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A strange case
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
Have you seen an immunologist and neurologist?
Having dealt with autoimmune issues for years, this sounds to me like you had an immune response to that cortisone shot you had originally.
The rash you describe sounds like something you’d see when suffering from DRESS syndrome. This can start after taking one of over 50 different medications. I’ve heard of it, but have not researched.
I hope you find answers and get relief soon.
Hugs,
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1 Reaction@dlydailyhope I have a neurologist and my neurologist now specializes in ms. I have also seen a neurologist who specialized in Clinical Neurophysiology.
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1 Reaction@sondrachristo1 I said that to the doctors here and they told me that wasnt possible and focused on that I had a bad upper respiratory infection. Then put me on high doses of the cortisone to treat it which did horrible things to my body.
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2 Reactions@catken0701 it’s hard to get a doctor to admit that a treatment is the cause of any side effects a person is dealing with.
It’s good you are going to see a rheumatologist, at least from an immune system perspective.
Cortisone works to reduce inflammation by turning down your immune system, possibly leading to other conditions.
You are young, but have you ever been very sick at any time, prior to the respiratory infection you had before this all started?
Have the doctors run a test to see if there are any antibodies, an ANA screening. That’s how they found my Epstein Barr virus back when I was 32.
Has continued to cause me issues for over 30 years!
Sometimes it’s hard to find the root cause, stay the course!
Hugs,
@sondrachristo1 I had cpvid 2 times in 2021 but other then that not really. I started going to the dr in 2023 bc I gained 60 lbs in 3 months and that ws very uncommon for me. The only thing that I have ever had an issue with is I break bones easily and have really bad ankles and knees. They tested ana as well as the rest of all auto immune in the spinal tap and compared it to the blood all of them wete negative.
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1 Reaction@catken0701 you have had to endure so much already, I’m sorry you’ve had to go through all this.
Has any doctor given you a reason why you break bones so easily? And how about the weight gain? That’s quite a bit in a short period of time.
Still sounds immune system related, maybe thyroid or parathyroid, and having Covid may well have triggered an immune response that wasn’t intended.
Have you taken any meds other than the cortisone for any of your prior issues?
Hopefully the rheumatologist you see will be able to figure this out.
Autoimmune issues are very complex, I know, it’s all about controlling the inflammation, easier said than done sometimes.
@catken0701 Welcome to Connect. I have also had a bad reaction to a steroid spinal injection. I think it was an allergic reaction to polyethylene glycol that was likely an ingredient in the injection. I have had another instance of chronic hives after breaking my ankle and receiving titanium plates. I had them removed and that cleared up. I am also a spine surgery patient and elected a single level fusion without hardware.
I have also at one time had weird patches of goose bumps on my legs. I think it was due to a bulging spinal disc in lumbar. I had had a whiplash and that area would crack if I twisted. I did at times have some sciatic pain. That was early on. Eventually, I developed spinal cord compression in my neck and had a fusion of C5/C6. I haven’t had that weird goosebumps rash in years.
I’m not sure exactly what you are describing in your spine. Do you have either spinal cord compression or compression of spinal nerve roots? Did the immune issues derail consideration of structural spinal issues?
@sondrachristo1 they said it was bc i was lactose intolerant for most of my younger years and my calcium and vit d is very low. Always has been. I also have alpha gal syndrome so I cant eat red meat. I was bitten by a lone star tick 10 years ago now. So my iron is always low as well as my protein. Then one day my sugar started to spike all the time and they said I was pre diabetic they said hormone changes at my age can do this. They did a hormone panel and everything came back of that of basically a 20 something year old. I drastically changed my diet and started working out daily. Being in a boot cast for part of every year probably didnt help the Weight gain either. Other then broken bones I never went to the doctors.
@jenniferhunter I dont have a spinal cord compression or fracture. I have a spinal lesion in my spinal cord itself. The avm as it was explained to me is a tumor or cluster that you are normally born with of blood vessels . And my cortisone injection was in my right foot not my spine. Normally they would think this is the start of ms but now with the other symptoms I just keep getting called a peculiar case and everyone wants to poke me.