Polymorphous light eruption - anybody else?

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Polymorphous light eruption - anybody else?

Postby jr5646 » Sat Apr 17, 2010 7:50 pm

Just curious if anybody else with MS has this?? I never really had this until my DX... just weird I suppose! I ony get it on the top of forearms and top of hands where sun exposure is.. Itchy as hell, too... Wondering if their is some sort of MS connection?

Polymorphous light eruption is a rash that occurs as a result of sensitivity to sunlight (photosensitivity). People who are sensitive to sunlight can experience an itchy red rash after being in the sun, usually in the spring or early summer.

Sometimes called sun poisoning, polymorphous light eruption usually resolves without medical treatment within a few days but may last a week or longer. Cortisone creams or antihistamines can help if the rash is uncomfortable. Gradually increasing sun exposure times in the spring and avoiding intense sun exposure is the best way to treat and prevent polymorphous light eruption.

Polymorphous light eruption occurs most often in areas that are covered in the winter months and exposed in the summer months, such as the front of your neck and chest....


I fit ZERO risk factors too.. very strange!!!

Risk factors: Although anyone can develop polymorphous light eruption, you may be more likely to develop the condition if you:

1) Are female
2) Younger than age 30
3) Are fair-skinned and live in northern climates
4) Have a family history of polymorphous light eruption
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Postby Wonderfulworld » Sun Apr 18, 2010 10:56 am

Have all 4 risk factors a decade ago and had it, indeed, way back way before diagnosis too.
I actually 'trained' my body to tolerate sunlight. The only thing that works is to actually sunbathe gradually and ignore the rash and over time your ability to tolerate UV will change. I never get it now at all.
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Postby Bethr » Sun Apr 18, 2010 1:17 pm

Hi, I get this sun sensitive rash at times, and my diagnosis now looks like being changed from MS to Porphyria. Porphyria and MS share many of the same symptoms, including brain lesions & peripheral nueropathy.

My sister was misdiagnosed 20 years ago with MS also (porphyria is heriditary usually).
These rashes can appear due to drug reactions. I got my last rash one month after a dental anaesthetic. I also get it when on the contraceptive pill and if my iron levels are getting a bit high, combine with some sun exposure. I also get hyperpigmentation on the eposed parts of my arms.

Hope that helped.

Cheers
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Postby shye » Sun Apr 18, 2010 1:34 pm

Hi Bethr
my tests for porphyria are always part yes, part not confirmed--difficult to test correctly.
But my MS diagnosis was questionable to me (and to some Drs) at the time, one of reasons is that radiologist felt my brain lesions could be MS OR could be microvascular disease--and of course now we see tht MS is vascular!! and I had severe optic neuritis--so would fit MS, but I also fit prophyria, and my symptoms are very much porphyria--
including for two summers getting the blisters mentioned on this thread.

What I am wondering, since I stopped on the porphria testing:
you mention that brain lesions can be formed from porphyria--this I have not seen, and if can confirm this, will go back to porphyria testing, maybe even do the genetic testing (very expensive here)--would greatly appreciate the links on this, and any other info that you have that would connect to the MS symptoms. PM if you prefer.
Many thanks.
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Postby Bethr » Sun Apr 18, 2010 2:35 pm

I've had a couple of tests, but they did the wrong ones for me at the time, with the rash you need to do blood tests, and I just got the faeces and urine done, and I'd just done a phlebotomy so that wouldn't have helped. I'm going cold turkey at the moment, I've had no blood draws for 6 weeks. I'm back to sleeping all the time and really aching joints, but I don't want to upset my next lot of tests.


Heres a link to one case
http://www.springerlink.com/content/grjnb0ft55bckyqr/
MR imaging of acute intermittent porphyria mimicking reversible posterior leukoencephalopathy syndrome

Another route to try would be to get your rash biopsied by a dermatologist.
I think it's quite hard to get the genetic testing done, unless you have some clue as to which Porphyria you are looking for. Some families have their own variants. I tried to get it done here in NZ and pay for it, but they wouldn't have it on, so I have to go the long slow road of endless specialists. :roll: hoping to pick me up in an attack. I'm currently just smouldering with a monthly menstrual rythym and quite a lot of lower back nerve pain and joint pain.

Cheers
Beth
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porphyria testing

Postby Selmahope » Mon Apr 19, 2010 6:07 am

What kind of doctor would know to look for porphyria and know how to test for it?

I don' t have rash's, digestive issues etc---

But my mother has had this horrible rash on her neck for about 15 years/not sure-that is aggravated by SUN and food sensitivities and she has gut issues-and fibro/cfs type issues.
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Postby Bethr » Mon Apr 19, 2010 11:57 am

I've read the average time lapse for diagnosis of Porphyria is 33 years :lol: No kidding. So it's little wonder that most doctors know very little about it. You could bring it up with your doctor and see how much they know, or if they can redirect you to someone who does.
I'm currently seeing a neurologist, a dermatologist, an environmental doctor, a rheumatologist and hemotologist. I think my best chances are with the dermotologist (but I do get the rash). We believe that at least 5 of our family have this, of those only two get the rash. It's normally only about 30%, so that sounds about right.
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porphyria

Postby Selmahope » Mon Apr 19, 2010 2:59 pm

Now that you know you have this will this change your treatment approach-what are you doing differently?

BTW- love new zealand- my husband and I took our honeymoon there 25 years ago. I was hoping to go back for 25th anniversary-but of course now things have changed..........

hope to get well again to go back there.
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new z

Postby Selmahope » Mon Apr 19, 2010 3:01 pm

thought i saw you (beth )were from NZ- now I can't see your profile.. maybe i'm dreaming!
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Postby shye » Mon Apr 19, 2010 3:01 pm

Bethr
thanks for your reply and info.
My problem is have SO many different problems, and which is the core problem! I got the skin blisters only for the two summers, prior to that, and since, symptoms would be for the other porphyrias (would have to look them up, but think is Acute and hereditary), NOT for cutaneous.

The major teaching hospital I have been both an inpatient and out paitent, now has a Porphyria genetic testing and training clinic--but apparently are only taking proven cases. When I get the time and energy, (am caught up in some time comsuming problems right now, so won't be for a while) I will get my records together, and try to go speak to someone there (or maybe send an email with detailed reasons why think have P, etc) in order to get advice on testing--OR since I have not had luck to date with testing, to see if they will do the genetic. Maybe I can convince them, with my history (much of the history is in their computers, so should be easy for them to get that part together) to just do the genetic for the three most common, and of course, for the two I most likely fall under. This is not insurance covered, and I think it is over $2000.
I will let you know when I start this action, and keep you informed of their response. They are connected to all the major Porphyria clinics in the US ( I think there are only 6), and I think they are the only ones doing genetic testing in the US. Who knows, maybe they test anyone from anywhere. I will let you know how easy or difficult it is to deal with them.
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Postby shye » Mon Apr 19, 2010 3:15 pm

Selmahope
When I was searching for drs knowledgeable about Porphyria about 5 years ago, the ones listed were all gastroenteologists-- but a good hematologist SHOULD know about this.
If you do try to contact anyone, would be best to read up about it first--I find it is so rare, that most drs have no training in it except for a few paragraphs in med school (and so, tend to discount it). Better yet, if you are hopefully close to a major medical school, someone there should be able to help you (although 5 years ago no one could help me at the major medical school here--yet now they are one of the only 6 major Porphyria centers in the US--but only for research!!!)

The more I start looking for answers to all the med problems I have had and have, the more I see that often there are no really good answers out there--we need to do our own research, and keep knocking on doors til we get answers and help.
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Re: porphyria

Postby Bethr » Mon Apr 19, 2010 10:45 pm

Selmahope wrote:Now that you know you have this will this change your treatment approach-what are you doing differently?

BTW- love new zealand- my husband and I took our honeymoon there 25 years ago. I was hoping to go back for 25th anniversary-but of course now things have changed..........

hope to get well again to go back there.


Yes, I'm here in NZ :D and enjoying a beautiful warm mild autumn.

I'm on a high carb diet now, I eat carbs regularly, every 2-3 hours, and a lot more sweet things than I would usually eat. I'm staying away from chemicals and cleaning products (hubby is doing most of that stuff now - it's great!!) We have an accommodation business and I was doing heaps of cleaning so that wouldn't have been helping. I'm reducing my iron levels, as I tend to load iron, doing that with phlebotomy, that helps my fatigue majorly. Trying to give up coffee - very hard as I crave it. I'm drinking tea now. I am keeping right away from any prescription drugs as I believe this last attack was set off with a dental anaesthetic, as was the attack in 2008.

Treatment of Porphyria is really more about not triggering attacks, other than the phlebotomy which is probably going to be a problem getting, the rest is mainly up to me avoiding things that might set me off. There are drugs that Porphs can use, but most doctors don't have a clue about them. There are databases online and a few forums to talk to others. They have more knowledge than most doctors, that's for sure.

I've written the environmental doctor off today, wants me to chelate for mercury at some exhorbitant cost. Said Porphyria was for conventional doctors. Yeah right, that's why my conventional doctor sent me to him in the first place, she admits she hasn't got a clue about it.
Hopefully more luck with the dermatologist tomorrow. It will be interesting to see what they think of my hyperpigmented arms and gums. The rash I only have photos of, as it went away after the phlebotomy's.

Wish me luck ladies, I'm almost ready to give up looking for help.
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Postby Selmahope » Tue Apr 20, 2010 7:23 am

Beth- It sounds like you are doing really well- I love NZ! Where in NZ are you? I visited both the south and north island for 3 weeks 25 years ago.

maybe there was a reason my mother has been a sugar holic all these years? (she has the weird itch rash on neck that never goes away, gut issues, fibro etc.). I always thought the sugar caused all of her problems.

Drugs certainly led to my crash-but I'm not coming out of it and it's now been almost 5 months..........I've also been declining neurologically since onset of ON 4 years ago-acclerated by the herb induced neuro explosion and now drug induced explosion-but I was in decline prior to drugs and knew I needed to something-

I don' have gut issues or strange rashes etc.

Given I'm in agony (now on GP for nerve stuff in brain/neck)-I feel like I have an infection in my brain- and of course I have the numbness, muscle weakness, shaky weak neck, insomnia, dizzy, balance etc etc. t ogo with it-

feel like my on recourse is lyme treatment. Of course that involves a boatload of drugs for years for neurological lyme--which could make me worse-

Also researching stem cell treatments (that's a big gamble)and considering getting tested via doppler for CCSVI (although I don' t have the brain legions or an MS diagnosis.

Whatever I have has been extremely progessive in nature.

I need to figure out a way to get out of this hole and get my life back (homebound now 5 months).

Frustrating based on my impeccable whole foods, no wheat diet last 12 years and exercise every day etc. I've done.
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Postby Bethr » Tue Apr 20, 2010 11:58 am

I'm right at the bottom of the North Is. in Wellington, born and bred here.

I understand your frustrations, it's so hard to know what to do next.

At the same time, all the frustrations of seeing doctor after doctor can't be good either. Stress is just so taxing on the body. We'll see what happens at the dermatologist today. I'm feeling like I should just hibernate for the winter and recoup for a while.
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Postby shye » Mon Apr 26, 2010 8:28 am

Bethr
I found some info that I think would be helpful to you--sent you a PM
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