont go away completely, sometimes they getting lighter only to come back spreading even more., mostly on my legs, arms. Did multiple blood tests, biopsy., seen by dermatologist, oncologist, functional medicine doctors. Most had no idea what that was, others cant offer any treatment or dont even know to whom I can be referred to. Getting very frustrated because I live near major health centers in Philadelphia. Does anyone maybe knows a specialist in this particular area/ Maybe had successful treatment plan? Any advice would be great, thanks!
Hello @iglana,
I combined your discussion with an existing discussion titled:
"A strange case: long health journey, now livedo reticularis"
- https://connect.mayoclinic.org/discussion/a-strange-case/
Here you can meet @catken0701 who shared a similar situation as yours.
You may also find this information from Mayo Clinic useful as well:
"Livedo reticularis: When is it a concern?"
- https://www.mayoclinic.org/diseases-conditions/vasculitis/expert-answers/livedo-reticularis/faq-20057864
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2 Reactions@catken0701
I read into this thread because I am experiencing a whole body (except lower leg) rash that I think might be mites but doctors are stymied. I read your post above and for a minute I thought I had already posted. Except for the broken bones, it sounded like my medical history - tick bite, no red meat, exercise daily, lactose intolerant (now gluten sensitive too), sugar numbers weird (high when fasting, normal after eating). I have no IgA.
Good luck in your health journey. I will follow this thread and let you know if I learn anything new.