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Old 09-29-2009, 03:30 PM   #1
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Just need help...am freaking out

I really feel like I am going crazy. In May of 2008 I had severe pain in my hands and forearms. I was sent to an ortho doc who told me it wasn't anything he could take care of and he sent me to get bloodwork. The results showed a positive ANA choice screen but a negative pattern and <1:40 titer (whatever that means). I was then sent to get an ANAchoice cascading reflex screen which was positive and a positive DNA (DS) with the range # being 26. I was referred to a rheumatologist who was very dismissive of my pain. He had me taking 2400mg of ibuprofen daily. I did this for about 6 months and the pain began to subside. I continued to see him, but he never sent me for any more bloodwork. I stopped seeing him on my own because I just didn't like him. I am back to having bad pain in my hands (including weird cramping), forearms, knees & ankles. I am extremely tired. I also have been having problems breathing which I have been told is asthma (kind of weird to get asthma at 43 but ok). I had new bloodwork done last week and the same thing....positive ANA choice screen but a negative pattern and <1:40 titer. The DNA (DS) is now 34. The other CBC bloodwork looks ok.
I am going to see a new rheumatologist, but am really worried that I will get the same reaction from this one. I don't go for a couple of weeks and I am freaking out! Anyone have any ideas of questions I should be asking or things I can do to feel a little better until I see the doc?
Thanks
Deb

 
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Old 09-29-2009, 05:23 PM   #2
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Re: Just need help...am freaking out

I'm glad you are seeing a different rheumy. You should start journaling your symptoms. Get copies of any lab results to take with you.

You might want to pick up Daniel Wallace's The Lupus Book. It might be in your local library. There are some really good overview chapters. It also gives you a list of possible blood tests and what the results mean.

We know how difficult it is to wail but hang in there. Lupus isn't the end of the world. Most of us live pretty normal lives. Come here often for support and to ask questions.

Last edited by moderator2; 09-29-2009 at 07:05 PM. Reason: please do not post websites except as described in the Posting Policy

 
Old 09-29-2009, 05:43 PM   #3
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Re: Just need help...am freaking out

Good idea to journal my symptoms....so I don't forget anything. I will check out that book too. Thanks Heidi.....I'll try to keep calm until I get more answers. I just want to feel better (obviously).

 
Old 09-30-2009, 05:09 AM   #4
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Re: Just need help...am freaking out

DS, hi & welcome. Was your 1st test *only* an ANA test? It may be that the pattern just didn't come thru, for whatever reason. Patterns are usually specked, homegeneous, rimed, etc. You could ask if the missing pattern is really important (meaning your ds-DNA results are prob. the important part).

On your 2nd & 3rd tests, looks like ds-DNA was deemed "positive", right, and higher on the 3rd than on the 2nd? If you read the sticky posts at the top of the thread list, you'll see anti-ds-DNA is considered one of two autoantibodies considered very "specific" to lupus.

BUT just having anti-ds-DNA autoantibodies doesn't spell doom, even if you are formally Dx'ed with lupus. Speaking very broadly, lupus splits into "acute" (autoantibodies affect "major organs" like brain, kidney, heart, lungs, etc.) and "subacute". Main point is that there are multiple suitable treatments available for all severities of the disease.

I also think a new rheumie should weigh in, esp. since you have worsening pain & trouble breathing at times.

As to fearing you won't be taken seriously: After years of seeking help locally (many dermies & gastros & urologists, and finally a rheumie), I saw a teaching hospital rheumie, fearing I'd be rudely dismissed. I WAS SO WRONG, it's laughable; I got fast answers & real help. Absolutely there are drs. out there who can help; it's finding them that's the hard part, so please keep at it. Sending you my best wishes, Vee (also a fan of Dr. Wallace's book)

 
Old 09-30-2009, 11:32 AM   #5
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Re: Just need help...am freaking out

Thank you Vee
It's weird.....the ANA results came out the same both times (<1:40 and negative, but the choice screen says positive). I am hoping that this rheumy is a better choice. She actually comes from a University Hospital in Philadelphia so I'm keeping my fingers crossed. I am now wondering why the first doc wasn't concerned with my positive ds dna. He never diagnosed me with anything! I hope I can stop with this new doctor because dealing with my primary's office for referrals is not helping my nerves!!
I feel so much better talking to people who know how I feel.....I could actually just cry knowing that I'm not crazy.
Thanks again and I'm sure I will be here again soon!
Deb

 
Old 09-30-2009, 01:01 PM   #6
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Re: Just need help...am freaking out

Hi, just wanted to say I had to see the 3rd Rheumatologist to get a concrete diagnosis of Lupus. I had seen two who had just simply passed it off as Fibromyalgia without doing any labs to rule out Lupus. I know it is frustrating but I am certain that being persistent to find the right fit with a knowledgeable Rheumatologist is the lkey to feeling some better. I actually sought out my current Rheumie as he was considered a specialist in Fibromyalgia, but it was his persistence that led to my Lupus treatment. Sometimes it just takes a while to find the right fit. I am doing much better since seeing this doctor. I hope the same for you. I am one of the lucky ones that "does" have both FMS and Lupus, but I have to admit the FMS is responding to the Lupus therapy much better than any FMS treatments I had been subjected to. I know it is frustrating but try to hang in there.

 
Old 09-30-2009, 03:45 PM   #7
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Re: Just need help...am freaking out

I came back w/ "in-between" double-stranded DNA and w/ the other 3 symptoms, they dx me w/ Lupus. Like Veej said, it's pretty Lupus specific.

I went to the Rheumy thinking that I was going to be kinda laughed at because I was so mild, but he took me seriouslly.. Looked through ALL of my medical files for the last... 9ish years or so. Bloodwork that showed all negs to bloodwork that finally came back positive. Things he saw and thought were important were overlooked by my regular GP.

I hope you will get some answers and in turn some relief from this new dr. If not, keep looking... someone out there can help you. Don't loose faith.

 
Old 10-01-2009, 09:53 AM   #8
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Re: Just need help...am freaking out

Thank you all so much. You are making me feel better
I have an appt on Tuesday and I really hope I like her!! I am really wondering if I have asthma or not now. I have been having trouble breathing since June and was told that I probably have asthma. The more I read about auto immune problems, the more I think I don't have asthma!! I am keeping the faith

 
Old 10-02-2009, 03:32 AM   #9
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Re: Just need help...am freaking out

Deb,
i thought I was going nuts to, My doc found ceoliacs 9mths ago so I went gluten free but I did'nt feel any better (well a little better but not right) I went back last Saturday and he told me I have SLE the doc had seen something in my bloods and re tested and he found the answer to what was making me feel so tiered and feeling so much pain I am hoping that the drugs he has given me will help. I am sorry I can't give you any real info cause Im a newbie to. Hope all the vets out there can tell us both what to expect.
Tess

 
Old 10-05-2009, 09:26 AM   #10
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Re: Just need help...am freaking out

Thanks Tess. I go to the new rheumy tomorrow and am keeping my fingers crossed that she can tell me something....anything! I hope the meds work for you

Deb

 
Old 10-05-2009, 05:08 PM   #11
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Can somebody help!!!!

I am 24 yrs old... Over 1 year ago all of my symptoms started... My very first symptom was burning thighs whenever I walked... especially walking up the stairs....(now I can barely walk up stairs)... anyway... it slowly started getting worse... I then had a dull achy pain throughout my entire body... I sucked it up and told myself that it was due to working out the day before.... or lifting heavy things... or sleeping wrong. That was all in about 6 months..... then comes the scary part of it... From about 4 months ago till now, I am experiencing severe weakness from my neck to my toes, SEVERE shock like, stabbing radiating pain that lasts for no longer than 10 seconds.... then it wil be gone.... but it happens all day long. The stabbing pain can be anywhere on my body at any time of day...head, back, arms, hands, fingers, toes, thighs, knees, butt, armpit, chest, ANYWHERE!!! So If I am lucky I will have an hour that goes by with no pain at all... But in between the bouts of the "shock like pain" I will most def have the dull achy pain that stays with me 24/7.

Other symptoms I have are confusion, major dizziness or vertigo(not sure which)... Extreme fatigue... muscle spasms, pins and needles feeling, numbness in hands and feet...

It is a bit embarassing... I am so young... and the way I look when I get out of a chair, or my car is ridiculous.... I am so sore, and in so much pain, and feel so weak like my bones are about to break, that it takes a while to adjust myself to start walking normal after I get up....

Does ANYONE else have these problems?

I have been to so many doctors, and had so many tests done, that I feel like I am starting to go a little crazy because nobody can figure out what is wrong with me......


 
Old 10-05-2009, 06:05 PM   #12
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Re: Just need help...am freaking out

LQ....I don't have the sharp pains like you describe. I would suggest you find the nearest research/medical center and have a thorough work-up. Make sure you take all your lab reports, films, etc. with you. Good luck.

 
Old 10-06-2009, 05:23 AM   #13
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Re: Just need help...am freaking out

Thanks Heidi.. I have actually been talking to family about going to the Mayo Clinic in Minnesota!
I have gone to 8 specialist where I live... and none of them are helping me, or seem like they even care...
My quality of life is going down the pooper... I just need someone to help me figure this out! So off to the Mayo Clinic I go!

Oh... and If anyone has any other advice they would like to give on my previous post, please feel free!
Thank you all and God bless!

 
Old 10-06-2009, 06:57 AM   #14
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Re: Just need help...am freaking out

LQ, so sorry you've been having such problems and such difficulty getting answers. The pain I have/had seems different (sorry). In your shoes, I'd seek what you described = a whole diagnostic team capable of working together. Touch base when you can, OK? Wishing you good luck! With my best wishes to you, Vee

 
Old 10-06-2009, 05:57 PM   #15
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Re: Just need help...am freaking out

I think that is a good decision LQ. Keep us posted on your journey.

 
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