False negative RA

[loneil]

I had been tired and in pain for a long time. Every time I went to the Dr. I would get a B12 shot and some pain meds and told to try to cut down my stress level and get more rest. He ran the RA factor test and it showed negative but I continued to hurt and run a low grade temp. and then started swelling in joints and had sore spots all over. He sent me to a specialist in RA and sure enough I had it plus OA and an added bonus of fibromyalgia. I have been going to him for about 5 years and have gone through various sorts of meds to try to help but I really can't say that I am much better. This is just to let you know that if you have these sorts of symptoms and the standard test comes back negative you still could have RA. My medical doctor is a really good doctor and did everything he could to help but knew something was wrong.

[MNmom]

I am in the same situation! My problems started almost a year ago now and my RF test was negative so they assumed I didn't have it. THe rheumatoglist did a bone scan which confirmed everything in the joints in my hdans, feet and knees but still refused to officiall call it RA. I don't love this Dr but there aren't too many choices in my area. I was started on Plaquenil and Prednisone and the prednisone worked wonders but is not working anymore and the Plaquenil I dont believe has ever worked. I now run a low grade fever constantly (for the the past 3 months now) and have a very low Vitamin D level. She still refuses to call it RA but I know it is. She doesn't call it anything - why refuse to "diagnose it"?

[loneil]

I was really fortunate in that my family doctor knew of a really good RA guy. His bed side manner is really bad too, but the first visit I spent about 2 hours of him pounding on me and twisting me and x-raying me I thought I would die. If she didn't think you had RA why put you on plaquenil and prednisone? That is the first thing they usually do. Exactly what mine did. I didn't want the prednisone because of the side effects it can cause later on. I am now on plaquenil 400 mg a day with folic acid, methetrexate 8, 2.5mg every Tuesday, high doses of Vitamin D and A, ultram for pain as needed and a host of other things for acid reflux caused by the other meds I am taking. I think I would really try to find another RA person. We live in a very small town and I drive 2 hours every 3 months to see this guy. The fever by the way will continue as long as you have flare-ups or inflamation. Diet will help. There are foods that cause inflamation such a white potatoes. I love them but they are a no-no for me. I eat sweet potatoes. I can tell now by experiment what does and doesn't help. I really feel for you because I spent years thinking I was really almost crazy and just getting worse. It helps to know you have something so good luck in your search for a good doctor.

[MNmom]

She wasn't ready classify it as RA - she classifies it as something else but I don't remember what - I know its RA and so does my primary care. She just lowered my Plaquenil dose and added Methotrexate like you are on. I am very nervous about it but am starting it tomorrow! So now I am on

Plaquenil 400mg
Methotrexate (dont know the dose)
Prednisone 5mg
Vitamin D 100,000mg/week
Folic Acid (1 gram/day??)
Multi-vitamin
Cymbalta (depression - go figure! LOL)
Minocycline

is that a lot or what??????????

[loneil]

I figured they would be putting you on methetrexate next. That is the usual procedure. Your pills are probably 2.5 mg each so thats about 10mg of methetrexate. I started with four and now am at 8. I didn't get sick until I started taking about 6 and it only took me a few hours after I took them for them to make me sick in my head and stomach. Some people never even get sick so maybe you will be one of them. I hope so. I still take alot more medicine than you are taking. I stopped taking any antidrepressant because the side effects on me are worse than the depression!!! I do take xanax for anxiety attacks. My RA wanted me to take Lyrica for my fibromyalgia but it made my right side of my face numb so I stopped taking it.

[Pam]

I am new to this forum. I too have had a false negative. This is nuts, because my hands are hot, swollen and painful. I often have to hold ice cubes in my hands to cool them off. They have been this way for about 6 years. I take nothing. I'm afraid of all the nasty side effects. I haven't seen a RA doc, yet.
I see all the meds people are taking but it seems to be a general concenses, that nothing helps. Something in our body has broken down. I want to cure it through natural healthy methods. God help me, because so far, this quest for health has not helped.
Is it diet? Is it my disposistion? Anxiety? Anger? Something has caused trauma to our systems I believe, that has made it break down.
I feel so lost. I wish I could find something that works!
By the way, I also have meneieres disiese, another auto immune disorder.
Thanks for listening.
Pam

[loneil]

Hello Pam,
The only reason I went to the RA doctor was to see if he could help. It has been 5 years and nothing has really changed. I have been refusing all the meds he wants to try on me and I think he is starting to get upset. I went to a Homeopathic doctor about 8 months ago on the advise of some friends. When she saw me she said, "I am your last hope aren't I?". I started to cry. I told her I felt so bad and wanted to get well so bad that I would do anything. We talked for 1 hour. She told me exactly what she would do to help me and promised me, yes promised me if she could not help me in 1 year that she couldn't help at all. But she also made me promise to do everything she asked. I have been on the diet, exercise, and vitamin and mineral supplements plus she has started an IV push and I detox and use a rife machine. I can tell you that my energy levels have increased. I wasn't even able to get out of bed sometimes and had to take naps 2 or 3 times a day. Now I don't. I feel like I have improved alot. More importantly I have HOPE! My husband sort of mocks the idea but I tell him even if it is in my head I am getting better what difference does it make as long as I am well....
You are right.. there has been trauma to our systems and like you I was sick for 10 or 12 years before I knew what was wrong. I feel like I am on the road to a better life. I do have set backs but I bounce back faster than I use to.
I know how you feel and my heart goes out to you. You really should see an RA doctor just to confirm the problem.... there are other things that seem like RA that aren't too....
Good luck to you.

[Pam]

Hi Loneil,
I am so skeptical when it comes to people taking our money. I honestly hope this Homeopathic doctor helps you. But the fact that she is giving it a year, taking your money, and really promising nothing, bothers me. Okay, enough said.

I think we are all predisposed to certain diseases, and if we set up the correct "climate" within our bodies, then disease breaks lose.
I try to think of what I have done in my 53 years that could lend itself to disease.
Weight has always been an issue. Up and down the scale. Did this tip me over the edge?
I worry alot and anxiety and stress have also been a constant companion,..... maybe this tipped me over the edge?? I constantly work on these issues. I think the "cause" may be different for everyone. So, what do I do? I'm eating very healthy, number one. I just read a book titled, "Skinny Bitch." Don't let the title fool you! It's full of info! Some I knew, some I didn't. Yes, the language gets a bit fowl at times, but if you can get through that, it's a book worth reading. In simple terms, it talks about how food can make you sick. It makes so much sense! Think about animals, pets or in the wild. If they are sick, proper nutrition usually brings them back to health. Why would it be different for humans? So, I'm eating right, (the skinny bitch way) doing Yoga to sooth my mind AND body, a thinking as positive as possible! This includes seeing myself healthy again.
Again, didn't think I had this much to say. But it's pouring out of me.
Thank you for writing me Loneil, it means alot.
Pam

[loneil]

Believe me, I didn't pay a penny out until I saw what she had in mind and like you it mostly has to do with diet. I am on a diet that is 80% fruits and veggies and 20% turkey,fish, and chicken. No red meat, no dairy products except yogurt and cottage cheese. I do excercise daily and I also try to stay positive. I have found out alot about diet and how some foods do cause inflammation so I stay away from them. My weight has never been a problem. I have had problems with my thyroid since I was very young and had to have my right gland removed because of golf ball sized goiters. I started going down hill after that was done. I have made up my mind that I will get better one way or another! I also had a very demanding job with help coming and going. I worry alot too and stress is such a big factor. It really can be a big problem. Anyway, thanks and take care. Linda

[krishna]

Any recommendations on your homeopathy doctor? I live near NY city

[Mockingbird]

I have had similar experiences, one day they say it is RA, then they say it's my adrenals causing it, now it's an issue with my thyroid, kidneys and liver, I feel like everytime I go to the doctor it is something else. I have spent so much money and legit healthcare. Nothing seemed to help and I felt like I was passed from one doctor to another that would just read the reports and say yup! go see this guy instead.

Finally I had Reiki done, it as a gift and it worked despite my thought it was all sham. I had such severe pain in my back just getting up and putting on my shoes was a chore. At first the Reiki didn't help, in fact I felt sick then in about 48 hours something went crack crack in my spine an all the pain went. For the first time in 2 yrs I had normal feeling in my feet again. I went back and started herbals with a PH diet. Got a new GP that understood homeopathy and for once it seems like I am making progress. It wasn't all smooth sailing though, when nerves are compressed a long time from swelling and they start working you feel like your legs and feet are on fire. I know I will never get "cured" or feel like I used to. I just don't want to be in constant pain and have almost a normal life.

[savvyeyty]

I had been tired and in pain for a long time. Every time I went to the Dr. I would get a B12 shot and some pain meds and told to try to cut down my stress level and get more rest. He ran the RA factor test and it showed negative but I continued to hurt and run a low grade temp. and then started swelling in joints and had sore spots all over. He sent me to a specialist in RA and sure enough I had it plus OA and an added bonus of fibromyalgia. I have been going to him for about 5 years and have gone through various sorts of meds to try to help but I really can't say that I am much better. This is just to let you know that if you have these sorts of symptoms and the standard test comes back negative you still could have RA. My medical doctor is a really good doctor and did everything he could to help but knew something was wrong.

I see. Thank you for your advice. I guess it wouldn't really bother to get a second opinion. Hope you get better.

[mamabear]

I learned a lot from your posts here. It seems that vitamin D and proper diet helps to alleviate RA pains.

[malou]

I had been tired and in pain for a long time. Every time I went to the Dr. I would get a B12 shot and some pain meds and told to try to cut down my stress level and get more rest. He ran the RA factor test and it showed negative but I continued to hurt and run a low grade temp. and then started swelling in joints and had sore spots all over. He sent me to a specialist in RA and sure enough I had it plus OA and an added bonus of fibromyalgia. I have been going to him for about 5 years and have gone through various sorts of meds to try to help but I really can't say that I am much better. This is just to let you know that if you have these sorts of symptoms and the standard test comes back negative you still could have RA. My medical doctor is a really good doctor and did everything he could to help but knew something was wrong.

just curious on the term specialist on RA..what do you call them? is it orthopedic or internal med doctor or? so i guess we need a second opinion if the symptom still persists isn't it so?

[faith]

at least you know that you are positive with RA..but what takes you too long to get a second opinion?

[naturelover]

I really feel that RA is one of the most unkind and recurring painful ailment. My sister, who is having pain on her both shoulders and every often being referred to a doctor. The doctor is simply saying it is only a aged factor and nothing to worry. It happens so that after the temporary medication, she is getting relieved for few weeks.

[Terrie]

just curious on the term specialist on RA..what do you call them? is it orthopedic or internal med doctor or? so i guess we need a second opinion if the symptom still persists isn't it so?

Hello Malou:

The Specialist that you are looking for is Rheumatologist(Rheumy for short). If you don't get satisfaction from one Dr., then a second opinion is required.

My Rheumy had told me years ago that 20% of People with RA have a negative on the test unfortunately.

[kageyd]

It makes me very sad to see so many people on this forum blaming themselves for having contracted RA (was it stress, was it my diet....etc.) I firmly believe that everyone should experiment with their own methods for stress reduction, and for a diet and lifestyle that in general seems to help them. However, I am blessed to have many close friends who are medical physiologists, and from them I have learned just how complicated the human body is, and in many realms how little anyone really knows, including the most up to date physicians. In the case of RA, even young children are diagnosed with it and we certainly shouldn't think there is any personal blame on their part, that they did anything wrong. The immune system is incredibly complex, and people are learning more about it every day, with a very long, long way yet to go. Things just plain go wrong with it, for reasons that are most often unknown. Things like stress and diet MAY play a role, but if so that role is not known, and is probably minor for most people. We just have to accept that something has gone wrong and we probably never will know why - but we continually experiment on ourselves with every possible tool to fight - including meds, including what seems to work in diet, including appropriate exercise, including whatever we find is good for us in stress reduction. But the fact that something went haywire in the first place is NOT our fault; it's no one's fault. It just happened, and the only way to keep ourselves sane is by fighting it with all the tools available to us and not blaming ourselves for it.

Anyway, that's the philosophy that's carried me for 69 years of a great family and a lot of professional accomplishment through more complex illnesses than you want to year about - NONE of them "my fault." I'm a fighter, I do not give up, and I long, long ago stopped blaming myself. Try it.... Maybe this will be of value to someone.

Kageyd

[crimson]

I guess if you feel that you are not feeling well with the doctor that you have, you need to have a second opinion.

[kageyd]

Seek out recommendations for a good, recommended, rheumatologist, or two. Do not trust a general practitioner to be totally up to date on RA; the GP may be very good, but too many of them are afraid to say, "I don't know, you have to see a specialist."

[naturelover]

kageyd wrote:

Seek out recommendations for a good, recommended, rheumatologist, or two. Do not trust a general practitioner to be totally up to date on RA; the GP may be very good, but too many of them are afraid to say, "I don't know, you have to see a specialist."

i am taking my wife to a GP only, who is treating my sister (who is also having RA) too for the past four years. They were indeed referred to RA by our GP, with whom we have a long relationship for many years. Till date, so far so good.

[Carol]

Not all negitive RA tests are false. There is a form of RA called Sero Negitive. Simply the RA factors do not show up in your blood tests. The only way to have this RA diagnosised is to see a specialist who will take x-rays and other tests. There are other auto immune diseases treated by a Rheumatologist that mimic RA.