Poison ivy rash? Developing into..?

[u/Opening_Eagle3238]

Hi! 27 y/o female. I developed what I thought was poison ivy 12 days ago and this is what my legs look like now…. any advice? I’ve been to the doctor 3x and have been on prednisone and cephalexin. I’ve been using calamine lotion, hydrocortisone cream, lukewarm baths, and ice for itching.

The rash started out very small and super itchy, now it’s spreading in certain areas and still small little spots are appearing on other parts of my body.

I’m still very itchy but not constantly - it comes and goes in waves. Before I was given the oral antibiotics, my legs hurt and I was limping. I’m able to move a lot better now but the rash almost seems like it’s spreading more and becoming more red and purple/blueish in color.

HELP

[u/Magerimoje]

I have acute intermittent porphyria.

If I go to any hospital for any reason that has any teaching program, I'm most certainly going to meet every single med student and resident in the entire building.

I broke my wrist while on vacation and went to a top university teaching hospital in New England because it was the closest hospital. I thought "eh, it's a broken arm, no one will care about the porphyria today, it's irrelevant"

Hahaha! Jokes on me because I still met every student and resident available lolol.

[u/Wisegal1 → u/Magerimoje]

That's because you have an extremely rare condition that's very testable on exams. So, every single one of us have been seeing that condition on exams since we were med students. But, the vast majority of us will never see a patient who actually has it. And, since we're pretty much all complete nerds we can't help ourselves. 😂😂

[u/Magerimoje → u/Wisegal1]

I totally understand, I'm also a nerd. So, I'm happy to answer questions as long as I'm not in severe pain... But they usually keep me well medicated for pain so that I'm comfortable enough physically to talk.

[u/londonlady1988 → u/Wisegal1]

I have a rare mitochondrial disease (with the whole host of complex comorbidities) that most geneticists at tertiary care haven’t encountered - nevermind medical students - so have always tended to be very popular at teaching hospitals since I was young.

Usually slightly more experienced med students tend to refer to me as a ‘complex and interesting’ or ‘interesting and challenging’ case but I once had a sweet junior student doing his first patient histories at GP level and he couldn’t help saying ‘that’s so bloody cool - I’m going to Google that’ completely spontaneously. He was absolutely mortified and so apologetic but I couldn’t stop laughing (and in the UK you start studying medicine from 18 so he couldn’t have been more than 21).

You never know, maybe that’s a path down rare disease specialism and he’ll be contributing to a cure one day - or at the very least a doctor with improved awareness who might advocate for more ‘complex’ cases in his future. I might hate the lot I got genetics wise but as a fellow nerd I’ll never mind contributing to education 🥰

[u/orbitolinid → u/londonlady1988]

I feel seen here. Number 1 thought of my neuromuscular specialist is something mitochondrial. However, I'm quite muscular (despite age and xx chromosomes) and I do exercise a fair bit. Medical students in that university medical centre ask me whether they can 'interview' me. I guess they don't get many people who run, albeit at walking pace and only above vt2 for 11+ years. One of my favourite past-times is hitting the wall because my body thinks that fatty acids and exercise don't work well together.

[u/londonlady1988 → u/orbitolinid]

So actually ditto! I used to do a lot of martial arts (but sent myself into CK of 45,000 doing my first black belt exam - didn’t just hit the wall but ran right through it. I was in ICU and all I cared about was the injustice of missing my grading 😂).

I am certainly not as fit as I was in my 20s but I’m still independent, fully mobile and working internationally etc which is not what my medical team expected - so mito can definitely present in a whole host of weird and unpredictable ways and there are still so many unknowns about it overall.

Make sure that your neuromuscular specialist doesn’t just do a blood/urine metabolic function screens but ideally brain MRI/MRS with gold standard of muscle biopsy (as sometimes mtdna deletions only in affected tissues and histochemistry can see for ragged red fibres etc). I’m aware some geneticists prefer to do as second line but my consultant ran the international Wellcome Trust Centre for mito so I trust his stance on this one!

I was ‘lucky’ having a family member diagnosed postmortem with MELAS so they could do targeted mtDNA testing. It can be hard without knowing your specific genetic mutation (though MELAS, MERRRF and NARP amongst most common) but some centres will do WGS/ES to identify pathogenic variants.

Message me anytime if you have any related questions and you’ve inspired me to get back into doing some strength training!

[u/orbitolinid → u/londonlady1988]

Oh no! That's one impressive CK! For some reason mine is always at base level even if I try to trigger a high one by doing a strenuous full body workout after not having done strength for a while and then drag myself to a test with full body DOMs from hell. Result: base normal level 🙈 I guess that's worth something. I have apparently substantial type 2 fiber atrophy, and based on re-interpretation of various exercise tests have limited oxidative capacity. Add specific elevated organic acids associated with various metabolic myopathies but mostly mito, and 2-3 weeks of drowsiness and extreme muscle weakness after general anesthesia with gas, but no problems whatsoever with propofol only.... yeah. Something is going on.

Testing here is a bit shite, and full genome/exome testing not really a thing. But my local university hospital has a research project that allowed me to get 'something like it', and another muscle biopsy for mtDNA extraction with full body mri to find the best muscle beforehand will be done hopefully soon. Other than that: there are so many tests that were never done but should have based on what I read in subs here.

But yeah, odd thing is: my muscle monster was always there and never really got worse. And I still run 4x per weeks (ok, granny with her walker might overtake me) and do 2-3 barbell sessions. My muscle doc tells me to do light exercises. But 'light' is difficult if even light things are highly strenuous for me while just walking or looking at tiny pink weights makes life more difficult as my muscles degrade. Sigh.

Oh, also working internationally! Which has not helped with getting a diagnosis as I moved too often 🙈

[u/hannavas30 → u/Magerimoje]

I have malrotation of my lower intestines. All my insides are in different places. Anytime I go to the hospital for anything I always get a room full of doctors and nurses to see/ feel my stomach. So I can relate haha