Positive ANA, weird skin biopsy, periods of severe illness, and still don't know!

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raeannem
New Member


Date Joined Nov 2011
Total Posts : 5
   Posted 11/27/2011 8:27 PM (GMT -6)   
I am new here and have been reading through posts in many areas. For years I have had health problems. My problems began with back and joint pain as a young teen. But at this same time, I was being poisoned with bleach by a caregiver. I honestly have felt that my issues were from chemical poisoning. And maybe they are-but gosh I am so sick of being sick and never knowing what is around the corner. Thing is, I have too much going on to BE sick, as I am sure all of you can agree with. I am a mom, a wife, a homemaker, and a horse trainer.

Here are some of my symptoms:
Arthritis(starting by the age of 21)
Gastric problems(for ten or more years)
Swelling in extremities
Cold in extremities(for the last 5 years)
Muscle spasms, nerve pain, cramping, often severe. (about 10 years)
Often dehabilitating fatigue.(10 years or more)
Rashes that come and go.(for about 10 years)
Weird responses to insect bites, too much sun, stress and wounds-rashes always pop up with all of them, and infections and bug bites don't heal well. (the last 5 years or so)
I get cold and flu worse than most.(since I was a kid)
Joint pain(since I was a kid)
Stomach pain(since I was a kid)
Sweet's syndrome(2006)
Bleeding under the skin in my lower legs (2006)
The list goes on

Here is what tests I have had that have at one point or another shown SOMETHING.
Skin biopsy: neutraphilic dermatosis.
Elevated BUN/Creatinine
Many times of very high sed rates, always with pos ANA
Positive for Epstein Barr
Positive for Rheumatoid Factor
Duodenal biopsy indicative of Celiac Disease
Anemia-sometimes severe.
Antiphospholipid Antibodies
Occasional positive on Lupus anticoagulant

Right now, all I have is an ANA of 1:640-well the Doc said it was higher than? Don't know the pattern but in the past it was speckled. And now my heart is always flip-flopping. They did a quick EKG and said I was fine. Sometimes I can't catch my breath. I WAS on Wellbutrin for anxiety, they said it would help, but it got worse, so now I am on Effexor, no change in my weird heart flopping.
It's depressing.

I have had some doctors blow me off. In fact, I was blown off and told to lose weight by one rheum-even though I had been on 120mg of pred for months for severe rashes and what looked like vasculitis. So that's what I tried to do. I went off the pred, tried to lose weight, avoided doctors for more than a year, and almost bled to death from my intestines by the culmination of symptoms I tried to hide. There have been times when the swelling and pain in my legs has been so bad that I simply couldn't walk. It feels like my veins have acid in them, and as I stand up, it it burns it's way down to my feet.

Also, my family history is this-Type 1 diabetes-even my six year old son now has it, but I do not. He also has celiac disease, but my blood tests for that are negative. Also, my father has gout. Can anyone tell me what the heck is wrong with me? I conceal things now out of fear-I just don't want to see the words "psychosomatic" and "abusive childhood" on my chart anymore.

But I also want to live to see my children grow up, and I am losing hope.

Please, if anyone can shed some light, I would be very grateful.

Kellysfirst
New Member


Date Joined Oct 2011
Total Posts : 10
   Posted 11/27/2011 9:35 PM (GMT -6)   
Sorry I have nothing to offer other than a virtual hug and to tell you not to give up!!! There will be a dr out there that can help. It took them 4yrs to diagnose my endometriosis. I saw one dr, one day at the ER that asked about it.
Good luck

raeannem
New Member


Date Joined Nov 2011
Total Posts : 5
   Posted 11/28/2011 7:34 AM (GMT -6)   
Thanks so much for the support-it helps to know I can talk with people who have struggled, people who understand. That is what brought me here-it can be discouraging to be ignored by doctors. I am glad you found one that could help you out! I hope you are doing much better (((Kellysfirst))))

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 11/28/2011 1:16 PM (GMT -6)   
Everything does sound like lupus, but I'm no doctor. Is your doctor giving you anything beyond the predisone?
Are you on plaquenil or any biologics?

You've had a hard time, but I hope and pray you get answers very soon.
Joy

Nana Monster
Veteran Member


Date Joined Jul 2009
Total Posts : 966
   Posted 11/29/2011 8:43 PM (GMT -6)   
If the ANA is what I think, mine today was 1.8. The anti- dna double stranded test came back as a 13
(a high marker for this test is a 9). Now they want to send me to a rhummie. I am definitely NOT doing the
major drug route as it will do more damage than good. I'm going to try to get to my favorite herbal shop and
see what my "connection" recommends. He hasn't done me wrong yet.
I also have arthritis, fibro, sciatica, scoliosis, both knees are trash, degenerative disc disease, bone spurs all
over my body, hips are going, situs inversus (upside down heart), most female surgeries known to man,
tons of lipoma and a great grocery list of stuff wrong. Personally, I think that attitude makes it easier to live with,
I know that I'll slowly go downhill but I'm going out fighting.
Nana Monster

raeannem
New Member


Date Joined Nov 2011
Total Posts : 5
   Posted 11/30/2011 11:41 AM (GMT -6)   
Hello Nana,

Thanks for the reply. It does get tiresome when you are always facing an uphill battle. The fighting spirit is strong within you! And you have the right idea. That is why I train horses. Sometimes, when things are bad, one horse a month is all I can handle. But I also work part time outside the home, grow and tend a garden, home canning, cooking from scratch, crochet, whatever I can think of. The less occupied I am, the more I feel sorry for myself on the really bad days.

Keeping active definitely helps, and I too want to go out in a blaze of glory, whether I am 50 or 100. But if I am 100, I am going to do something very interesting, like crash a bi-plane upside down in an old barn(anyone seen Secondhand Lions?)...

Nana Monster
Veteran Member


Date Joined Jul 2009
Total Posts : 966
   Posted 12/1/2011 7:41 PM (GMT -6)   
Dang good movie. I do my 40 hours a week in a 200 bed nursing home kitchen dishroom.
I unload and rack dishes and check trays. Very physical work...sometimes I go home and get
my cup of coffee and just veg. Up until the knee surgeries I was push mowing 2 acres. Now it
takes me a lot longer to do it. For fun I read, knit, crochet or spend time with the grandkids.
I have 5 that live within 10 miles of me. I'm teaching 3 how to knit and crochet and 1 to drive a
standard. She does real good with it and goes for her drivers test next year.

I'm trying to get my stuff organized as I made hats and scarf for the homeless this year (for
Rescue Mission) and some crochet kids blankets for the Linus Project. I save soda cans and this
is my 17th year donating.

raeannem
New Member


Date Joined Nov 2011
Total Posts : 5
   Posted 12/2/2011 10:45 AM (GMT -6)   
Sounds like you lead a full life!

I have a three story home and have to go up and down two flights of stairs all day. I think to myself that it's good for me, because even on bad days I have to do it, and activity always helps even if it's tough to get started. And mucking my horse pens has to be done, they don't clean themselves. Having daily chores is really good for me. If I lived in the city in a condo I would be a LOT less active. I love my farm!

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1914
   Posted 12/3/2011 9:38 AM (GMT -6)   
Do you live near a teaching hospital or university? I don't understand with your symptoms and lab tests why any decent doctor would blow you off. Are you gluten free as well? Celiac can be really hard on your system if you aren't gluten free. If you have auto immune disease like lupus, the prednisone should help. I hope you find some relief soon. Good luck.
d 1/09 with colitis sigmoid colon with some diverticular disease as well, Colon resection Nov. 2010, now in remission!
inflammator arthritis, type 2 d, asthma, skin scleroderma, VSL#3 probiotic, Vit. D, nexium, synthroid, plaquenil, lactose intolerant, benicar
Blood test positive for Crohn's via prometheus ibd serology panel ASCA. Positive ANA speckled pattern 1:180, high sed r

raeannem
New Member


Date Joined Nov 2011
Total Posts : 5
   Posted 12/3/2011 10:42 AM (GMT -6)   
I live near the University of Virginia, and just started seeing a regular doc there. Years ago I was in at their Rheum clinic, but now I am on a very long waiting list. However, at least my doc is very attentive and helpful, with a senior doctor/professor helping out which I think is a perfect set up for me. It was at the last appt with them that my bloodwork showed the ANA of 1:640. I also just switched over to a gluten free diet. But since it is hidden in many things, I am on a steep learning curve. I learning how to bake gluten free breads and read labels. I have been on pred MANY times over the years, sometimes for a year at a time with a high dose. It was what saved my life more than once. I know many people speak of possible bad side affects, but since I was on death's door so many times, I feel grateful for it, nothing else worked. I have never been on Plaquenil or Methotrexate, but I have heard of them. My new doc is not blowing me off. The doc who said years ago that my main problem was that I was obese(I had gained 50 pounds from pred I think) also thought I was a very "young looking" 42 year old, according to my records. At the time I was 24-I don't think she cared too much about me. I know not all docs are like that, but it has been a struggle.
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