Howdy folks!

When dealing with my recent MS relapse, and still on steroids for that matter, I developed a HUGE outbreak of red, raised, hard bumps on my legs, from the knees down to the feet themselves. They were super painful, and for 3 weeks I was virtually unable to walk. The pain was obscene, swelling caused my ankles/feet to swell so badly I couldn't put on my shoes (had to wear my sandals, still painful, and not going to work in the Winter!).

So the E.N. is finally fading away, the spots that had been super inflamed are now dry to flaky skin.

I was sent for blood work, and I thought when I went "Hey, this is good, now they'll find something that explains why I have these spots!".

Wrong! Blood work came back 100% good, no inflammatory process could be detected.

Sigh... in another limbo. Has anyone else developed E.N.? I've found some folks on social media who have this (or had it at one time). Not pleasant!

(my first encounter with E.N. was mid-August of this year, and it was quite mild in comparison with the latest outbreak, which was unbearable)

I wanted to post on this board, as E.N. is completely (to my knowledge) unrelated with MS. It's a flare up, relapsing/remitting skin condition with an underlying cause (although a lot of people can never pin down what's causing it). New to me, I hope none of you have 'experienced' this, but if you have I'd greatly appreciate hearing your feedback/input. My GP had literally no advice to give about managing the condition.

Still waiting on a rheumy appointment...

Good Lord Laura, no, never heard of it. Are you sure it wasn't a reation to meds? Soumds like an allergy or something like that..

Sorry to hear about this, Laura. Like you needed another ...something!

Sally, it looks like it can be a delayed reaction to drugs among many other reasons.

ANN

I had a very severe reaction to a chemo drug 4 weeks ago that sounds similar.

My hands, arms, feet, and legs turned an angry purple red, numb, burning, stinging, swilled beyond belief. I had to have my rings cut off. Then it all turned bright red and blistered under the skin. Started to peel, still is.

Extremely painful, 5 days of steroids and that was it. Med onc called it hand foot syndrome, but it went way beyond that.

Chemo has been stopped until after surgery, he doesn't want me to have more. Depends if the surgeon gets all the cancer.

So yes, I fully understand this pain. I hope neither of us ever get it again.

I forgot to post the link yesterday:

http://www.hopkinsmedicine.org/healt...sum_85,P00283/

ANN

Almost sounds like cellulitis...

Think I might be able to give you an insight into this very painful condition. About 25 years ago my wife had a difficult pregnancy and was very run down. The swellings and pain she took in her lower legs below knee immobilised her.

A medical consultant visited the home from local hospital, after thorough medical he diagnosed E.U.

The basis for condition was a streptococcus infection and could develope to a serious level if not treated urgently with strong antibiotics.

My wife took a few months to start to return to normal. The doctors where dx ing M E as a result but thankfully she has never had a relapse.

Possibly you have overdone it or the MS has left you open to infection and become very run down.

Lets hope you never have it again.

Thank you for the feedback folks, I really appreciate it

This started up in August this year (mid month), came and went, then came back ironically while I was taking prednisone for my MS relapse (I say ironically, as they treat E.N. with steroids).

Having developed it in August, before the relapse, I have a few things to consider:

- I was entering a relapse, but didn't know it when I got this condition. I developed this, and hubby broke out in shingles a week or so later. He's a type 1 diabetic, so a bout of shingles didn't really surprise me (my gosh they look so so very painful, he had it on his right leg from knee up, no pattern or row of spots like I would expect to see with shingles, just a lot of bumps all over his thigh). A dermatologist at the ER diagnosed shingles (the first doctor he saw had a suspicion of shingles, but couldn't say for sure, and suggested we head to the hospital to see the derma instead of waiting on a referral that could take ages).
So we were both pretty run down. Been a tough year for the 2 of us, getting our eggs in order, so to speak, and he moved over 3,000 miles to be with me. This climate is completely foreign to him being from Florida (we live in Eastern Canada).
- I was still taking Topiramate. This medication messed me up so horribly, and did nothing to help. I had side effects like cloudy urine, being unable to find the words for things, stopping mid-sentence and forgetting what I had been talking about... I can't even recall all the bad this med did, but egads. I'll never take it again.

I got off the topiramate and the cloudy urine cleared up (thank goodness). My mind is still 'healing' from the medication (slowly the cognitive function is returning).

What I don't 'get' is that the second round of E.N. was so very severe compared with the first. Other than perhaps it was allowed to flourish as I was in relapse, and on steroids... no doubt my immune system was a mess.

It's definitely E.N. I had thought Cellulitis initially, however I was ultimately diagnosed with E.N. He said the diagnosis was easy, due to the relapsing/remitting of it, the lumps under the skin that bruised after being extremely painful, and then are taking their sweet time fading away, plus my skin at each spot is going through a peeling flaky skin phase.

I'm being sent to the rheumy now as my ankles both swelled. The left one very badly.

I had blood work taken to check for inflammation, among many other things. I'm unsure if strep is involved somehow. While I had my fill of steroids, I've not been on an antibiotic recently. Nor has a doctor suggested strep as a possible cause.

I guess we'll see if this creeping crud stays away, and what the rheumy has to say about all this. I have a feeling that I do in fact have a skin condition that's an inflammatory process. Or multiple skin conditions, mouth ulcers, geographic tongue, fissured tongue, problems with the eyes (often the whites turning bloodshot, which can be attributed to something else completely). Any of these could be 'on their own' away from a group 'syndrome' or 'disease', however I have a pretty good idea what to rule out first with the rheumy - Behçets. While it's very very unlikely I have this, as it's so rare in this part of the world, it's too coincidental that for years I've wondered if I have this, and then developing the E.N. was a huge red flag getting me to a doctor for a referral finally.

Bedtime, thanks for letting me vent and for the kind words, you guys rock!

Just an update.. no rheumy yet, GP (who I saw again since my last post) has nothing to recommend to 'treat' the E.N. It's in remission at present, however under several bumps, even those that are older, there's a "hardness" (like a permanent, non-painful bump to remind me of how brutal the big outbreak was).

I have more blood testing to go for. E.N. can be a sign of kidney, liver, or other organ failure as well. So, they're doing a thorough look through blood tests again. Joy!

I've yet to recover my mind from being on Topiramate. Even at times, the urine is still cloudy from that crap. Speaking of headache/migraine prevention (which is why I was taking Topiramate to start), I had a dreadful bout of pain on my left side of the head, all around my left eye, and my skull/cheeks felt like they were crawling. Not good!

Topiramate MAY be the culprit (thank you for the mention of post-medication or delayed reaction to medication - you could very much be correct, as I started to ween off it in September at the same time that I was taking prednisone). It could be that my body got super angry at me for stopping Topiramate, and thus the E.N. break out. I did get 2 more bumps on the back of my right leg, and I am still waking up every morning pretty much with sore ankles and swollen aching feet. I've had to give up my morning walks due to the pain and swelling I wake up to. It totally sucks, walking keeps me sane!

Ah well, when I find out more, I'll report back. I'm at a standstill now. I'm back to working half days. I get so drained and it's overwhelming to me (the work at times). I really noticed the fatigue big time since September. My mind's still messed up from the Topiramate. Or is it the MS? I can't multitask like I used to. I get distracted and completely forget what it was that I was saying. I can't carry on a convo with the hubby while I'm prepping supper. I'll start to talk, but I'm trying to also focus on not cutting myself (!) that I completely forget words, or what I was in the middle of talking about.

Hope everyone's been great around these parts.