Anybody heard of a condition like this?

Everything else
1

My wife was an extremely frustrating thing going on. Every 5-6 months, since 2 years ago, she’ll get these symptoms. We’ve had the hospital, an allergist, dermatologist, and family practice doctors look at it and they’re all stumped. So, maybe someone here has seen it before or has some suggestions.

It starts as tenderness and pressure sensitivity in her fingers or toes. It will be a thumb or a single toe. Then after a day, it spreads to the palm or ball of the foot. The toes/fingers turn bright red and start swelling. In a few days, they’re to the point where she can’t walk or can’t bend her fingers at all. This time around, it’s starting in her toes. 3rd toe of the right foot started it yesterday, and now it’s both feet, all toes.

Last time it started in her thumb. This was in May. It took about 3 days to have both hands bright red, front and back, and after 2 more days she woke up with her hands completely normal, but her feet starting to do it. It cycled back and forth for a couple of days and then her lower lip joined in. A couple days later it was gone.

The time before that was quite severe. We headed home for the christmas weekend and in the car on the way there it started. One hand severely swollen and unable to stand having it touched or to use it at all. After 4 days of that, it became a bright red rash on her upper and lower arms, back, stomach. Two days later it was both feet, both hands, and even more intense rash. At that point she was immobile, so I got her to the emergency room. $3500 later they still couldn’t do anything but run a ton of blood work that all came back negative. We’re still paying that one off. So, we went to an allergist and he gave her steroids, antihystamies, nerve pills - nothing touched it. I just finally went away on its own after a 2 1/2 week ordeal. That was the worst it ever has been.

So, it started in her toe and we knew what it probably was - so we went to the allergist again today. He did the full battery of food allergy testing and it turned up negative on everything. I’m rather surprised he didn’t do any metals, minerals, or stuff I personally had allergy testing done on - pet allergies, stuff like that. The previous blood workups came back negative for the other stuff like soriasis, lupus, diabetes, etc.

The only other thing of note that I can think of is that she seems to have some sort of reaction with the local water supply also. It’s nothing like this, but after taking a shower she’s got a slight rash and intense itch that lasts for about an hour. This allergist doesn’t see any correlation between the two. I’m thinking maybe it’s some mineral in the water - I’m looking into having it tested - and it doesn’t happen back home in Ohio. We’ve lived in a few different locations in the city, on different water supplies, and it’s the same wherever in Raleigh. However if it was the trigger for the intense episodes of swelling and pain you’d think it would be constant.

I do find it very interesting that it always happens at a fairly regular interval of 5-6 months. Here’s how it’s gone thus far. March 2005, Aug 2005, Dec 2005, May 2006, Sept 2006 - right now. Pretty regular. Varies in intensity from a mild 4-6 days to a crippling case that lasted 2.5 weeks. No drug seems to even touch it.

One other item… My buddy Ralph had this shit. Once. His was a 2 week shot of it, and while I didn’t see it, he’d heard me talk about my wife’s episodes before and called to tell me what was going on with him. Exactly the same symptoms. He said someone else he knew apparently got it at the same time as him although they were never in the same place together. He talked at length about his symptoms and there’s very little doubt it was different from what’s going on with my wife… except that his hasn’t been back.

I can’t think of anything she’d be exposed to every 5-6 months regularly that isn’t constantly present in the house. No change in pets, cleaning supplies, detergents, bathroom stuff, nothing.

I’m stumped, frustrated, and getting pissed off with the lack of answers from the medical folks. Anybody got any ideas?

2

This is totally out of left field, as I’ve never heard of your wife’s symptoms, nor am I remotely qualified to diagnose anyone…

A coworker of mine had bouts of “not feeling well” and developed a rash on his stomach. No one could diagnose him, for months, until a demotologist suggested it was mercury poisoning; he had a heavy fish diet. Granted he never described symptoms such as your wife’s, but the fact that no one has tested her for metals, and it’s a mystery to your doctors, I thought I’d throw that out there.

3

Possible. That’s why I’m thinking some mineral content in the water supply maybe. Since it’s periodic like it is, maybe it’s something they DO to the water - like to kill algae or something where they have a constant supply in there but every 5-6 months maybe spike it hard with a big dose and that makes her break out bigtime. I dunno.

I was also reading about people with nickel allergies. The problem with googling for something like this is that you turn up 1000 websites suggesting stuff you KNOW it isn’t… like lupis or excema, or diabetes. We’ve ruled all that shit out - so the “play doctor” websites are worthless.

4

Some other things to think about (which may be stupid but oh well)… Lead, Teflon, Lyme Disease, and (you already mentioned Lupus - but it can go for a while before being detectible). There’s a lot of diseases that can have extremely ambigious symptoms that are difficult to diagnose.

I’d also suggest you go to a hospital in another part of the country. I konw that sounds extreme, but sometimes doctors/hospitals get “conditioned” for their locale and a fresh perspective can only be obtained by going a little further away.

I wish you two all the best, and good luck. Let us know how it goes.

5

This is a crazy case, for sure. Doctors can’t solve everything, that’s for sure. The doctor, veterinarian, or car technician never seems to be around just when you need them to diagnos a problem. The only thing I could suggest, is keeping a very, very, very detailed joural of everything you do, eat, and interact with day by day…that way, hopefully, you might notice something similar next time these syptoms occur. Hopefully you’ll find either a food, soap, or something that you can tie this shit to. I hope everything goes well. :/

6

You need House.

7

You need House.

We’ve already mentioned and discounted Lupus, I recommend some seemingly random course of drugs that might just kill her if it doesn’t make her better.

8

The House Checklist

  1. “It could be lupus.”
  2. MRI.
  3. “It could be sarcoidosis.”
  4. Lumbar puncture.
    4a. Heated discussion with patient/patient’s family.
  5. “It could be some form of cancer.” “But that wouldn’t cause these symptoms!” “It would if there was paraneoplastic syndrome!”
  6. Biopsy.
    6a. Flirting.
  7. Drugs for the doctor!
  8. Threats about kill-or-cure treatments to force the patient and his family to make embarrassing and damaging admissions about lapses of conduct in their personal lives.
  9. Kill-or-cure treatment.
    9a. Jokes!
  10. Another MRI, because things are going badly.
  11. Hilarious violations of propriety, ethics, and the law.
    11a. Doctor gets punched in the face.
    11b. “Give me your gun and badge.”
  12. Patient is saved from imminent death.
  13. The effect of all this on the patient’s insurance premiums is not discussed.
9

I really, really hate doing this, because I have played “google doctor” for my wife before and it gave me a lot of unneeded grief for a month earlier this year until a real doctor and an MRI scan could dismiss my so sure but ultimately wrong diagnosis.
That said, this seems somewhat consistent with the symptoms and it hasn’t been mentioned:

http://www.medic8.com/healthguide/articles/raynauds.html

10

My wife has a mild form of Lupus, and she gets Reynaud’s at times, but it’s characterized by numbness and tingling, not swelling. But this does sound like what he’s describing above.

11

Yeah, Reynauds is out… poor circulation causes a white/blue color to the extremities, not fire engine red. Also, this is extreme pressure sensitivity. Finally, it does spread to other areas of the body and when it does it looks like shingles or hives or something. Usually it’s limited to the hands/feet but not just the fingers - it’ll have the entire hand swollen up like a cartoon character hand. Bright red, radiating heat. Looks like a sunburn and feels like it too, plus the itch of a bee sting.

They tested for shingles in the battery of tests. They’ve hit her with so much histamine blocker that it simply cannot be a histamine based reaction. You’d think a week worth of prednazone and doxepin would beat down any sort of allergic reaction.

12

It sounds like an auto-immune response, possibly brought on by stress of some sort, physical or perhaps psychological.

13

I think I’ve finally nailed the thing.

http://www.erythromelalgia.org/tea/skins/cms/viewpage.php?pname=Diagnosis

Symptoms fit exactly, 100%, with her condition.

This could just as well be a picture of her:

Severity: Episodes often begin with an itching sensation, progressing to a more severe pain with a burning quality. Pain may be so intense that the patient cannot walk; some must even keep their feet immersed in ice water.

Erythromelalgia, also known as Mitchell’s disease (after Silas Weir Mitchell) and red neuralgia, is a rare disorder in which blood vessels, usually in the extremeties and especially in the feet, are blocked and inflamed, causing a painful burning and throbbing sensation and red skin. The attacks come and go, and tend to be worse in summer. Erythromelalgia is often associated with vascular diseases such as polycythaemia vera, thrombocytosis or with heavy metal poisoning.
Erythromelalgia responds to cooling, and often disappears completely on taking non-steroidal anti-inflammatory drugs, such as aspirin. Cooling as a treatment is not recommended as the change in temperature may cause chronic cycles of flaring and dilation of the vessels in the extremities.
A primary (or familial) form is termed erythermalgia. This occurs in patients who are younger. The disease is very rare. It has been linked to a mutation of the SCN9A (a sodium channel), the gene of which is located on the long arm of the second chromosome (2q24). It inherits in an autosomal dominant fashion.
Many sufferers of erythromelalgia find that spicy foods can also set off a flare-up. For others, a flare-up can be set off if pressure is applied to the extremities like fingers or toes. Erythromelalgia (in a mild form) can be detected by a stiff feeling, swelling, or redness in the limbs.
Raynaud’s Disorder is the opposite of erythromelalgia and can occur simultaneously (but on different limbs).

Here’s another writeup:

A rare syndrome of paroxysmal vasodilation with burning pain, increased skin temperature, and redness of the feet and, less often, the hands.

The cause of primary erythromelalgia is unknown. Secondary erythromelalgia may occur in patients who have myeloproliferative disorders, hypertension, venous insufficiency, diabetes mellitus, SLE, RA, lichen sclerosus et atrophicus, gout, spinal cord disease, or multiple sclerosis.

The condition is characterized by attacks of burning pain in hot, red feet or hands. In most patients, distress is triggered by ambient temperatures from 29 to 32° C (84.2 to 89.6° F). Trophic changes do not occur. Symptoms may remain mild for years or become so severe that total disability results.

Diagnosis of erythromelalgia is based on the relationship of complaints to increased skin temperature. Secondary types should be differentiated from the rare primary type because correction of an underlying disorder may relieve symptoms. Differential diagnosis includes posttraumatic reflex dystrophies, shoulder-hand syndrome, causalgia, Fabry’s disease, and bacterial cellulitis. Because erythromelalgia may precede a myeloproliferative disorder (even by several years), frequent blood counts may be indicated to allow early diagnosis and treatment of the latter.

Attacks can be avoided or aborted by rest, elevation of the extremity, and cold applications. Therapy is not always successful. In primary erythromelalgia, aspirin 650 mg 1 to 4 times/day may provide prompt, prolonged relief. Avoiding factors that produce vasodilation is usually helpful, and vasoconstrictors (eg, ephedrine 25 mg po, propranolol 10 to 40 mg po qid, methysergide 1 mg po q 4 h) may also provide relief. In secondary erythromelalgia, the underlying disease should be treated.

14

This is going to sound kind of retarded probably, but the first I thought of was gout. In any case, keep these diseases in mind (the ones that have not yet been ruled out).

15

None of you people know what you’re talking about. His wife’s mutant ability to project and control the element of fire is emerging. He needs to get trapped under a schoolbus or be the victim of some other traumatic event so that the power can fully manifest. Remember to be careful, there is probably a lot of stored power in her X tissue, and she doesn’t have much practice controlling it. My cousin had the same thing, his hands hurt for years until someone tried to mug him and he levelled a city block in Cleveland. After that he was fine and no one noticed about the damage because it happened in Cleveland.

16

Is that what set Lake Erie on fire?

17

No one can control fire. She’s a wild one!

18

fire, huh, huh huh, he said fire, huh huh huh