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Old 11-12-2003, 11:05 AM   #1
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Question Could I have Lupus??

I know all you readers must be getting sick of analyzing people's symptoms, but I would appreciate any opinions you may have. I first started having problems about 3 years ago. I was experiencing extreme fatigue and joint pain, mostly in my hands and wrists. My primary care Dr. sent me to a rheumatologist who couldn't find anything wrong with me. All tests including ANA were negative at that time. Since then the joint pain has subsided for the most part, but I am still tired all the time. I can sleep for a whole day if given the chance and it is so hard for me to drag myself out of bed in the mornings. For the past two years, I have had a low white cell count on routine blood tests (not sure of number). Recently, my PCP sent me to a hemotologist who ran some other tests. My ANA is now 1:320, sed rate is 29, and proteins are elevated. They are now running additional tests for the proteins (amino fixation tests??). The hemotologist said that Lupus is a possiblity. I also have enlarged lymph nodes in my armpits and I often get an itchy rash at various locations on my body that is like small white blisters. When I scratch, I get little purple dots where the blisters were. Does anyone have any thoughts on all of this? My PCP wants me to go back to the rheumatologist so I guess that's my next step. Thanks in advance for any thoughts or ideas.

 
Old 11-12-2003, 11:27 AM   #2
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Hi cathy and welcome to the board

It really sounds like you do have Lupus. Your ANA is quite elevated too! Do you know what the pattern of your ANA was? (ex/speckled, centromere etc). A person's ANA can change on a day to day basis sometimes and we can be positive with the ANA when we feel the best. Lupus is an odd one thats for sure. I understand the lymph nodes and the fatigue. Its so hard to stay awake sometimes! Often we are misdiagnosed with fibromyalgia, chronic fatigue syndrome etc when really Lupus is the cause. Lots of us have doctors tell us that we are crazy too! That's only because they can't figure us out. It sounds like your symptoms and blood work are defintely consistent with Lupus. Have they tested you for Sjogren's Syndrome? They do blood work for it, but also they will put a small piece of litmus paper into the lower eyelid to measure the eye moisture. Sjogren's is a dry eye, mouth, nose, etc syndrome. I didn't really feel like I had dry eyes but I am "bone dry" on the moisture test! I yawn all the time, which is because I am trying to lubricate my eyes. Sjogrens goes with Lupus. Do you have problems with headaches, or have a history of stroke, DVT (leg clot) miscarraige or TIA (mini strokes)?

If you do have Lupus, this Rheumatologist that you will be seeing will hopefully recognise it and treat you. It seems that this is pretty cut and dry, many of us go through years of symptoms before finally getting diagnosed properly! I am sort of glad that your blood work is positive, that means that you can get on with life and be treated! If your blood work is negative, they try and write ya off sometimes! I hope that this helps you, and that you feel better soon. You can check out the symptoms of Lupus in this forum to see if yiou fit. I always recommend to people to go through all of they're health charts from over the years and look for "oddities" and pull them out to take to the Rheumy. Its good to be prepared when you go. Also, write a list of your current symptoms. It's good to go from head to toe and try and think of everything that is going on. I know that I get flustered when getting ready for an important appointment and keep a list of symptoms to discuss with the doctor. Take care!!

~Angelic

 
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Old 11-12-2003, 11:54 AM   #3
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Hi Angelic,

Thank you so much for the thoughtful reply! I don't know what the pattern of my ANA was. The next time I talk to the Dr. I will ask him. I haven't been tested for Sjogren's Syndrome, but I've read about it. I wear contacts and sometimes my eyes get so dry that they just fall out so maybe I do have it - another inquiry for the Dr. I don' have a problem with any of the other things you mentioned, but I do have Hashimoto's thyroiditis which I know is another autoimmune disease. If I'm diagnosed with lupus what kind of treatment do you think the Dr. would recommend since my major symptom right now is just the fatigue? They don't put you on steroids unless you're having a lot of pain, right? How about Plaquanil, what does that treat? Also do you know anything about the protein studies and what they indicate? Thanks again!

Cathy

 
Old 11-12-2003, 12:35 PM   #4
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Hi Cathy

The first line of defense with Lupus in someone that is in a real "flare" they use prednisone to stop the inflammation in its tracks. This will bring down the rash, kidney inflammation, reduce the ESR and ANA levels. It also helps us "Lupies" To feel a LOT better. You don't have to be put on a really high dose unless you are having really severe symptoms but even a lower dose to start can make a huge difference!

I noticed that my contacts would get really foggy and fall out too! I used contact drops to keep my eyes lubricated, but often my contacts would rip too. I stick to my glasses now. I think it is a good idea to get tested for Sjogrens. Interesting that you have the autoimmune thyroid stuff too, they can go hand in hand with Lupus!

If you do have Lupus, your doctor will probably start you off with the Plaquenil. Now, plaquenil can take up to 3 months to really start working, and it isn't for everyone. It will keep the immune system from attacking itself as best it can. It supresses it, and can work wonders! Your doctor may also put you on some Prednisone in the interm so that you can start to feel better. Prednisone can have some really dreadful side effects like hair growth on the face, a "moon shaped" face, weight gain or loss, round belly and distention of the belly too. It can cause mood swings and all sorts of fun stuff but that is usually on a dose greater than 30mg a day. I was on 80mg a day for about 2 months and it was awful. Once I got lower on the dose everything got better, side effect wise. But the benefits do outweight the side effects trust me. The first day I was on it I almost danced out of bed becuz for the first time I actually had no joint pain!

The protein question that you asked can depend on which test they did on you. The C3, C4 compliment test can be the one you are talking about maybe? If those levels are out they are majorly indicative of Lupus. Anything that is wacko having to do with the body can be related. I mean everything from anemia's to inflammation to EVERYTHING! It can be a real crazy disease, it attacks so much.

I never get sick of answering questions and helping out. I feel that if we can all become empowered with our health, then we can win and become smart.. when you know about what is going on, you can feel better and less scared. You take care!!

~Angelic

 
Old 11-14-2003, 10:17 AM   #5
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Hi Angelic,

Thanks again for all the info. I found out what protein test the Dr. is going to run. It is called protein electrophoresis. Are you familiar with this one? Also, my husband and mother-in-law think that all the abnormal test values are just the result of my Hashimoto's. Do you think this is possible? I have an appointment with the rheumatologist on Nov. 26th so it should be interesting to see what he has to say. One more thing, my WBC count was 3.8. Is this considered very low? Hope to hear from you soon.

Cathy

 
Old 11-14-2003, 09:33 PM   #6
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Hi Cathy

I can sure tell you about protein electrophoresis. If your levels are increased in certain components, then chances are that you have Lupus or something autoimmune. It depends on the globulins that are out of range. It would help me if you let me know the results when you receive them. Now, the ANA CAN be positive with Hashimoto's, but usually only in the beginning stages of it. I don't think that it is the WHOLE picture with you, but more of an "overlap syndrome" going on. When we have a tendancy to have one autoimmune disease, we can have other's at the same time. I have Lupus, Antiphospholipid Syndrome (the blood clotting disorder.. also known as sticky blood), Sjogren's Syndrome, Type 1 diabetes, Raynauds Phenomenon as well as B12 deficiency, Iron related anemia, GERD, Irritable Bowel Syndrome, wide spread inflammation of the stomach ETC. So see what I am saying? When you have one.. you can have many! So I think that the ANA is only part of the whole picture. What would be helpful is if you have the pattern of the ANA.. can you get a hold of it? Maybe you could call the doc and just ask for the ANA pattern of your last one.. that would be VERY helpful to me and I can further help ya

As for the WBC, a reading of 3.8 is considered low depending on the lab. Lab ranges differ depending on where you live. A lower than normal wbc count can be from an autoimmune disease. Do you have any of your urinary reports around you? I don't even need recent ones.. even older ones. If you could you let me know if you have had protein in your urine.

I think it would be a great idea if you could get your charts from now and through the years so that you can get a "picture" put together for the Rheumatologist. If you can pull anything abnormal it can help you lead to a correct diagnosis. If you would like, you can post those weird results here and I can help you out! Take care

~Angelic

 
Old 11-17-2003, 06:38 AM   #7
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Smile

Hi Angelic,

Thanks again for your reply. I feel like a real whiner with my measly symptoms when you have so much going on with your health. It is wonderful that you have such an upbeat attitude and are willing to help others! I am going to get blood drawn today for the "serum immunofixation electrophoresis" test. I've taken that right off the script so I know that's the exact name of the test. The Dr. also put a diagnosis of "hypoglobulinemia" on there. I've tried looking up these things on the net, but I think you're right about having to know which globulins are out of range before any determination can be made. All I can determine is that the test is for liver problems, cancer, or immune system disorders. I don't know what the pattern of my ANA is, but I will try to find out and let you know. I haven't had any urine tests in a while, but I was never told there was any protein in my urine. I'm having all my records sent to the rheumatologist so he can get a total picture of what's going on. I also have an extensive questionnaire that his office sent me in the mail to fill out and take in with me. Hopefully after I see him I will have some answers. Take care and I'll get back to you when I have some new info.

Cathy

 
Old 11-17-2003, 08:22 AM   #8
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Thats such a good idea Cathy! I am glad that you are having the records sent to the Rheumy. The HYPOglobulinemia means that your levels have been low in the past. I really hope that this Rheumy is good and can have you organized. You aren't a whiner trust me It's just so important to ask questions when you don't understand things.. that is taking charge of your health! I find that being positive keeps me going on this end. I am trying so hard to just going every day I like helping others with this stuff, if I didn't I think that the info would seep out of my ears!! Take care and thanks for the information! Sounds good about getting the pattern of your ANA. When is the Rheumy appt? Take care!

~Angelic

 
Old 11-24-2003, 09:59 AM   #9
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Talking Re: Could I have Lupus??

Hi Angelic,

Only two more days 'til I see the rheumatologist. I can't wait to see what he's going to say. I called my primary care Dr.'s office this morning
to make sure all my records were sent to him and they said yes they were. I haven't heard anything about the latest blood work, but I guess Wednesday will be soon enough to find out.

I went for an eye exam last week and I asked the Dr. if I could possibly have Sjogren's and she said no because it's usually very severe. She told me I have allegies and gave me Patanol eye drops which haven't helped that much. She's only an optometrist so maybe she doesn't know that much. I'd really like to have the Shirmer's test to rule it out though. Maybe the rheumy will want me to have it.

It was interesting to read the post about "your story". You sure had a rough time getting diagnosed!!

Anyway, hope you're having a good day today and I hope to have some new info. to share on Wednesday.

Cathy

 
Old 11-24-2003, 01:32 PM   #10
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Re: Could I have Lupus??

Hi Cathy!

I can't believe that your Rheumy appt is coming up so quick. I am so glad.. I really hope that they can get you figured out. It does sound like your Optometrist doesn't know what she/he is talking about... Sjogren's can range from mild to severe.. every person is different. I really hope that your Rheumy will do the tests for Sjogrens. Often they don't rely on the Shirmer's blot test- but it is the best one out there and fully reliable! I hope that this one is the one! I will keep my fingers crossed for you
I am doing okay on this end.. just resting lots Thanks for reading my story, I hope that it encourages all of you that there is someone else out there that has been there.
~Angelic

 
Old 11-25-2003, 12:19 PM   #11
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Unhappy Re: Could I have Lupus??

Hi Angelic,

I got a call from the rheumy's office yesterday and they switched my appointment to today at 2:00 and I just got back. The Dr. was a complete jerk! I would like to use stronger language than that but I want to be polite on this board. He upset me so much that I walked out on him in tears. He discounted all my blood work and symptoms. He told me that since I am able to "function", I should be grateful!! He said my fatigue is from working full time and taking care of the house and also could be related to my thyroiditis and depression (which I've been treated for for a long time, I don't know if I mentioned that previously). I agree that those things can contribute, but I don't think I would feel this terrible so much of the time from just that. He said that I should exercise more and I would feel better. I think as soon as he saw that I have a history of depression, that was like a red flag to him that I'm crazy and it's all in my head!! When I started to cry, he said that I can't have Sjogren's because I'm able to produce tears. When I told him that my hands hurt and go numb when I'm sleeping, he told me to sleep on my back. He also said that since I'm able to move my hands and clench them into a fist, etc. that the joint pain is nothing to worry about. I did find out that my ANA pattern is "homogenous" and that on the protein test there was several that were elevated. He said the abnormal ANA means nothing and that it could be from my thyroid and that the low WBC count and high sed rate are negligible. As far as the proteins go, he said the only reason for concern would be if one of them was really high it would indicate cancer. His whole motto is "If you're not on death's doorstep, you're wasting my time". I guess I will still go back to the hemotologist for my follow-up appointment in two weeks, but he'll probably just tell me the same thing. I'm just so upset that he didn't take me seriously at all. Oh well, I better get back to work. Thanks for listening to me vent. Do you think I should try find another rheumy? Hope you're having a better day than I am.

Cathy

 
Old 11-25-2003, 12:43 PM   #12
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Re: Could I have Lupus??

That's outrageous! I'm so sorry you were treated that way and yes, I do think you should find another rheumy.

Hugs.

 
Old 11-25-2003, 01:21 PM   #13
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Re: Could I have Lupus??

Hi Shaloop,

Thanks for your reply, it made me feel better! I think I'm going to try to find a rheumy that specializes in diagnosing and treating Lupus instead of one that just cares about and treats old people with arthritis like the one I saw today.

Cathy

 
Old 11-25-2003, 11:02 PM   #14
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Re: Could I have Lupus??

Hi Cathy,

Welcome to your first crappy Rheumatologist appt!! It really sucks that there are so many of them out there that write us off!! Grr. Your post is upsetting, and I have been thinking about you today. Please don't take to heart anything that he told you. You have the right to a second opinion and I hope that you can see someone that specializes in Lupus patients. For petes sake, you have the blood work and the symptoms of it!!!!

Please try not to be too discouraged, this happens to us "Lupies" all the time. It just means that you DONT want him touching you.. perhaps if he would have diagnosed you he would have treated you incorrectly. We never know! If it makes you feel any better, I saw about 6 Rheumatologists and had diagnosis' ranging from Fibromyaligia to Conversion Disorder (meaning that I am nuts!) before I was diagnosed correctly. Some of them are just idiots, and thats the way it is.

Just take that rotten appt, and throw it over your shoulder and move on There are good ones out there we just need to find them. You are definitely in my thoughts today- please try not to be too discouraged and for petes sake don't think you have to exercise LOL I also had a Rheumatologist tell me before I was diagnosed that I needed Orthopedic foot supports for my swollen feet.. he felt that the supports would be the answer to my problems! He also told me "You look too healthy to have Lupus". So I have been there, done that and I have the t-shirt and a sign on my head that reads "All crappy Rheumy's apply here". LOL One day you will laugh, trust me on that. Just head on to the next one, you are entitled to a second opinion. Maybe the Hematologist knows a good Rheumy that specializes in Lupus? Take care

~Hugs, Angelic

 
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