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Old 05-24-2007, 11:45 PM   #1
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Question The results of tests are all negative

I have a daughter who is 17years old. She was tested on polymyositis. But the results of all the tests which included electroneuromyography came out negative. Yet she still has symtoms like mustle pain & weakness, slight fever and general fatigue. Since the doctor could not give definite diagnosis which meant no treatment. He told us to just wait and see. We are not sure how long we will have to wait. We don't know if the condition gets better or worse over the period of time. I'd appreciate if anyone who had the same experience gives me suggestions what the best things to do while we are waiting.

 
Old 05-27-2007, 10:22 PM   #2
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Re: The results of tests are all negative

I had the same problem and although my CK was elevated for over a year and I had the muscle weakness etc they kept telling me it was a virus. Eventually after a year they did further tests which included a test for Jo-1 antibodies (these strongly indicate PM) and they found I have them. Ask your Dr if he has tested for these for your daughter.

My Dr says I have PM but it is so mild that it doesn't show up on the tests however he is only 70 to 80 percent sure I have PM so at the moment I am not taking any meds for it. I have however gone to a naturopath and have altered my diet and I am taking supplements and vitamins. I can tell you that my CK although not normal has gone down and I am generally feeling quite a bit better. You might want to try this too.

Good luck.
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Old 05-28-2007, 06:29 AM   #3
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Re: The results of tests are all negative

Thank you for sharing information. Our doctor eliminated the possbility of virus as soon as the results from her blood test came out.This resutls also included Jo-1 antibodies which turned out to be negative.

I appreciate your taking naturopath and it is working for you. We don't have naturopath in my country. What my daughter is trying out is active hydrogen water and supplement called Mannatech. I am hoping this will ease her condition or somehow the symtoms will disappear along the way.

Please take care.

 
Old 07-16-2007, 07:16 PM   #4
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Re: The results of tests are all negative

I had the same exact problem a little over a year ago. I was 17 and experiencing the same problems and none of the tests came back for anything. The only ting that was obvious was that my CK was elevated. My best advice is to stand by your daughter. I had a hard time because everyone thought i was crazy and that only made it worse. Also, i wouldnt let them put her on any corticosteroids unless they know for sure because they just treated mye with prednisone and it only made it ten times worse and on top of that the drug has some horrible side effects that can affect your self esteem, especially considering that shes only 17 as i was. Eventually it went into remission and im hoping that it doesnt return. Just wait it out. Hope i helped

 
Old 07-17-2007, 05:22 AM   #5
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Re: The results of tests are all negative

I am sorry to hear that your doctor put you on the drug. Yes prednison gives you side effects.The doctor examined my daughter again but the doctor could not find anything wrong. He said it is very unlikely that your daughter has polymyositis. Because of changes taking place inside body of teenage girls often they experience disease like condition without any apparent cause.
However your case was different since CPK was elevated whereas my daughter's CPK remained normal. I did not understand your doctor was not careful enough to prescribe prednison knowing the fact that it has strong side effects. But I am glad your are now off the drug and hopefully it will never return.

 
Old 07-25-2007, 07:48 PM   #6
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Re: The results of tests are all negative

Thank u. I also hope everything goes well and your daughter gets better

 
Old 08-16-2007, 07:14 AM   #7
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Re: The results of tests are all negative

I happen to live in Tokyo, Japan myself and came down with mysterious illness around June 16...

It lasted for 8 weeks; I had extreme muscle weakness, joint swelling in the knee, fatigue, fever which would come and go, dizziness, my neck was stiff...


I was having vision and speech issues as well... I could barely get out of bed, I though I had Lupus or some severe condition...

Then exactly at 56 days, I felt fine, as if nothing happened, except I continue to have the dizziness....

I called the Infectious Instute in Tokyo, and they said my condition sounds like cat scratch disease, yet most of the symptoms are very much like Lyme disease...

What other conditions did your daughter exhibit???

Are you seeing a Japanese doctor/ Hospital or a Foreign/ International Clinic???




I have seen 4 Japanese doctors.... 3 said nothing is wrong and attribute to stress, and one of them wished to refer me to a psych ward because he said my condition is psychological....

I know many people are initially misdiagnosed with Japanese doctors, so I am very wary where to go from here....

THEN the 4th doctor found something; he said my Complementary "C4" was low, which means there is a autoimmune inflammation in my body, yet because all the other tests are normal he couldn't give me a diagnosis for now...

He said I have symptoms of "vasculitis" "Kekansien"( Japanese)

Also I noticed Tokyo Women's Hospital near Shinjuku/Yotsuya has many Rhematchi doctors... I plan to go there sometime soon...

I hope your daughter feels well soon...

Last edited by Nexis; 08-16-2007 at 07:28 AM.

 
Old 08-20-2007, 10:17 PM   #8
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Re: The results of tests are all negative

It must be worrying to have an unknown disease in a foreign country. It seems to me the condition you have described comes under broad category of collagen diseases except vision and speech problems. I don't know which hospital you went and what took place between you and the doctor.However it is good idea to go to the large University Hospital to have thorough check first. In Tokyo, at Ochanomizu area there are Juntendo University Hospital and Tokyo Medical and Dental University both have good collagen internal medcine department. I took my daughter to Juntendo University Hospital.
By the way I am not a foreigner. Is there any way if I can be any help to you please feel free to contact me.

 
Old 09-03-2007, 05:05 AM   #9
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Re: The results of tests are all negative

How is your daughter doing? Did she receive a diagnosis?

I don't look like a foreigner and can speak Japanese so its been easy to deal with telling the doctor my symptoms...

There too many people in Tokyo seeking medical help that I notice alot of doctors are not very serious as Western doctors in diagnosing conditions...

I went to the Tokyo's Womens Medical Hospital between Ichigaya and Shinjuku; the have a "Rhemachi" Center... I was quite impress with the doctor, and since this was my second opinion, I have no diagnosis except a possible "collagen" disease that my arise in the near future....

Since most of my symptoms are gone, except for fatigue and stiff fingers from time to time, I need to be tested every month or so and see if there are changes in my blood tests...



I have been to the Todai Hospital for other things yet the Tokyo's Womens Medical Hospitals Rhemachi Centers doctors are listed with the American Rhemachi Association and they do alot of research for "collagen" diseases more then Todai...

9 out of 10 autoimmune/collagen patients are women, from what my doctor, at Tokyo Women's Medical Hospital said...

 
Old 09-21-2007, 02:53 AM   #10
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Re: The results of tests are all negative

I am glad you went to Tokyo Women Medical hospital which is specially reputed for treating "Ryumachi". Now generally speaking Japanese doctors are cautious about giving diagnosis unless all the test results shown positive There seems to be quite a few who are in limbo because test results do not indicate clearly in positive yet experiencing collagen disease like symptoms. Now if your blood test indicates certain direction such as polymyositis then it would be best to visit University hospitals which I refered in previous message because they are specialized certain collagen disease such as myositis. Now I get all the information from Japanese web sites and a friend who also suffers from polymyositis. Also it is important that if you could have rapport with the doctor you see. If you cannot talk to the doctor all your concerns and worries it is better to find some other doctors. Meantime. please keep checking your blood test and if there are some positive indications then move further testing and see the results. Also if you don't feel well try out chinese medicine to just ease the condition. There is a lady doctor at chinese medicine department in Nihon Daigaku Itabashi hospital.

 
Old 10-18-2007, 09:04 PM   #11
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Re: The results of tests are all negative

In January, 2005, I contracted a near fatal infection and spent a week in the hospital on IV and oral antibiotica. I was so close to dead that after the infectious disease doctors told me what they thought I had, they sent in a minister who asked me if I wanted to be blessed. The infection started in my lower lip and within three days it engulfed my entire face and head. My lip was so swollen and infected that it hung down to my chin. My face was so swolen I was almost unrecognizable. I did not tell anyone that I was in the hospital because if I did not recover I did not want people to remember that hideous disfigured person.
I tell you all this, because it has taken almost three years for the dactors to diagnose the DM which was triggereed by the infection. My symptoms started with muscle and joint pain and have progressively increased. I now suffer from episodes where the pain is so severe that even pain medication doesn't help adn the fatigue is so extreme that I can barely get out of bed. Since my diagnosis 6 weeks ago, I have been treated with injections of chemo once a week, an oral immunosupressant and I still have not gotten any releaf. In another week they will try another immunosupressant. I was lucky that my doctors did not bail on me when all the tests were coming back negative. But I also took an active role in finding out what was wrong with me. I knew I was sick, and I was determined to find out what I had and to prove I was not crazy. I researched my symptoms and went to numerous doctors until I found one that had a backgroung in myositit. Unfortunately it took so long to be diagnosed and start treatment that the condition has started attacking my lungs and heart.
I hope you and your daughter don't take a passive role in her diagnosis and treatment. Doctors don't know everything and they should not dismiss your input into your daughters health. If they do, find another dactor. My doctors all worked together with me to diagnose my condition. I don't think I would have been diagnosed yet if I did not do some legwork myself. The myositis has also affected my brain function, so if there are misspelled words or poor grammer I apologise.
I hope everything works out for your daughter. Hopefully she will be diagnosed soon, and with any luck it won't be myositis.

Last edited by sidney123; 10-18-2007 at 09:06 PM.

 
Old 10-19-2007, 01:06 PM   #12
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Re: The results of tests are all negative

I am in the early stages of the muscle part of DM - Although my doctor has been very good with dealing with the skin problems I feel that I am not believed because the muscle enzime tests keep coming back negative. I KNOW that I am in pain but it can be so hard to convince someone else that you are suffering when the tests say otherwise.

 
Old 10-20-2007, 09:35 AM   #13
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Re: The results of tests are all negative

My CK levels have always been normal, as was my first two EMG's. If it wasn't for the one doc who believed me and went the extra step to do a muscle biopsy I never would have been diagnosed with polymyositis. Thank God for Dr. Stanton. Now I know that my first EMG was negative because it was the first week of symptoms, the second was negative because I had a resident who only did 2 needle sticks and myopathy can be scattered and the third EMG was positive because they were looking for it and did it right. EMG's are only as good as the one performing it. Now, after I was treated like I was a mental case, the docs say there are atypical patient's. Too bad they didn't think about that for the year I was suffering and really, really afraid of death being around the corner for me. Unfortunately, the prednisone is cutting it and I have bad muscle twitching which is not typical for this disease. I am trying to get in the Johns Hopkins Myositis Clinic in Baltimore. Anyway, don't give up. Push for a diagnosis, whatever it is.

 
Old 10-23-2007, 04:53 AM   #14
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Re: The results of tests are all negative

thanks for your reply - being in the UK I guess the tests and treatments vary. I am currently on no medication at all .I am waiting to see a neurologist again. I see my dermatologist every 6 weeks but I feel like giving up because I don't see anything happening, in fact I feel a lot worse than I did at the start . I'm constantly tired and to be honest I haven't got the energy to fight for tests. I have never had a muscle biopsy , my doctor seems to rely on the blood tests.

 
Old 10-24-2007, 09:28 PM   #15
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Re: The results of tests are all negative

you might want to see a rheumatologist, preferably one who has a background in myositis. musacle biopsies don't always show myositis, mine came back negative. most of my tests came back negative, but my crp is very high. has anybody explored fibromyalgia? it also causes similar simptoms as myositis. that was the initial diagnosis. my diagnosis came after an ear, nose &throat doctor tested me for an autoimmune disease. after that test came back positive, i was sent to a rheumatologist who had done research in myositis. he reviewed my medical records for three days before i saw him and as soon as as he noticed the rash on my chest he was sure i had myositis. it took almost three years of doctors, tests and alot of research on my part before i was diagnosed. i also had a spinal tap to rule out MS. i went to many specialists, but we all worked together and now i have stared treatment. they started me on methotrexate and when that did not work i started taking arura. that hasn't worked either so now they are talking about iv infusions. i'm not sure about this treatment, i need to do some research.

 
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