Discussions By Condition: I cannot get a diagnosis.

Possible Purpural Nodosa? Vasculitis?

Posted In: I cannot get a diagnosis. 6 Replies
  • Posted By: FixMEdoc
  • March 24, 2007
  • 05:10 AM

Anyone know about autoimmune disorders ???

I've had several different symptoms arrise over the past several years. Of course, at first, their were no visible signs, & then my bloodwork was "AOK," and scans looked fine....So, I got the favorite diagnosis, when something isn't immediately apparent. I was just depressed(didn't matter what the symptoms....Prozac would fix it. Which is very degrading, as if saying, "Here you go. What you have is an emotional need for attention, and these should help curb that.." :mad:

I'm 27 years old & female

I just noticed that I have red pin ****k dark red spots under the surface of my skin ~ Very dense around my ankles and more sparse upward, stopping maybe 3" below my knee ~ When I press my hand on my leg, and rub up my shin, these don't go away like some other light red marks, like where some hair follicles are.

Also today, when looking in the mirror, I saw some blood in my nose, which was surprising(because I've never had a "nose bleed"), and found that I have an open sore over my septum. (???)

And THESE are the other symptoms/diagnosis I've had & about when they started
Maybe some are not related to others ~ Who knows??? Well....Not the Doctors :p

* 2 yrs ago(symproms as long as I can remember) ~FINALLY, diagnosed w. Narcolepsy

* 2 yrs ~ Pain in upper right abdominal quadrant ~ GI did CT, found nothing & diagnosed as possible gal bladder pain ~ Usually just a discomfort, but 3 times have had a sudden "attack" that hurt with darn near the equivalent of child birth- Once was only for a few seconds, once was for about 5-6 hrs.(went to ER and they finally took me back for a CT scan right after it suddenly stopped hurting....found nothing), and about a week ago, for about and hour or so

* 2 yrs ~ Back, shoulders & neck pain/spasms ~ Got so severe, it forced me to walk w/ my right shoulder forward for months ~ PhD sent me to Phys. Ther. sent me to pain mgmt. ~ Series of steroid injections eventually gave me relief for several months, but not pain is coming back

& NOW...more rapidly & more recently ~

* September ~ Thought I was developing adult acne, but get these sores on my face, neck chest/sometimes they are just knots that can protrude up to an inch from my face filled with only sebum/They eventually get very infected & I have lots of scarring to skin that had never given me problems in the past

* September ~ My joints in my fingers, wrists started to hurt...sometimes- though NOT neccessarily worse in the am/BUT both sides of my body seem to be symptomatic at the same time

* Mid-October ~ Headaches nearly every day, usullay starting in the afternoon

*Mid-November ~ Joints in hips, toes started to hurt/ALSO equal on both sides...or if 1 hip hurts today, they both do. ;)

* Mid-November ~ Feet started turning purple & got itchy purple bumps on the my toes/ESPECIALLY the furthest toes, and especially near the end & they itched like CRAZY when I'd lay down at night, but coritizone cream gave me relief

* Early December ~ Started losing sensation- ESPECIALLY when sitting ~ Sometimes I don't realize that both legs or an entire arm(arms only go numb when lying down) has gone "numb" until I go to use it i.e. I go to stand up, and end up going straight to the floor(which is sometimes rather entertaining). The first time it happened, I thought I'd tripped on my chair. It wasn't until my 3rd attempt to stand, that I realized there was absolutely no sensation in my legs or feet. When the feeling gradually comes back, there is never a "pins & needles" sensation, like when something "falls asleep"

* Mid November ~ Vision started to deteriorate

* December ~ drenching night sweats

* December ~ fevers in the evenings/mostly in my torso and thighs

* January ~ White BC- 3.2 found during bloodwork

~ This is something else possibly significant ~

I go through these periods, where I'll wake up one day feeling as if I awoke in the middle of the night, and drunk a gallon of vodka...before stepping in front of a truck(one in motion... =) Every joint hurts ~ My muscles feel like I made a feeble attempt to run a marathon the day prior ~ My head is SPLITTING/literally feels as if it may "crack" ~ I'm extremely nauseus

And then I have better days...Like today....My wrists, elbows, and finger joints hurt and I have some soreness in my muscles in my arms and back, but am otherwise okay.

I do have an appt. with a different Dr. next Thurs., but I'm very reluctant to go just to have a new "clean bill of health" stamp slapped on my back, and be sent on my way....with my Prozac perscription in hand :o

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6 Replies:

  • Vasculitis is a possible factor, with the discoloration you are discribing. Do you know if you were tested for Borriella, Lyme and other coinfections? Many people with Lyme have been through much of what you are speaking of. And many, many yrs of being UnDx'd with it. Some Lyme tests give false negs and the drs go by the tests and don't look further. There are some good sources on the net for info. I don't blame you for not wanting the slap on the wrist with antidepressants and sent home. Been there done that, too many yrs. Good luck.
    Anonymous 42789 Replies Flag this Response
  • My brother had a purpural nodosa infexction... at least I think thats what it was... he had SEVERE joint pain and his feet and legs had the broken blood vessels purple tinge.. his feet swelled so badly that the skin started to split open. He couldn't move.. it was awful.. it turns out he got it from a strep throat infection that went undiagnosed and spread to his blood
    prettyprettypumpkin 47 Replies Flag this Response
  • My brother had a purpural nodosa infexction... at least I think thats what it was... he had SEVERE joint pain and his feet and legs had the broken blood vessels purple tinge.. his feet swelled so badly that the skin started to split open. He couldn't move.. it was awful.. it turns out he got it from a strep throat infection that went undiagnosed and spread to his bloodI'm not regionally susceptable to ticks(and have actually only seen 1 in my life), so I doubt it's lyme. I couldn't find much info about boriella, so I'm not sure if I have a variety of symptoms that fit into that classification. THANKS FOR YOUR HELP!!! I'm really about to lose it :p
    FixMEdoc 53 Replies Flag this Response
  • Hi. Sorry to hear about your trouble. Have you seen a neurologist or rheumatologist yet? Some of your symptoms suggest problems that one or both of these specialists might be able to address. A low WBC count can be indicative of a serious problem. This might be totally off base, but have you had an HIV or glucose test? HIV can cause low WBC, fevers, skin problems, etc. Diabetes can also present itself with some of the symptoms you are describing. If your WBC is low, among everything else, it's important you try and manually boost your immune system with a daily multivitamin and possibly other supplements. Consult your doctor before using anything.
    Anonymous 42789 Replies Flag this Response
  • You know, actually I thought of HIV as an option. I don't know how long it can lie dormant, but my last test was 5 yrs ago. My oldest daughter is 10, and her father is from Gambia, but I don't know if could take that long to present symptoms. What about the glucose test???? B'cause I know that Celiac's is related to gluscose intolerance, and I forgot to add that I've had bright orange oil in my stool(or without a stool at all) a few times over the past 2 mos. which I read could be associated with that. I don't know what symptoms are associated with glucose problems. I DO know that I'm not diabetic.
    FixMEdoc 53 Replies Flag this Response
  • Your posting re: mid-November and the "purple feet, itchy toes, especially the last two and impossible to sleep when you lie down, backs of ankles itch like CRAZY!" You described exactly what I am dealing with. Everything I read says leukocytoclastic vasculitis but I am still waiting on the biopsy to come back. Too early for me to tell if it is systemic or caused by drug or food or airborne. Whatever you have, I have, so at least we are in this together. What does your dermatologist say?
    Anonymous 42789 Replies
    • September 27, 2008
    • 03:44 AM
    • 0
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