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Old 04-08-2008, 09:13 AM   #1
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KatieJane HB User
Do I have an autoimmune disease?

In 2002 and now in 2008, my ANA was tested. I have a positive ANA, with a titer of >640, speckled pattern. I had every other blood test known to man done by a Rhuematologist...everything else came back negative, except for slightly low vitamin D, elevated c-protein. Therefore, this rheumatologist said he was stumped, so he sent me to National Jewish to see their rheumatologist yesterday.

This doctor said I do not meet the profile of any autoimmune disease, based on blood work, but I do based on symptoms. Basically, she said that was all she could do for me. Oh, and that she says I have fybromyaligia and should she a pulmonologist for the cough.

My symptoms are as follows...fatigue, muscle soreness, chronic sinus infections, catch everything and take forever to get over them, recent diagnosis of asthma, testing positive to 73 out of 77 allergens tested for, hip pain, and a cough that is into the fourth month. I also am lactose intollerant, and have allergic reactions to numerous drugs, ie., penicillin, codeine, morphine, sulfa, etc.

I left National Jewish more confused than ever...do I just ignore all of this, see someone else, or what? Any suggestions?

 
Old 04-08-2008, 11:56 AM   #2
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rachelle01 HB User
Re: Do I have an autoimmune disease?

Katiejane:

Is your ANA 1:640?? you say speckled pattern? if so, you certainly have an autoimmune disorder..I have Sjogrens & lupus mix and have learned alot over the past 20 years. I have been to the top hospitals as well.
Not sure why your doc doesnt think you have something like lupus? what are your symptoms?

Rachelle

 
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Old 04-08-2008, 11:59 AM   #3
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rachelle01 HB User
Re: Do I have an autoimmune disease?

oopppps..sorry, didnt see your symptoms below.....maybe lupus, dry eyes and mouth would be sjogrens syndrome..

Best to try and get another rheumatologist opinion...several if necessary.
Something other than fibro is def going on there..

Rachelle

 
Old 04-09-2008, 04:27 PM   #4
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KatieJane HB User
Re: Do I have an autoimmune disease?

Rachelle:
Rheumatologist from National Jewish has written me off...says I do not have an autoimmune disease. My allergist says she is dead wrong and he will have me see yet another rheumatologist. Today the additional blood work came back...all normal except for something to do with muscle tissue was high. Also received my chest CT results...normal abnormalities...except a aneurysmal dilatation of the ascending thoracic aorta measuring 3.6 cm transversely and a rim-like mass which projects posterior to the right thryroid lobe in the lower right side of my neck, measuring 13cc in diameter. So now I am scheduled for an ultra sound of my neck.

However, none of this explains my chronic cough or ANA of 640, etc. I am puzzled as to why my ANA can be this high, yet two rheumatologist say it is nothing. Is this what most people face until the hit upon a diagnosis?

Kate

 
Old 04-13-2008, 10:32 PM   #5
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blueeyes62 HB User
Re: Do I have an autoimmune disease?

Katiejane,
You sound just like me. I have had allergies since I graduated high school in 1981 an I have had asthma for about 4 or 5 years now. I too was tested for lupus a few years ago because my joints ache all the time and I am also very fatigued. My ana test always comes out positive, but when they do the other tests for lupus they always come back negative. I saw a rumetologist and she told me that I have fibromyalgia. I also have had a bad cough since the beginning of Feb. and it still is with me. When I get sick too it takes me for ever to get better. I am also allergic to everything and I am allergic to sulfa, naprosyn, prendisone. I just had a complete phsical not to long ago and my doctor said that I have mild anemia, si I just had another blood test and he said that I also had white cells in my urine, so I had that test done again, but I didn't get any results. I had also just lost my mother to stage IV Lung Cancer. She didn't have really any symptoms of Lung Cancer, but when she was diagnosed in 9/06 she had many tumors in her brain. She had a massive stroke in May 07. She bounced back okay for a few weeks and then she started going down hill and passed aw 7/07. It has really been hard for me, because she was my best friend. We were with each other everyday and did everything together. I also forgot to mention to you that I have a histor of sinus infections and I am always on antibiotics. I also had 2 operations on my sinuses, because I had polyps and also had to get my sinuses drained. Every single day I have a stuffy nose and I can't breath right. I am always sniffing. Well I think that I better try and get some sleep. Take care. Hope to hear from you soon.

 
Old 04-14-2008, 10:06 AM   #6
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KatieJane HB User
Re: Do I have an autoimmune disease?

We do have a lot of the same symptoms! Last week I returned to National Jewish and had the most complete exam I have ever had. Today I am scheduled for a full pulmonary function test, tomorrow I will repeat allergy skin testing, and I am awaiting the scheduling of a bronchoscopy procedure. They also took seven more tubes of blood. All I have heard so far is that my vitamin D is very low, and I did an eight week course of pills for this, then start taking a normal dose for life.

I also went through my chart with a fine tooth comb (from my family doctor). I had a lesion frozen off my wrist and arm, and one on my chest biopsied in June of 07. I was told it was benign, nothing to worry about. Well, the rest of the report stated slightly elevated melanin and presence of rare chronic inflammatory cells. I have now brought this to the attention of my family doctor and the one at NJ. I also have an appointment next week with a cardiologist.

I have never seen so many doctors in such a short period of time. What did it take for you to get a diagnosis? I find it interesting that when I was put on a muscle relaxer for the fybromyalgia, my cough got better. The report from the ultra sound on my neck will be in tomorrow.

Guess it will take a while longer and I just need to be patient. I wish they could give me something to give me an energy boost!!

Thanks for the correspondence, it helps to vent this in writing.

Kate

 
Old 04-14-2008, 10:33 AM   #7
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KatieJane HB User
Re: Do I have an autoimmune disease?

Rachelle,
I received a phone call while I was writing my last reply and totally forgot to write something...

I am so sorry about the loss of your mother, please except my condolences.

Have you had your cough checked out? I have had mine since December. I was diagnosed with asthma, but the pulmonologist says she doesn't like what she hears on the left side of my chest, therefore, I am having the bronchoscopy.

Keep me informed.

Kate

 
Old 04-18-2008, 06:43 AM   #8
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rachelle01 HB User
Re: Do I have an autoimmune disease?

I would find another rheumy...just because you pass alot of those tests, dont mean anything....Im fine with the lungs, kidney's etc, but, if the immune system keeps attacking those organs, wont be for long. A high
ANA and alot of the other symptoms can qualify a diagnoses...not just the fibro thing...I liked the Cleveland CLinic...Everytime I go to a new doctor, Im diagnosed with something different..and the labs come of different too..Its just amazing..just keep trying to find the right doctor..good luck

Rachelle

 
Old 05-02-2008, 08:07 AM   #9
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tiff-cher HB User
Re: Do I have an autoimmune disease?

Hi all...I too have been diagnosed with Fibromyalgia, which was suspected for many years. In the last year I have been diagnosed with a collagen disorder, with my doc saying I am "immuno suppressed" I had one ANA elevated at 8 I think..and everything else is normal with my Sed Rate being slightly elevated, it has been 16, 22, 22 and the last one was 26. I have the Lupus rash on my face but he says it is not Lupus. He also said that all of my organs still "look good". I have seen several doc's lately too...my pcp is an internist, but I have been referred to a Urologist which ran every test you can think of for chronic UTI...one was no fun at all.....Monday I am going to see a Gyno. to see if I am a canidate for a hysterectomy...due to VERY irregular periods, which have been that way since the birth of my daughter in 1988!!! I had my tubes tied then too. But it seems to be worse in the last year. I won't go into my whole menstrual history..lol. I am on SEVERAL meds 4 of them are new in the last 2 weeks or so, and a 3 month round of antibiotics for the UTI's....I have Osteoarthritis in my left knee...no fun...I have had 5 injections in it since December, I could go on and on with symptoms. Back to the gyno...my reg. doc said if I had the hysterectomy all my other symptoms would get better. Oh, I also had a Lumbar Laminectomy in 1998, and now I have lumbar and cervical disc disease...Like I said I could go on and on and this board is the perfect place to vent!!! So now I am basically going from day to day and sometimes barely making it to my next follow up visit with the doc.... I do have one new thing going on, and I don't know if maybe it is tied to the new meds. I have extreme weakness in my legs...it progresses during the day but by the end of the day I can barely walk out to my car. Maybe I need to get my sed rate tested again...who knows.
My kids are grown and are both married, I have one grandbaby that is 2, I just worry that I won't be able to do a lot of things, my family is very close and my hubby is very supportive. We have a very active family, and since my back surgery somethings have slowed down for me, or I have to be careful....I am a young grandma and I want to be able to enjoy my growing family...sorry I'm babbling, or venting. It feels good to get it off my chest. Good luck to you both and wish me luck too...this board is where I have found some of my angels!!

 
Old 05-14-2008, 07:44 PM   #10
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mmee HB User
Re: Do I have an autoimmune disease?

katiejane,
I also have high ANA and looking for a diagnosis. Mine is 1:640 for both homogenius and speckled.
But I wanted to ask something, if this does not sound too off the wall, I saw that your vitamin D was low. Have you ever had your serum calcium checked? I have been reading online through endocrine journals about a possiblity of autoimmune parathyroid disease. Now I don't think that the antibody has actually been found yet, at least I have not found it online, but if your vitamin D is low, it may not hurt to see where your calcium is.
I hope that everything works out.
mmee

 
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