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relapsing polychondritis do you still think this could be ...

Sent to Health Experts May 20 01:26 AM

relapsing polychondritis do you still think this could be what I have. Blood test smooth muscle autoimmune positive

 

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Female, United Kingdom

Customer (name blocked for privacy)
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May 20 1:33 AM (6 minutes and 8 seconds later)
         
REPLIEDCheck Mark
Anti-smooth muscle antibody, when positive, usually indicates any one of the following conditions:
  1. Chronic active hepatitis
  2. Cirrhosis
  3. Infectious mononucleosis (recent or past infections)
This test is usually done for the diagnosis of the first mentioned condition i.e. chronic active hepatitis. Your diagnosis of relapsing polychondritis is most likely a separate diagnosis and has nothing to do with this test result.

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May 20 3:19 AM (1 hour and 46 minutes and 47 seconds later)
         
Reply to Physician's Post: I WANTED MY QUESTION TO BE ANSWERED BY DANIEL NELSON. I CANNOT ACCEPT AND PAY UNLESS I SPEAK WITH DANIEL NELSON.

I WAS TOLD IF I PUT THROUGH MY REQUEST TO BE ANSWERED BY DANIEL THAT THERE WOULD BE NO PROBLEM AND YOU WOULD CONTACT HIM FOR ME LIKE YOU DID LAST TIME. YOU SENT HIM THROUGH A NOTE ASKING HIM TO CONTACT ME.
i AM SORRY BUT I CANNOT PAY FOR THIS REPLY AS I DONT FEEL I HAVE AN ANSWER UNTIL I SPEAK TO DANIEL NELSON.
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May 20 6:45 AM (3 hours and 25 minutes and 55 seconds later)
         
I cannot accept your replies because I dont consider they have answered my question. I cannot pay until I have talked to Daniel.
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June 12 6:11 AM (22 days and 23 hours later)
         
Relist: I still need help.
Its been confirmed by Doctors over here this is what I have. I am waiting for Rheumatologist appointment, Mr. Paul Creamer at Southmead Hospital, Bristol. On blood tests I have had recently my Rheumatoid Factor was 1:640 the normal rate should be 1:40, can you elaborate.
Also I keep getting fluid in my legs, this is about the 5th or 6th time within the last couple of months, can you tell me if this relates to my liver not working properly, I had a blood test for liver about three months ago which was normal. I am going into hospital on the 23 June for a double prolapse op, so will be out of contact for about three weeks
Answer
June 12 1:31 PM (7 hours and 20 minutes and 28 seconds later)
         
ACCEPTEDCheck Mark

Dear Mary,

My apologies. I have not been notified of your questions above and just happened to stumble upon it today by accident. I am glad to hear from you.

You mentioned that you showed autoimmunity to smooth muscle, known as anti-smooth muscle antibody, or ASMA for brevity. This antibody is seen in autoimmune liver conditions, but is also seen in overlap in and with other autoimmune conditions, so in my opinion the relapsing polychondritis is not ruled out, since it overlaps with many autoimmune conditions. This, along with you elevated Rheumatoid Factor (a rather non-specific marker of autoimmunity) both make me clearly concerned that you have an underlying autoimmune disorder, and I still wish for you to have a thorough Rheumatologist evaluation.

The RF of 1:640 means that your blood needs to be diluted 640 times in order to have the Rheumatoid Factor autoantibody become undetectable. The fluid in your legs could be from many different conditions, but with normal liver function studies, liver failure is not likely. You may have some problems with the valves in the deep veins of the legs, called venous insufficiency. I would also wish to make sure your heart is pumping well and that the swelling is not due to congestive heart failure -- an echocardiogram should answer that question. We generally treat venous insufficiency with a diuretic ("water pill"), leg elevation while at rest above the level of the heart, and sometimes compression stockings to help provide support and prevent reaccumulation of the fluid/swelling.

I have another idea if you wish to try to contact me in the future, and that is you can go to my profile and specifically request me from there if you wish. I believe that will generate an email to me notifying me that you have a question. If I don't answer it in a fraction of an hour, it becomes available to other experts to answer, but you can always write "For Daniel Nelson, MD only:" or something similar. Remember, I do not get online too often so I may take a day or so to respond, but I will respond as soon as I can once notified.

I hope this helps, my dear. Keep me appraised of that Rheumatology appointment with Mr. Creamer at Southmead in Bristol. Cheers.




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September 5 8:10 PM (85 days and 6 hours later)
         
I saw the Rheumatologist yesterday and was very disappointed with his attitude and the remarks he made.He discounted the results of my Rheumatoid Factor and smooth muscle blood test he said they could be a false positives and I remarked I was concerned that my Rheumatoid Factor was so high and had risen dramatically since leaving Spain, he said it was because they probably use different calculations in Spain, I advised him the base was 1:40 over there the same as it is here, he didn't give me an answer.He had seen three patients with this disease in his career and said because of the difference in timing when I get the pain to theirs he was discounting the diagnosis of R.P. although he said I had several symptoms which would relate to this illness, but the only reason he was discounting the diagnosis was because of the frequency difference, ie. I get my pain and inflammation in my ear nearly every day, it can last for 2 hours or anything up to 12 hours, whereas his patients their inflammation came for a week at a time and then went away for several weeks or months, then came back for another week. He did not seem interested in anything I tried to say to him, he wanted to give me his views only and would interrupt if I tried to tell him anything. I tried to tell him about the constant itching I get all the time now he told me to see a Dermatologist. He did organise X Rays looking for Rheumatoid Arthritis and blood tests for this condition but is not testing me on anything else and if these do not show anything he does not want to see me again. I know there is no test for diagnosis of RP but he is not even pursuing it at all or anything else.
I will wait and see the results of the tests but I have not got any confidence in him at all. Do you think it wise to get another opinion. I obviously, don't want this disease or the medication that goes with it, but am afraid he may be dismissing it out of hand without investigating it and if it did in the future prove to be RP it could be very detrimental medically.What are your thoughts Daniel
Best wishesMary

Edited by Customer (name blocked for privacy) on September 9 2008 at 12:46 AM
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September 9 1:16 AM (3 days and 5 hours later)
         

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I saw the Rheumatologist yesterday and was very disappointed with his attitude and the remarks he made.He discounted the results of my Rheumatoid Factor and smooth muscle blood test he said they could be a false positives and I remarked I was concerned that my Rheumatoid Factor was so high and had risen dramatically since leaving Spain, he said it was because they probably use different calculations in Spain, I advised him the base was 1:40 over there the same as it is here, he didn't give me an answer.He had seen three patients with this disease in his career and said because of the difference in timing when I get the pain to theirs he was discounting the diagnosis of R.P. although he said I had several symptoms which would relate to this illness, but the only reason he was discounting the diagnosis was because of the frequency difference, ie. I get my pain and inflammation in my ear nearly every day, it can last for 2 hours or anything up to 12 hours, whereas his patients their inflammation came for a week at a time and then went away for several weeks or months, then came back for another week. He did not seem interested in anything I tried to say to him, he wanted to give me his views only and would interrupt if I tried to tell him anything. I tried to tell him about the constant itching I get all the time now he told me to see a Dermatologist. He did organise X Rays looking for Rheumatoid Arthritis and blood tests for this condition but is not testing me on anything else and if these do not show anything he does not want to see me again. I know there is no test for diagnosis of RP but he is not even pursuing it at all or anything else.
I will wait and see the results of the tests but I have not got any confidence in him at all. Do you think it wise to get another opinion. I obviously, don't want this disease or the medication that goes with it, but am afraid he may be dismissing it out of hand without investigating it and if it did in the future prove to be RP it could be very detrimental medically.What are your thoughts Daniel
Best wishesMary



Edited by Customer (name blocked for privacy) on September 9 2008 at 3:08 AM
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