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Old 07-31-2012, 12:54 PM   #1
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25 year old, and doctor's are unable to pinpoint exactly what is wrong!

Hi everyone, I'm not sure if I'm on the right board, but any advice would be so very greatly appreciated. I'm a 25 year old mother to two young children. I'm very active and healthy. Our family eats extremely healthy (mu husband is a personal trainer) and I usually run 15 miles a week. A little over a month ago, I began feeling very ill. My muscles grew extremely weak and almost jittery, however it felt completely different than teh flu. I was very dizzy and my pupils were constricted for several days. I had high blood pressure when I went into the doctor a few days later (which has NEVER happened to me before). They did an EKG and I just had a "normalish" heart arrthymia. NOthing to worry about. They ruled it as stress and anxiety, and put me on a low dose of xanax. I told the doctor this was not the case with me but she insisted I give it a shot. Took the xanax. . nothing. Went back they ruled it only as stress this time. My symptoms during this first week and a half were shaky/weak muscles, stiff neck, dizzy, not very hungry, and my eyelid had a red scaly rash on it that swelled up. I also have been experiencing this one quarter shaped rash on my neck that flares up and itches then goes down. However for the last 4 weeks I have had jaw pain, swollen lymph nodes and headaches. No runny nose or sore throat. Right now they just have been trying different antibiotics on me to rule out a sinus infection. I'm miserable though. Soemthing just does not feel right. My neck feels so tight from swelling and even with antibiotics I have about 3 lymph nodes on my neck that have been there for about a month now. They don't cause any pain though. I'm getting very nervous. He recommends doing a CT scan in about a week if I'm not feeling any better. I can't feel this sick anymore. I'm exhausted and its a challenge to take go through the daily routine everyday. My insurance doesn't cover CT scans and I know I should, but if anyone would share their thoughts or symptoms with me into comparison I would be so thankful and grateful. I asked the doctor if he was concerned about it being Lymphoma and he said at this point no, but he can't rule it out yet. I should mention that I have had all my bloodwork done about a month ago when this first started and everything looked fine, I actually had a high red blood cell count, not too high I guess for concern. I also had an ANA test done because Lupus is very strong inmy family.

 
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Old 07-31-2012, 01:26 PM   #2
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Re: 25 year old, and doctor's are unable to pinpoint exactly what is wrong!

I'm glad you wrote in-welcome. I think you will find help here. First, your symptoms could certainly be from lupus, and the ANA test doesn't always come back posiitive early in the course. I would get copies of all my blood tests to see what all was measured, and look for anything flagged as H High or L low. There are lots of possible clues to lupus other than the ANA test. I would be concerned if your headaches are severe and your stiff neck accompanies them, especially if running a fever at all. Lupus can cause a sterile meningitis, which requires a spinal tap to diagnose. Lupus of course can cause bad headaches anyway, without meningitis. The muscle pain and weakness should be checked by running a CPK or CK test, which is a muscle enzyme elevated in lupus when muscles get inflamed (myositis). An elevated sed rate, CRP, low lymphocytes or WBC, high globulin, high monocytes can all be clues to follow up. You can post any abnormal labs if you'd like. What did they mean by a "normalish" arrythmia? I would get a copy of your EKG and report. Sounds like they were dismissing your symptoms by chalking it all up to stress. The ER doesn't like to delve into anything which may be chronic. They want to rule out emergencies and get you out of there. But if you think meningitis is possible, that is the place to go. If not,I would recommend an appointment with a rheumatologist, and sketch a family tree marking all who have lupus or any other autoimmune disease. You could go that route before a CT scan if you can get in in timely manner. Maybe a Dr who takes care of one of your family members will squeeze you in. Lymph node enlargement occurs in lupus, so I would initially suspect that over lymphoma.
Another approach is to get a skin biopsy with immunoflourescence (important to include) of the rash on your neck. Easier than eyelid! Also, notice if your rash or other symptoms worsen after sun exposure. Good luck! I hope you have access to a good rheum.

Last edited by ladybud; 07-31-2012 at 01:31 PM. Reason: modify info

 
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Old 07-31-2012, 02:07 PM   #3
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Re: 25 year old, and doctor's are unable to pinpoint exactly what is wrong!

Thank you so much for your post lady bug. I'm writing down everything you said to bring up at my next appt. Unfortunately we moved a few years ago from family, so there doctors would not be an option and I'm actually working on finding some good doctors myself. I have been told that about the ANA test before and am finding that as well but the 2 doctors I have seen do not want to do anything moer with it because of the percentage of patients who actual have lupus with the negative ana test results. However, my cousin was one of those individuals, who tested negaive until she had a flare up. I would suspect lupus over lymphoma as well, especially with all of my symptoms and strong family history, but I was nervous about my lymph nodes. The normalish EKG results I was told were a benign, and nothing to be concerned about. They diagnosed me with precordial catch syndrome, or at least told me I could title my heart issues with that. I have been suffering from random stabbing chest pain ever since I can remember. I use to be very concerned about it, but I guess it is kind of common. When it happens, it sure doesn't feel like something normal! Thank you, I think I will start there as well. I'm just concerned about this jaw pain I have been having. I was told today by the doctor I should visit my dentist to see about having a mouth guard made for night time sleep incase I'm grinding. I just don't understand how all of this is happeneing at once. It seems to me like the jaw pain in involved in the swelling of the nodes, my temple headaches too. Thank you again for your advice!

 
Old 07-31-2012, 02:30 PM   #4
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Re: 25 year old, and doctor's are unable to pinpoint exactly what is wrong!

The stabbing chest pain, if it worsens with a deep breath, may be pleurisy, another common symptom of lupus. It took my ANA ten years to turn positive after I had full blown symptoms, so it is worth repeating periodically as well as the other tests that can help. Also be sure to get a urinalysis done to check for protein and blood, another clue. The pleurisy rarely shows up on anything- it is a diagnosis based on description of symptoms, unless severe enough to cause a friction rub, heard with stethoscope, or an effusion between the pleura, seen on xray or CT scan. Good luck with your search. I wouldn't wish lupus on anyone, but if you have it, it is better to know so you can get on treatment and feel better!

 
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