Discussions By Condition: I cannot get a diagnosis.

Doctor says "thinks" knows whats wrong

Posted In: I cannot get a diagnosis. 14 Replies
  • Posted By: frustrated9967
  • October 14, 2008
  • 11:58 AM

Well went to see my Rhuemy last week and she is sure I have Anti- synthetase Syndrome with overlapping Systemic Scleroderma and Myositis.

I had a EMG which showed onset Myositis with unknown cause. What is that supposed to mean???

I will be either starting cytoxan or doing IVIG, which ever the Anti Synthetase Syndrome specialist recommends for me. My Rhuemy feels the cytoxan would help me most as I have eye involement as well.

So we will see what happens. Really dont like being on toxic meds with just a "thinks" knows whats wrong diagnosis.

Terri

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14 Replies:

  • Any suggestions on which would be a better treatment, the cytoxan or the IVIG?
    frustrated9967 12 Replies
    • October 14, 2008
    • 11:43 PM
    • 0
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  • What are your symptoms?
    Nutritionist7 16 Replies
    • October 14, 2008
    • 11:54 PM
    • 0
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  • Here is a copy of the first post I did on here. Has all my symptoms. Well I am a 41 year old married female with 3 teenage daughters. I have been suffering for almost 3 years now. I have had every blood test done known to mankind including non commercial genetic tests. I have had MRI, cat scans, nuclear scans, pft, echo cardiograms, stress tests, and have had no conclusive results. My Rheumy says I have Anti Synthetase Syndrome with over lapping scleroderma, Polymyositis, dermatomyositis, myositis, ILD, chronic polyarthritis, and Raynard's. Meds I am currently on. Methotrexate .9ml injections weekly, Plaquenil 200mg twice a day, Medrol (steriod) 8mg in am and 4mg at night, folic acid 1mg daily, liposin (blood pressure med) 5mg daily, inhalers, home oxygen 3.5 liters. Here is a list of my symptoms:1. severe fatigue2. severe muscle and joint pain3. swollen muscles and joints4. mechanics hands (rough thick skin on knuckles and palms) elbows,knees and feet.5. muscle weakness6. shortness of breathe and cough7. eyes get extremely red and almost like a blister over my eyes off and on, when eyes flare very painful and sore and dry.8 GERG9. IBS10. High protein in urine11. photosensitive. when in sun or heat develop red, raised blotches that burn and itch.The meds I am taking started out working on some of the symptoms, but now seems to be wearing off injection only seems to work for 2 days now and not as well with the swelling and pain. Doctor wants to do a EMG on Monday morning and possibly switch me to cytoxan or IVIG treatment. Its very frustrating getting all the tests done with nothing coming back positive other then severely bad PFT (pulmonary function test) and being put on all this toxic medicine without a conclusive diagnosis.
    frustrated9967 12 Replies
    • October 15, 2008
    • 00:25 AM
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  • here is the link to the first post I did with all my symptoms and tests done. http://forums.wrongdiagnosis.com/showthread.php?t=33738
    frustrated9967 12 Replies
    • October 15, 2008
    • 11:49 AM
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  • What are your symptoms? Well I have a few of them 1. Severe Fatigue2. Severe muscle and joint pain3. muscles and joint swelling4. eyes become dry very red and I get what is like a water blister over my eye ball.5. mechanics hands, elbows, knees, chest, ankles and feet6. muscle weakness7. shortness of breath and cough8. high protein in urine9. GERG10. IBS11. ILD12. photosensitivy
    frustrated9967 12 Replies
    • October 15, 2008
    • 06:30 PM
    • 0
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  • Your symptoms can have other answers, of course, but if the IVIG helps that will give more clues to what you have. I understand your reluctance to taking medications without a definite diagnosis. Did you ever check out Lyme disease? I think you wrote on another post about your symptoms, or am I wrong? If you haven't checked the Lyme sites, here they are... CALDA - California Lyme Disease Association and Lyme Disease Network It just can't hurt to be the most informed about your own health as possible. Keep us informed and good luck.
    Anonymous 42789 Replies
    • October 15, 2008
    • 09:06 PM
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  • Are you taking any sort of supplements either vitamin/mineral or herbal?
    Nutritionist7 16 Replies
    • October 16, 2008
    • 10:00 AM
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  • Are you taking any sort of supplements either vitamin/mineral or herbal? Yes, I take daily vitamins, I have all my life.
    frustrated9967 12 Replies
    • October 16, 2008
    • 10:15 AM
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  • Not all vitamin/mineral supplements are equal. May I ask what brand you are taking?
    Nutritionist7 16 Replies
    • October 16, 2008
    • 06:23 PM
    • 0
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  • Here is a list of my symptoms: 1. severe fatigue2. severe muscle and joint pain3. swollen muscles and joints4. mechanics hands (rough thick skin on knuckles and palms) elbows,knees and feet.5. muscle weakness6. shortness of breathe and cough7. eyes get extremely red and almost like a blister over my eyes off and on, when eyes flare very painful and sore and dry.8 GERG9. IBS10. High protein in urine11. photosensitive. when in sun or heat develop red, raised blotches that burn and itch. The meds I am taking started out working on some of the symptoms, but now seems to be wearing off injection only seems to work for 2 days now and not as well with the swelling and pain. Doctor wants to do a EMG on Monday morning and possibly switch me to cytoxan or IVIG treatment. Its very frustrating getting all the tests done with nothing coming back positive other then severely bad PFT (pulmonary function test) and being put on all this toxic medicine without a conclusive diagnosis. Hi Frustrated, (and no wonder you are!) My question may seem simplistic, but, how much water do you drink daily? Most of your symptoms are signs of chronic dehydration. Please see my article: http://www.bellaonline.com/articles/art20175.asp I also suspect you may have hypochloridia, or low stomach acid, which can lead to many of your symptoms. Here is another of my aricles: http://www.bellaonline.com/articles/art11527.asp Because chronic deydration can cause GERD, this would not only explain your GERD (among your list of other painful symtpoms) but your cough and shortness of breath as well, as these are also symptoms of GERD. I would also ask you about sugar cravings? SL
    mindandbody 3 Replies
    • October 16, 2008
    • 07:27 PM
    • 0
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  • Not all vitamin/mineral supplements are equal. May I ask what brand you are taking? I take Centrum Performance and B12
    frustrated9967 12 Replies
    • October 16, 2008
    • 10:53 PM
    • 0
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  • Hi Frustrated, (and no wonder you are!) My question may seem simplistic, but, how much water do you drink daily? Most of your symptoms are signs of chronic dehydration. Please see my article: http://www.bellaonline.com/articles/art20175.asp I also suspect you may have hypochloridia, or low stomach acid, which can lead to many of your symptoms. Here is another of my aricles: http://www.bellaonline.com/articles/art11527.asp Because chronic deydration can cause GERD, this would not only explain your GERD (among your list of other painful symtpoms) but your cough and shortness of breath as well, as these are also symptoms of GERD. I would also ask you about sugar cravings? SL Hi SL I drink on average 4 to 6 20oz bottles of water a day, 2 glasses of milk a day. I have no sugar cravings. I dont have chocolate cravings at all, infact I rarely eat chocolate. I use a small amount of sugar on morning cereal. As for lyme testing, I have had several commerical as well as non commerical tests done and has come back negative. Thank you for your replies. Terri
    frustrated9967 12 Replies
    • October 17, 2008
    • 00:23 AM
    • 0
    Flag this Response
  • Here is a copy of the first post I did on here. Has all my symptoms. Well I am a 41 year old married female with 3 teenage daughters. I have been suffering for almost 3 years now. I have had every blood test done known to mankind including non commercial genetic tests. I have had MRI, cat scans, nuclear scans, pft, echo cardiograms, stress tests, and have had no conclusive results. My Rheumy says I have Anti Synthetase Syndrome with over lapping scleroderma, Polymyositis, dermatomyositis, myositis, ILD, chronic polyarthritis, and Raynard's. Meds I am currently on. Methotrexate .9ml injections weekly, Plaquenil 200mg twice a day, Medrol (steriod) 8mg in am and 4mg at night, folic acid 1mg daily, liposin (blood pressure med) 5mg daily, inhalers, home oxygen 3.5 liters. Here is a list of my symptoms: 1. severe fatigue2. severe muscle and joint pain3. swollen muscles and joints4. mechanics hands (rough thick skin on knuckles and palms) elbows,knees and feet.5. muscle weakness6. shortness of breathe and cough7. eyes get extremely red and almost like a blister over my eyes off and on, when eyes flare very painful and sore and dry.8 GERG9. IBS10. High protein in urine11. photosensitive. when in sun or heat develop red, raised blotches that burn and itch. The meds I am taking started out working on some of the symptoms, but now seems to be wearing off injection only seems to work for 2 days now and not as well with the swelling and pain. Doctor wants to do a EMG on Monday morning and possibly switch me to cytoxan or IVIG treatment. Its very frustrating getting all the tests done with nothing coming back positive other then severely bad PFT (pulmonary function test) and being put on all this toxic medicine without a conclusive diagnosis. Several items come to my attention and I will try to address as many as possible. Tese will be fairly generic but may assist you. Symptom: 9. IBS - This indicates that two concerns. The first is that you most likely do not have the proper good bacteria in your intestinal tract which will prevent you from absorbing nutrition properly. You should start a good probiotic that consists of at least 2 of the 3 forms of good bacteria your digestive system normally has. Second is that you may not be getting enough fiber in your diet. This will help to continue the IBS symptoms 1-6. If you have IBS and lack of proper probiotics you will not absorb proper nutrition which will cause these symptoms as they are subclinical symptoms of mineral defieciency. I say sub clinical because you may actulally show within normal on blood tests but the level for you may be low. You need to beaware that the brand of vitamin that you are taking is less than 10% bioavailable. You will need to switch to a better brand to start to see improvement. With proper supplements you should see improvement within 2-3 weeks with the light at the end of the tunnel of 2-3 months. I know this is very general but the best I can do here. If you would like a more detailed recommendation I can e mail it to you if you would like. Get well. Your daughters need you to. :)
    Nutritionist7 16 Replies
    • October 17, 2008
    • 00:55 AM
    • 0
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  • Hi SL I drink on average 4 to 6 20oz bottles of water a day, 2 glasses of milk a day. I have no sugar cravings. I dont have chocolate cravings at all, infact I rarely eat chocolate. I use a small amount of sugar on morning cereal. As for lyme testing, I have had several commerical as well as non commerical tests done and has come back negative. Thank you for your replies. Terri Well, you are certainly not dehydrated! Well done, there. And you probably don't have systemic candida, or you would be craving lots of sugar. Have you been tested for hypochloridia? Only a naturopath does this test. I really feel for your frustration, and wish you the best of luck in finally discovering what is causing your terribly painful symptoms.:confused: SL
    mindandbody 3 Replies
    • October 17, 2008
    • 02:55 PM
    • 0
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