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Oh My, Why Is It So Hard To Get A Diagnosis?


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11 replies to this topic

#1 Janice

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Posted 21 October 2007 - 08:18 AM

Guys, I don't know what this means, but I had a positive ANA and a positive DNA antibody of 4.8. I have Raynaud's Phenomenon ... I get so cold that I think I am honestly going to die. My feet and hands feel like they are going to snap off if I move. Twice now I lost my bladder ... I had no control over it. I bloat very easily and heave 24/7. My legs turn black and blue. I had a vicious rash on my foot ... I break out in hives. First, the doctor said I had Scleroderma. Now, she's saying that she thinks I have Lupus. Oh my!!! My dermatologist thinks I have sustemic scleroderma which is diffuse. I have GERD, but no definitive skin changes in my hans. I have severe headaches and sometimes I can't even get out of bed.

#2 bookworm

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Posted 21 October 2007 - 07:53 PM

Hi Janice,
I feel for you! It sounds as if you are awfully sick! Are you taking any medicines to help you with any of this? Do you believe your doctors are experts in Scleroderma or Lupus?
One thing that is of prime importance is to have a doctor who knows about sclero (or Lupus.) I'd be sure I was seeing one and if you aren't, I'd try to find one right away!
I'm afraid I can't help with a diagnosis, but I will be thinking of you and hoping that you can get the help you need.
One of the few symptoms I share with you is the cold hands and feet and cold everything! Fortunately for me, I live in Texas and it is a very warm climate most of the time. But keeping warm is very important, whatever the climate! Lots of layers of clothing, gloves, slacks with wool socks or tights, warm hats -- all these things help a lot. I wear gloves year round to the grocery store because it's soooo cold in there! Especially when handling the frozen foods, I make sure to have my gloves.
I sleep with a heating pad or two! I also have my hot corn bags -- little 8" x 8" "pillows" filled with deer corn or rice or other grain and microwaved. They stay hot for a pretty long time and then you just microwave them again. I make mine out of scrap fabric. Email me if you like and I'll give you the directions. I've been known to sleep in a knitted cap. I've heard that 80 percent of your body heat gets out through your head! I always wear a hat outdoors when it's cold and a warm scarf around the neck is a good idea, too.
Please write again soon and let us know how you are doing. And please do make sure your doctors are experts in autoimmune disorders. You can find a listing, state by state on this site of experts in the field.
Meanwhile, please know that you aren't alone and that you can surely be helped to feel a lot better with the right medicines.

Mary in Texas.

#3 Gidget

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Posted 22 October 2007 - 09:11 AM

Janice
I agree with Mary. Make sure you are with a doctor that is a specialist in rhuematology -- preferably scleroderma. In my case, I was with one of the top 10 rheumatologist's in CT -- and even then, he refused to diagnose me correctly. His answer to everything was to take "advil". He never ran the ANA test or even looked at my nail capillaries even though I had Raynaud's and severe fatigue. I kept telling him that "something was wrong with me". In the end another rheumatologist diagnosed me quickly by running the ANA. I am glad that I was willing to not settle for a doctor who failed to diagnose the obvious. It has made the difference as in my case, the disease has been caught early enough. Best of luck. Gidget

#4 Janice

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Posted 22 October 2007 - 11:19 AM

Hey Mary, thanks for the response. My doctor is a Rheumatologist. The first time I saw her she diagnosed me, on the spot, as having Scleroderma. Now, as my blood work keeps changing, she thinks I have Lupus. I am on two kinds of meds now ... Plaquuenil and Pantoloc. I am also on Advair Asthma. I honestly had to laugh when I read about you being known to sleep with a hat on ... I have too in the past!!! I too sleep with a heating pad, have lots of blankies on my bed, carry gloves everywhere, etc. Thanks for all the advice and plz keep in touch.

Wow! Sure glad you changed doctors, Gidget. I understand that this disease is difficult to diagnose, but this is driving me nuts.

Mary, I'm new to this site and really don t know how to e mail you. I would really like to get the directions on how to make the corn bags. I live in Newfoundland Canada and it is freezing here. We had snow flurries last week and I am about to die from the cold ... lol. Thanks again.

#5 bookworm

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Posted 22 October 2007 - 12:54 PM

Hi Janice,
I shivered just reading about snow! It dropped to 56 degrees F (about 13.3 C.). here today and I thought I'd freeze! My hands have been cold all day and I'm sitting here typing in a coat! Yesterday it was 91 degrees (32.7 C). It's these drastic changes that are hard around here!
By the way, you can make a quickie corn bag by just putting the corn down in a sock and tying the end. Microwave it for about a minute or two -- till it suits you. Of course, you could also put rice or another grain in the sock.

Mary in Texas

#6 janey

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Posted 22 October 2007 - 04:16 PM

Janice,
I live in the southwest USA and stay cold all the time I can't imagine what you are going through in Newfoundland. Please try the rice bags. When Mary posted that idea last winter, I tried it (with dried pinto beans) and it works great!

ON one of our support pages I found that there is a scleroderma center in Nova Scotia. I'm not sure how easy it is to get there from where you are, but it sounds like it might well be worth it. You definitely needs to have specialist check you out.

Stay warm with lots and lots of layers. Silk and fleece are great. Flannel is great to sleep in. Please keep us informed on how you are doing.

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#7 Kamlesh

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Posted 22 October 2007 - 05:17 PM

Hi Janice,

It looks like you need immediate help. I am sorry to see you in this situation. It is not uncommon to miss diagnosing scleroderma. My symptoms started in late nineties. I had positive ANA, high SED rate, some GI as well as lung involvement, but minor skin involvement. My doctors thought it was MS or Lupus and ruled out both. I started serious feeling skin involvement in 2004 and was finally diagnosed with Scleroderma. By this time, scleroderma had damaged my esophagus and lungs.

I hope you can find accurate diagnosis and start treatment immediately. Scleroderma can be managed with appropriate medications. I used to take Cellcept (waiting to restart when my WBC comes back in normal range) and take Nifedipine for Raynaud in winter months only.
Kind regards,

Kamlesh


#8 truman

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Posted 22 October 2007 - 09:09 PM

Janice:

If you're breaking out in hives, are you presently taking medication? Since I was diagnosed (not really...still don't know if it's Lupus or not), I have frequently become allergic to medications that I had taken in the past. Some medications up to two weeks ago, cause a tremendous allergic reaction. My doctor says it's all part of the auto immune condition turning against our own bodies. Losing your bladder? Why, because it was so cold you didn't realize, or just letting go.

I have found you can't leave it up to your doctor if you are not happy and do not feel in your heart the diagnosis and/or remedies provided.

Only you know your body, stand direct with your doctor and show that you are not willing to except "maybe it's this or maybe it's that"; you are not a guinea pig out for test, you are an individual who wants and needs information and results.

My thoughts are with you, please call and see your doctor immediately and keep us updated as to the results.

Tru
Tru

It is what it is...........

#9 truman

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Posted 22 October 2007 - 09:12 PM

Mary:

What are the corn and rice bags for?

Tru
Tru

It is what it is...........

#10 Janice

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Posted 22 October 2007 - 11:26 PM

Thanks for the link ... Nova Scotia is only an hr and 30 min plane ride from here.

#11 Janice

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Posted 22 October 2007 - 11:27 PM

Thanks for the kind words.

#12 bookworm

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Posted 23 October 2007 - 06:06 AM

Hi Tru,
The corn or rice or bean bags are to keep you warm. They are little pillows full of the grain and you stick them in the microwave for a minute or two and they are deliciously warm. You can snuggle your hands into them or put them on your feet or wherever you like. They feel good on aches and pains, as well as keeping cold hands or feet warm.
I can send you directions for making them if you'd like. Aso, if you don't sew, you can put corn or beans or most grains into a sock, tie the end and microwave that. The grains, heated, put out a moist heat that feels wonderful. You can take these in the car or anywhere you go and they help keep you warm. I am about to be gone all day, but if you'd like the directions for making the corn bags, pm me and I'll send you the directions tonight.
By the way, how is your toe coming along?

Mary in Texas