odd non-itchy rash x

New diagnosis and before diagnosis
1

Hi All xxxx

I’ve been looking back & going over any acute/severe type problems I’ve had over the last 7 years. Most of the ones I have focussed on have (out of the context of MS) seemed bizzarre at the time - yet I ended up hospitalised & subsequently after routine type tests - sent home without explanation

However after looking at the various experiences of other peo- or most types of disorder that involves neurological or demyelating diseases x

One episode I can’t find much about though - there is always one eh!! This was an episode where my fatigue & some other symptoms eg my eyesight, worsened dramaticlly over a few days - I then came out in the ‘mother’ of all rashes! It was weird to watch it’s progression - It started on my bad leg, then crept all over my body - eventually it was in my eyes, ears, private parts - I was plastered in it basically!!

It looked exactly like urticaria - no small spots at all - no itching - no blistering - just these big red/purple wheals would appear - starting about the size of a 10p piece then they would get bigger & bigger before my eyes, then spread & merge into one!!

I literally was plastered head to toe when I went to my GP - he was pretty shocked at the severity of it and had me taken to hospital after a large amount of blood showed up in my urine test.

I was isolated & mmediately put on a saline and an antihistamine drip - this eased it very slightly - but really did nothing!

Altogether I was in isolation for 5 days until it eventually started to ease off - the Steroids they gave me on the 4th day actually finished it off in the end.

I was really ill for 3/4 weeks afterwards and it took a further month after that to recover - all this before going into an ON type episode with my eyes!

I never had a diagnoses - it was described at the time as ‘atypical’ - at no time did it itch in the slightest!!

I was not on medication/drugs etc at the time & any allergic reaction was ruled out - docs were totally puzzled.

I would say from start to finish I was ill for around 7 weeks altogether.

Has anyone else experienced/heard of this???

I wonder if this could be pointed to as a relapse? Should I mention it to the neuro??

Jen xxxxxxx

2

Sorry! I mean’t to say second paragraph “however after looking at the various experiences of other people on here it no longer seems unusual and fits with most types of disorder that involves neurological or demyelating diseases” xxxxxxx

Jen x

3

Hi again Kizzy,

Rash is not at all typical of an MS relapse. It’s certainly an odd thing to happen out-of-the-blue, but not suggestive of MS.

I’m always wary of saying any symptom’s “impossible” with MS, as there always seems to be the exception that proves the rule. Ultimately, everything’s controlled by the central nervous system, so I suppose, in theory, problems there could cause a rash - or anything! It just isn’t a classic manifestation, at all - I would have thought the explanation was far more likely to be something other than MS.

I’d certainly add it to your list of symptoms and mention it, as it could be a flare-up of some condition (whatever mystery thing you have). It just doesn’t sound particularly MS-like, if at all.

Could be an important clue. Some rheumatological conditions do present with skin symptoms - they are not just diseases of the joints. Lupus, for example, often has a hallmark “butterfly” rash across the nose and cheeks. But whole body would be pretty rare, I think.

Shove it on the list, and let the experts work out if it’s a red (no pun intended) herring or not.

Tina

4

Hi Jen It is surely worth mentioning to your Neuro, just in case he has come across something similar and it could be deemed a relapse. Btw, it sounds horrible, I’m glad it eventually went! Teresa xx

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Hi Anitra x

I know!!! - it’s not the norm is it!!

I’ve just found a couple of research sites though that pinpoint ‘non-itchy urticarial type rash’ as an autoimmune malfunction/disorder/reaction & they are looking at linking it to MS. Trouble is I can ony see the abstracts as you have to pay for the full text - when I get back into work hopefully the uni will have access to these xx 8/

I’m loathe to mention it to the neuro though - without any facts - I’m afraid to ‘cloud’ the main MS ‘typical/common’ symptoms I’ve been having xxx

6

I agree it sounds “auto-immune”, but not that it’s very likely to be linked to MS. I would certainly mention it, as it could be an indication you have one of the other 100 conditions my neuro said were possible MS lookalikes.

If you mention it, but he thinks it’s a complete coincidence, and nothing to do with the other symptoms, you won’t have lost anything.

But on the other hand, it might just be a crucial clue that points him in the right direction.

I certainly don’t censor anything I tell my neuro, just in case it might not be connected. He’s not bashful about telling me, if he thinks it’s unrelated - and in fact, I still have symptoms he and I disagree about.

He doesn’t think any of my joint pains are MS-related, but it makes no sense to me that I’ve got a sh*tty illness AND a load of otherwise unexplained pain, but he’s saying there’s no connection!

Either I’ve got something else nasty as well, or (more likely, to my mind), it all goes with the MS.

Tina

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Anitra I so feel for you xxx I haven’t had any problems with my joints x My friend has severe RA and it’s heartbreaking to watch when she has relapses x they actually misdiagnosed her with MS as a lot of her symptos & test results including her MRI actually ‘mimicked’ MS xxxxx

I won’t mention it to the neuro - but I’ll put it on my list of ‘other’ things!

Jen xx

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Heya.as others have said…make a mental note as you have and possibly menton it t the neuro…he may or may not think its MS linked but he may want to do some other tests too to rule it out…or if hes curious he may want to anyway…in any case someone else may say the same to him at another point…re the rash…and he wil have already had you metion it…so I think you have nothing to loose by telling him.

em

9

Hi Jen,

Thought I’d add my two pennyworth, I have RRMS, and also have SLE (Lupus), when the Lupus first presented it’s self my left hand swelled up. overnight, two weeks later my right hand swelled up, a couple of weeks later I had this awful rash appear on my right leg which had also swollen. The rash got bigger and bigger but lucky for me I was due to see my rhumatologist, he took some bloods, noticed my butterfly rash on my face, said the rash on my legs looked like Lupus.

Once he got the results back he confirmed I had SLE, I also suffered with terrible pains in my joints, at that time it was my shoulders, I would hang my arms over the edge of my bed and say please cut them off it hurt so much. Nobody did though and once on medication the pain subsided.

What I’m trying to say it it could be any number of things and only with certain tests will they discover exactly what caused your suffering.

I do hope you feel better soon, please let us know.

Janet x

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You need to tell your neuro about it - it could be a very important clue to what’s going on.

Karen x

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[quote=“Kizzydane”]

Hi All xxxx

  • no blistering - just these big red/purple wheals would appear - starting about the size of a 10p piece then they would get bigger & bigger before my eyes, then spread & merge into one!!

II was really ill for 3/4 weeks afterwards and it took a further month after that to recover - all this before going into an ON type episode with my eyes!

I [/quote]

Did you check images petechiae and Purpura? Petechiae is classical for Lupus and other auto immune diseases, and so is purprua, both can cover the body, and ON can be part of Lupus. The steroids would have sorted it out. My father had Lupus and Cryoglobulinemia, and would get Petechiae/Purpura many times all over his legs. Have a look at it on images google, it shows up in many forms but is usually red/purple wheals and not itchy.

Sounds like you have some autoimmune problem going on. I have never heard of anyone with Petechiae/Purpura as a result of MS. Mariax

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Hi Mturner & anon x

I have looked at the pis of purpura, petechiae and HSP and the rash I had was not really like that. It looked very much like the ‘hives’ images that come up in google. However mine did not itch - despite every inch of my whole body being covered by it - I have found something called Annular Erythema - this is a pretty perfect fit as there were no other ymptoms apart from the usual fatigue and I was on no medication etc!

Thank all for your input - I’ll definitely mention it to the neuro!

Jen x

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Thats good then. One point lot of people with Lymes get Annular Erythema. Glad it wasnt Petechiae or perpura to be honest. Hugs Mariax

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Hi Maria

I don’t know much about Lymes apart from what I’ve read on here. I have however been seeing a consultant haemotologist for over 18 months due to chronically high WBC - I have been having regular 3-4 weekly blood tests to rule all sorts of things out! .

Would she not have done a test for Lymes?? it has never been mentioned by her - but there again she didn’t list anything else they were ruling out either - I presumed they would do the obvious?? Is it something they would routinely check for in the UK when someone is presenting with some of the obvious symptoms??

Jen x

15

Have you looked at Hughs Syndrome? This can cause skin rashes, and mimics MS. Just a thought!

http://www.hughes-syndrome.org/symptoms.htm

Go down the page to ‘skin disorders’

The rash looks similar to what you are discribing.

16

Hi Jen no they dont test for Lymes routinely, and to be honest unless one actually goes to a LYME LITERATE doctor because unless they do the right bloods for Lymes people are being told they are negative when they are positive. A friend of mine had the Lymes test by the GP and was told it was negative. Anyway she didnt get better and then went to the Breakspeare Medical group and they did the proper blood tests for her and found she was positive for Lymes.

You would think they do Hughes syndrome but they dont. I would be checked for that too.

Hugs Mariax