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Jenfrombill
06-18-2008, 11:03 AM
Sorry this long but I do not know what to do.My dad had a stroke and he tested postive for Lupus Anticoagulation- he is now on a blood thinner and they believe this caused his stroke. so when I went to my OBGYN, I am on the pill, she asked about new family history and I told her. She had me tested immediately and it is positive. My primary is annoyed. He didn't want to test further. He said she opened a can of worms and it is probably a false positive. But I have been seeing him for severe headaches- I was diagnosed with cluster headaches but the meds do not work. I have seen him for back pain, neck pain, paralysis (we think this was caused by high potassium at one point 6.5- which he did nothing about becuse he assumed it was a mistake and then for several months I still tested between 5.6-6.0). I have alo seen him for problems focusing, concentrating, extreme fatgiue. I also have problems at night where my knees or elbows get really painful and it hurts to straighten them or move. Sometimes I need to put blankets between my knees, it is awful pain. I also had a few periods where my lower back was in extreme pain for months, I couldn't walk on my feet in the morning withouth being in severe pain for the first hour or so. Sometimes I notice more clumps of hair falling out when I brush it, more than usual. I call it shedding. I also had seen him for dizziness and my heart felt like it was beating out of my chest- he did and EKG at that point because he was concerned my potassium, which he did nothing about may have effected my heart. My arms, legs and feet sometimes tingle or get weak or like right now, my foot is numb. I walk on it and I feel like I have something stuck to it because the middle to heal can feel the coldness of the floor but the front part can't. I went to the ER the other night because I was in so much pain from my headache and my pulse was 104 and my blood pressue was 156/96 (2 weeks ago it was 122/79) but I ended up leaving after waiting for hours, only to find out the nurse thought she had done blood tests on me and when she realized she didn't she said it was at least another 2 hours before I could see a doc because they would wait for blood tests. The EKG was normal but I had pain in my chest shooting to my back. But my head is awful! Anyone ever experience this? My doctor told me yesterday after he finally decided to order more blood work to sort out this Lupus Positive test that I seemed edgy with all this. Am I going crazy? I can't take the headaches. everyone is sick of me saying I am tired, my head hurts, my back hurts, my foot is tingling or my hip hurts Any help or suggestion I will appreciate! Could it be Lupus or is my doctor right and it is just a false positive. He seems very doubtful it is anything to worry about. I also have periods where I am wicked itchy but I do not have a rash, just itchy skin. I have a red face too, everyone thinks I have been in the sun, when I haven't.

Oluwa
06-18-2008, 11:36 AM
Hi Jen...

First you are not crazy..never doubt your body..it is telling you something is wrong, they are just not listening to you or the test results to include or rule out.

I find it odd how your doctor keeps doubting his and everyones test results. Don't you find that peculiar?

How can he know it is a false positive until he rules out other causes, performs other tests. Maybe it is time to seek another doctor especially if he has any dead or barely alive plants in the office...

My search has turn up the following...

The name "lupus anticoagulant" is a misnomer. Most patients with a lupus anticoagulant do not actually have lupus erythematosus, and only a small proportion will proceed to develop this disease. Patients with lupus erythematosus are more likely to develop a lupus anticoagulant than the general population though..

Headaches...http://www.headaches.org/education/Tools_for_Sufferers

Fibromyalgia, maybe? Follow the links..
http://www.nfra.net/Diagnost.htm
http://www.mayoclinic.com/health/fibromyalgia/DS00079/DSECTION=2

Potassium...
http://www.mayoclinic.com/health/hyperkalemia/HQ00843

Addison Diseases..
http://www.mayoclinic.com/health/addisons-disease/DS00361/DSECTION=2

Lupus criteria...follow the link...

http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutintroduction.aspx?articleid=75&zoneid=9

Hope it all helps to put you in the right direction...information to ask questions of your doctor. You are the caretaker of your body, so do not let your concerns go unheard...

Need clarification..ask...

They should at least be treating your symptoms to a certain degree, reevaluating your prescriptions and add or change up the regime...

Keep looking for your wellness...
Be well,
Oluwa

rob
06-18-2008, 06:12 PM
Hello Jen,

There is something going on with you health-wise, and you need to seek a second opinion if your primary is not taking your symptoms seriously. The symptoms you talk about, with the exception of the female specific things, are very close to my symptoms when I was first diagnosed with SLE. Clumps of hair suddenly falling out, severe joint pain, and the lack of "focus", or brain fog, as we call it, are some common Lupus symptoms. I have fatigue that feels like I'm covered in a lead blanket, and I forget every little thing, including simple words, peoples names, etc. I really hope you don't have Lupus, but there is something wrong, and you need an answer. A diagnosis is needed before you can treat whatever it is that's causing your symptoms. I've learned that many Dr.'s are very poorly informed about Autoimmune diseases. Even specialists, like Rheumotologists, can be unaware of the facts because they haven't dealt with any significant number of patients with the disease. In your words, I hear fear, and uncertainty. The same feelings I've had many times. If you believe there is something happening to you health-wise, you should trust your instincts and pursue an answer. It seems that people with Lupus get the runaround far too often, and are told things like "it's all in your head". Well, it's in your joints, and those are not located in your head! There are some really well informed people here, and the facts and advice here are right on the money. This is also a very open, and understanding place that you can come to to vent, and not worry about being judged. Please, let us know what you find out, and how it goes for you. Oh, and by the way, Welcome.

Rob

KathyW1958
06-19-2008, 03:16 AM
Hi Jen,

I think that you need to find a doctor that will listen to you and take you seriously. I don't know if you have Lupus, but you do need to find out what is going on with you. Please do not let the doctors dismiss you. I did that for years and it nearly costed me my life. A lot of doctors do not like to diagnose Lupus and they do not understand very much about Auto-immune diseases. You have to make it very clear that there is a problem with your body and that if they are not willing to try to figure it out that they will not get paid. It is mot right for a doctor to treat people like it is all in their head when it is not. I hope that they can figure out what is happening with you. God Bless.

Kathy

Jenfrombill
06-19-2008, 04:18 AM
Thank you everyone. And Rob you said something that struck me- you forget simple words and stuff, I have that problem so bad. I would be in a conversation and have no memory of the word I am trying to come up with, I know it is a simple common word but I can't think of it. My fiance gets so annoyed with me, he always thinks I am just in a cloud and never paying attention. When I went to my doctor about my forgettfulness, my inability to focus and awful fatigue he asked if I was depressed. Then he decided it was ADD and put me on Adderall. This was 3 weeks ago. You would think with this blood test coming back and me seeing him just 3 weeks ago for those sypmtoms, he may have wanted to order some blood work. Maybe it is a false positive, although my dad has it, but some testing would be nice. I am so frustrated with him. My family is telling me to change, and I am! But it is not something that you can just pick up the phone and make a new appt with someone. I need to find someone, call my insurance and transfer records. I am going to do it, but i just can't decide today I am seeing someone else, insurance says no can do. I do get most of my blood work results tomorrow. My OGBYN ordered a ton of tests and then my primary thought he could get involved too.

rob
06-19-2008, 06:46 AM
Hi Jen,

Finding a new Dr. can be a real pain in the butt. I've had to do it so many times, it gets really old after awhile. The brain fog I have corresponds with having a bad flare up. There is a very distinct difference in my cognitive abilities between my good days, and my bad days. On the good days I'm still not 100 percent, but I don't struggle with the simple things like on the bad days. It's really frustrating. Lately, I've been confused about where to put an apostrophe in my sentences, and spelling simple words is very hard to do. I use a voice program on Vista sometimes when I am confused, I can speak instead of type. Today, I'm typing. Many times I'll be on the phone, or talking to someone face to face, and I stop in the middle of my sentence because I'm suddenly lost. It's like the thought process of what I'm saying is grabbed by something and taken away, and poof, it's gone. It's so frustrating, and embarassing. I used to do a job involving some complex technical skills, and I also used to write magazine articles quite a bit, but I can't do it anymore even on my good days. So, I try to learn what abilities I do have, and I concentrate on that. It sounds like you are taking control, and steering your situation in the direction you need, in order to find an answer. Don't be afraid to come here and vent, it really helps. Anyway, thanks for letting me bend your ear for a bit.

Rob

Goldee
06-19-2008, 08:20 AM
Jen, from what I can tell, getting a diagnosis is not easy. I guess we're so used to going to the doctor, getting our throats swabbed and within minutes we're told we have strep. Why can't lupus (and other illnesses) be as easy?

I am still on the journey to find out what exactly I have. I am in the process of getting all my medical records. I first made a list of the doctors I have seen, including the addresses, phone number and faxes. Then I created a letter identifying myself, that I may have an auto-immune condition and that my specialist needs a clear medical history by such and such date. I asked the office to fax my medical records to me. I stated that I understand there would be a fee and provided my cell phone number so they could reach me for questions or payments. I then used this letter & made modifications for each physician.

Reviewing my files has been very enlightening. I am overwhelmed at how many times I had "false positives" for one thing or another that the doctors dismissed. I am not sure why they would assume something is a "false positive" --- especially when we have symptoms that support an actual positive. I wonder what would have happened seven years ago if I had insisted they follow up with more tests.

I contacted a non-profit Lupus organization and asked for rheumatologists in my area. They provided me with a nice long list of specialists for me to make an appt.

Also, in the future I intend to get copies of all my medical tests & any pertinent records. I won't put a doctor (or someone else) in charge of my health again!

Good luck!

laurid8967
06-19-2008, 08:46 AM
Goldee,
So funny (strange) that you said that about your old medical records. I too have been looking through alot of my old stuff and have to make calls for the rest, but I have noticed that most of my urine tests showed red blood cells, my blood work always has low RBC, low leukocytes, high SED, and more. Certainly nothing conclusive for lupus - but indications all over the place. Oh well, one of my favorite sayings: I may not be where I need to be, but, Thank God, Im not where I used to be!!
Theres been progress - Im being treated finally and listened to - so I try to remain grateful for that.
Lauri

Jenfrombill
06-21-2008, 05:03 AM
My A&A was positive, my CRP was positive as well. I have more tests still pending. My doctor said I do have an autoimmune disease- they just need to figure out which one, it may be Lupus.