Negative ANA ...But I do have Scleroderma?

Aggie2
  • By Aggie2 · December 23, 2009 at 1:48 pm · 18 replies
  • In Systemic scleroderma
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Has anyone experienced a negative ANA but have all the symptoms and physical appearances of Systemic Scleroderma? My rheumatologist examined me when my feet and lower legs were all purple, my skin is very hard and shiny. He said I have it in my arms, too. They are very leathery and stringy feeling, and on my upper chest. My fingers were purple and I have the spider web red blotcy skin. And if you have experienced this did you get a skin biopsy to determine a diagnosis?

I feel a little guilty about what I said to my doctors nurse when I called for the blood work results.
He told me basically every thing came back normal. I said to him if you use the word basically it means something came back not normal, right? He told me well you have a little protein in your urine and couple other items were a little elevated. And I said, "So you are saying I am perfectly healthy? " I have had so may people ask how my blood work came out and we all know how difficult it is to explain what scleroderma is and then to be told the tests are negative?!?!?!

I am totally frustrated. Number one I don't want to be treated for something I may not have. And I am wondering if anyone else has gotten false negatives like I did with the rheumatoid arthritis?
Any help will be apprecitated. Thank you

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18 replies   

I-Care

Dear Aggie2,

From what I have been told, the ANA test is part of the diagnostics along with other blood work, and physical exam to determine if and what type of autoimmune disease we have. Sometimes its negative when you have an autoimmune and sometimes its positive when you dont have an autoimmune. This has been confusing to me for the past 8 years. Originally 8 years ago I had a very high ANA titer and still had trouble getting a correct diagnosis. One Dr. said I had Chronic fatigue and fibromyalgia, then another said I had PSS, then another possible lupus, then one said I did not have an autoimmune, then one said I had Rheumatoid Arthritis, then again another lupus diagnosis, and the finally I have been told after 8 years that I have CREST/Scleroderma plus fibromyalgia. To be quite honest, I cant be for certain which autoimmune disorders I have. They all seem to overlap, and I have symptoms of all of them. Maybe I am a melting pot. Well my latest ANA last month was borderline normal, and that has got me to thinking if my disease is in remission. But the Dr. said not to go by this test. I am trying to be optimistic. At the present I still have a lot of pains all over, Chronic fatigue, sleepless nights, swelling in joints, shortness of breath to name a few. I have been fortunate at this time that I show no organ involvement, so I hope the worst is over. From reading about autoimmune disorders they are very similar with similar treatments. I feel like you do , that you dont wont to take medication or treatment for something you may not have. What I have been doing all these years, is to treat the individual symptoms as the appear. I have not taken any strong immune suppressant yet because I have no organ involvement. I see no reason to add more fuel to the fire unless necessary. Since you did say your Dr. said you have protein in your urine, I would definely get a second opinion. You need to rule out any kidney involvement since you have autoimmune issues. Also dont feel guilty about asking your Drs. lots of questions, and getting second, third or forth opinions. We all need to be proactive in our health care. If the Drs. dont want to help us, we can certainly go elsewhere. Wishing you the best always. Wishing you love and peace for the holidays and always.

I-Care

M_McF_M

There are a lot of people who have scleroderma who never have a positive ANA. It doesn't mean you don't have it. You know that, just look at your symptoms. Doctors who see more scleroderma patients are familiar with this presentation. You may just need to find another doctor. Scleroderma can be effectively treated with antibiotics. If you'd like to know more, I'll be happy to share with you.

SillySally

All my tests are negative! I also have protein in my water. My Rhuematologist thinks it's Sclero as I have so many symptoms both inside and out but he won't diagnose me while the blood work is negative. So frustrating because I'm positive that I have it and I want to be treated so I can get well!

Merry Christmas!

1Lauren

Hi Aggie2
I agree that you should have the protein in your urine treated-sooner rather than later. You don't want to lose Kidney function! I don't know why your Dr. is being so vague, but you have the right to see your test results. I would ask the office to send you a copy of all your lab results so you can see them and maybe have someone else (primary care DR.?) explain them to you. It seems so many people have a hard time getting an accurate diagnosis, I think it would be worth your while to get another opinion. I wish you all the best!

sea2adm98

All of my lab tests are also normal, but I have been dx with SD based on shortness of breath with exertion, hands are swollen and tight, skin is tight on forearms, neck, upper chest. Luckily, PFTs, CT, EKG, barrium swallo test have al been normal. I had high trace protein at one point and my doc immediately had another urine test done which came back normal. If that was abnormal, my doc was going to start me on an ace inhibitor to protect my kidneys.

Aggie2
  • By Aggie2
  • Reply 673840 · In reply to 673166 by I-Care
  • December 24, 2009 at 2:04 pm
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Thank you for your input. I really appreciate how much everyone does care here. It is a lonely thing to be afflicted with when other don't understand. My kidney issues are from the very strong medication I am on for the Blastomycosis (fungal Pneumonia) I had in August. Blessed Christmas to you and yours,

Aggie2
  • By Aggie2
  • Reply 673844 · In reply to 673174 by M_McF_M
  • December 24, 2009 at 2:08 pm
  • Report post

Thank you for your response. My doctor did say I have systemic scleroderma. lt was his male nurse that said I didn't have anything to worry about. I guess he has never been there or done that, if you know what I mean. Thank you again, Merry Christmas!

dallen227

I just joined so this info. may be a little late. My ANA was high at first but then keep coming back normal. I did have a biopsy done and the results came back S.S.

Aggie2

Thank you dallen, I am actually comforted to hear other have had negative ANA tests and still gotten a diagnosis so we can be treated. I was worried all the things that were happening to me was in my head. Well, it hasn't taken very long and people just have to take one look and see the changes. Thanx for responding.

milbank
  • By milbank
  • Reply 810739 · In reply to 673174 by M_McF_M
  • March 30, 2010 at 9:40 am
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My husband was diagnosed with scleroderma 18 months ago --he is on Tracleer and Revotio along with Ucloric and high blood pressure meds. His fingers / hands are stiff and difficult to move-he has the calcium deposits on the joints-and the pain in the hands is terrible--I have read some posts and they are talking about AP therapy?what is that? photopheresis? cellcept?. He is having a difficult time eating due to the mouth tightness. He sees a kidney specialist along with lung and heart and all is well there-but it is scary when he needs help with putting on socks,buttoning shirts,taking off sweat shirts-can't squeeze toothpaste-ketsup bottles-little things that I take for granted. The itching of the back is terrible-dry skin. Quess I just need reassurance-there is no support group here and am so grateful that I have found this site.

Aggie2
  • By Aggie2
  • Reply 811492 · In reply to 810739 by milbank
  • March 30, 2010 at 5:21 pm
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Hello milbank,
Sorry to hear things are getting so tough for your husband and ultimately you too. AP stands for antibiotic protocol. It is an antibiotic therapy that has worked for some people to bring them into remission or at least stopped the progression of this disease. To get the best information about AP go to the website rbfbb.org, The Road Back Foundation can answer just about any question you have about it and can help refer you to doctors. As for photopheresis and cellcept I do not know a lot about them but if you enter the words in browser line you will get a lot of info. Also ask your doctors about what they do. If there is any disease that needs aggressive attention sclerocerma is it. I encourage you to do some research, God bless

sjmcquade

i'm having the exact same problem , my bloods have been getting done for 4 yrs and i get a weak positive result i have esophagus ,problems ,bowel blocking raynaud's tanglers through it sound more like crest i have been told i'm a case book of correct symptoms but still undiagnosed,
did you got any answers yet or help i'm going round in circles

Aggie2

Dear sjcmquade, Yes they did diagnose me with systemic scleroderma from the physical symptoms. I had very purple feet, hard shiny calves, hands with raynauds and the CREST symptoms. With a certain number of physical signs they should be able to give you a diagnosis. I was told at Mayo Clinic that a very significant number of blood tests come back with a false negative. (Some times I wonder why they bother with blood tests.) I tested negative for Celiac Spru but know I have it because they did a small bowel biopsy, I tested negative for Rheumatoid Arthritis but know I have it because they did MRI's of my hands. I tested negative for Scleroderma but know I have it because of all the physical symptoms. I tested negative for Ocular myesthenia gravis but know I have it because of the specialized testing they do at Mayo in Rochester. Go figure, eh? I think you need to find a doctor who is willing to take this seriously. If you have the courage you might ask your doctor what exactly does it take to get a diagnosis and maybe ask why can't you at least get the symptoms treated. And if that gets you no where, ask them for the name of a doctor who does know something. I found that if you stand up for yourself they give you more respect. There is one thing that many doctors don't want to admit.....that is. they don't know the answer and rather than admit that they actually sacrifice your health by doing nothing. I have been treated with methotrexate and prednisone. Not good for me. Then I was put on prednisone and Plaquinil. and then prednisone and penecillamine. All of these gave me problems so I opted to go for AP (antibiotic Protocol treatment). I am still on the prednisone but hope to eventually get weaned off of it in the not to distant future. To get more information on the AP Protocol or to find a doctor who would help you with it contact The Road back Foundation, (rbfbb.org). There you will find a lot of information which may help
you. Good luck and God bless.

sjmcquade

thanks aggie ,sorry i took so long to get back to you
i have asked my G.P to send me for a second opinion ,through another rheumatologist,she was quick narky about doing so?
i think you quiet right about standing up for yourself it our life these people are dealing with not theirs.
i'm going for more study including 24hr PH and swallow test will get back to you on this!
The hole thing about this disease if a fight for result and for living ......no wonder we are exhaust all the time(lol)
take care of you
(sjmcquade)

sjmcquade

still haven't had ph study back got my appioment fro rheumi next month let you know how it gose

Butterfly62

i recently joined this so I hope you still check on your discussion. I've had more negative ANA Results than positive but like you have the visable and not visable affects. Even though my ANA was negative, I still have a positive SCL 70 and very elevated ESR. I hope you have a Rheume experienced with SD. bEST Wishes

Aggie2
  • By Aggie2
  • Reply 924987 · In reply to 924861 by Butterfly62
  • June 14, 2010 at 9:23 pm
  • Report post

It's been a while since I responded to a discussion but it is time I got back in the loop. I do have a good rheumy and nephrologist, thank you.

redwood

This website lists the American College of Rheumatology criteria for systemic scleroderma. http://emedicine.medscape.com/article/331864-overview

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