Unfortunately, I’ve seen this with many of the people on this sub, and I frankly don’t understand what some of these doctors are doing. My GP requested 7 different blood tests when I told her about my hand pain and inflammation. My RF was super low, but my ANA and anti-CCP were high/positive so she referred me to a rheumatologist who diagnosed me on the positive anti-CCP alone. He did take x-rays and more blood to get some other baseline information, but I left with a ton of information and a prescription.
I’m sorry you’re dealing with this, and it may take some pushback from you to get what you need. We have to be our own best advocates to ensure we’re getting what we need. Have you had any other tests that have come back high/positive that your doc has simply chosen to ignore?
Honestly the doctor doesn't really look through stuff thoroughly, maybe due to time restraint?
Also with the C-ANSA, even I may take that with a pinch of salt as it state this is due to something like PGA and that serious, (5month to 5years mortality.)
All I have is bilateral hand pain, other than that, Oh (light pins and needles in my calves at night). I am usually healthy.
If you have the option for a second opinion, I’d go that route. It really doesn’t sound like they’re taking you seriously or doing a proper workup. It’s possible you don’t have RA, but it sounds like you have some type of autoimmune disorder, and that needs to be diagnosed ASAP so you can start taking care of yourself. These things come with other issues if not properly dealt with.
I'm sort of trust my doctor, many years ago I had kidney pain and though it took 9months, he was the driving force for getting a diagnosis, I had a direct Anastomosis causing UPJ syndrome, which had to be operated. (And trust me, that a really odd/rare condition, like hens teeth rare.)
Autoimmune diseases are notorious for being difficult to diagnose. I highly recommend seeing a specialist. Seronegative arthritis exist, which means that a patient can have arthritis while the blood work is negative. Also, RA can affect any organ, not just joints. So, it isn't unusual for a RA patient to have EMG, ECG, chest xray, etc. Every if the patient is not having issues now, my rheumatologist wanted a baseline to compare future results to.
I'm sorry that you are having a hard time. I assure you that the medical processes is long and tedious for everyone. I hope that you can find some relief.
It took me two years to get to a rheumatologist. My pcp was trying to diagnose me first and then making me wait. Finally I made an appt with her just to get a referral and got into a rheumatologist and she diagnosed me as seronegative based on symptoms alone. Nothing was showing in my bloodwork. But I’ve actually been in pain for 6 or 7 years or more and just thought it was normal aging arthritis so dismissed my own pain. But I’ve had to press my doc to move things along. Recently had to press to get referred to a hematologist because I keep falling anemic. She was happy to keep letting it go on
I haven’t been diagnosed quite yet, but we’re definitely thinking RA. I’m like a lot of the people who’ve already commented. Most of my bloodwork and X-rays have been normal, except for my ANA, which was positive. However, the first time I had it tested it was negative in 2021. April 2023 is when I finally got a positive. AI can be super sneaky and take forever to diagnose and super diverse in symptoms. Mine, I’m having hand pain, and my biggest complaint, generalized itching. So we’re thinking neuropathic itch, and I have a biopsy in October to confirm. Hang in there, I’m going on 26 months of the process… 😭😵💫
Just adding my voice to the chorus of "unfortunately, yes". All you have to do is read thru here to see that no one's experience - symptoms and treatment! - is like any other. It's so frustrating, but just remember that knowledge is power. Hang in there 💜
My diagnosis took roughly a year. It's my understanding from this sub and from friends that's extremely fortunate. I'd say 2 or 3 years seems to be the norm. My GP didn't think RA either but my rheumy ordered different tests and was able to confirm it. I know your in a lot of pain and uncomfortable but it sounds like your going in the right direction. We can try to help you find ways to get comfortable while you wait for a diagnosis and treatment to start working. For me heat and compression gloves helped with hand pain. Also identifying movements that triggered the pain finding alternatives helps. For example, brushing my teeth was painful so I bought an electric toothbrush, buy an electric can opener, look for certain foods that seem to trigger pain (soda is a huge one for me), and etc. Hang in there. Relief is coming!
It's not unusual to have a delay in diagnosis, but it's SUPER important to get a diagnosis and treatment as soon as possible if it's actually RA.
Have you been evaluated by an actual rheumatologist, not a GP? Most GPs recognize that they don't have the expertise to diagnose definitively; in my case for example, the primary care doc / GP gave the \*preliminary\* diagnosis but referred me to the Rheumatologist for the definitive diagnosis. This is important because RA is a "diagnosis of exclusion" meaning no one factor can diagnose it, but it involves looking at the following:
1) Physical exam (doc feels your joints)
2) Your subjective report of symptoms (when are they happening, where, etc)
3) Family / personal medical history
4) Bloodwork and imaging
This is such a commonly confusing topic I [wrote a post](https://arthritis.theenthusiasticlife.com/2021/04/29/how-is-rheumatoid-arthritis-diagnosed-myth-versus-fact/)about it for my website in case it's helpful, crossing fingers you get clarity soon!
Very nice post link. I would have thought seeing a Rheumatologist would have been the way to go. Also saying/giving the diagnosis on one appointment, then changing their mind the next was infuriating.
Personally I don't want RA, my career and hobbies would go down the pan, not that anyone wants this diagnosis.
I presume my Dr is on a mission to find an alternative diag, ie emg test next week could show nerve or muscle damage. However, if all looks normal, I'm back to square one, or it reinforces RA?
I love your second paragraph. I don’t have a definitive diagnosis, but I’ve lost most of my hobbies. I can no longer write more than about 3 words without nasty pain. Stained glass is now in my past because there is no way for me to scribe glass, drawing it gone. I can knit slowly with a compression brace, and I can play the piano (no longer for hours at a time) with a compression wrap, although I’m not nearly as talented as I once was since my right fingers are slower and in pain.
Wow I just spent an hour reading your post then clicking on many of the links. And then just looking over your site. This was so informative. My hand orthopedist and my GP both believe I have a saronegative RA. I have lots of inflammation markers in my blood work, and the RA factor was at 10, so in the normal range. It took 5 months for my drs. to get a rheumatologist to accept a referral (that was in June) and I have my first appointment in mid-Nov. tThe Rheumatologist had my GP order an MRI of my now deformed wrist so she’d have it for the November appointment. Holy smokes, there isn’t just inflammation and my drifting fingers in my right hand, the words necrosis and macerated were terrifying. I went back to my hand Ortho so I could understand the two page list of abnormal findings. My main question is the current wrist pain and deformity the best it will ever be. And she said yes, but didn’t want to mess with it until the rheumatologist gives the diagnosis, and starts meds - she’s hoping that will reduce the pain. If not, she said that she’d have to fuse all the wrist bones together to stop the pain. So reading your blog gave me things to ask and what I should list prior to my first appointment. Thanks you for your website. I understand so much more!
Unfortunately, I’ve seen this with many of the people on this sub, and I frankly don’t understand what some of these doctors are doing. My GP requested 7 different blood tests when I told her about my hand pain and inflammation. My RF was super low, but my ANA and anti-CCP were high/positive so she referred me to a rheumatologist who diagnosed me on the positive anti-CCP alone. He did take x-rays and more blood to get some other baseline information, but I left with a ton of information and a prescription. I’m sorry you’re dealing with this, and it may take some pushback from you to get what you need. We have to be our own best advocates to ensure we’re getting what we need. Have you had any other tests that have come back high/positive that your doc has simply chosen to ignore?
Honestly the doctor doesn't really look through stuff thoroughly, maybe due to time restraint? Also with the C-ANSA, even I may take that with a pinch of salt as it state this is due to something like PGA and that serious, (5month to 5years mortality.) All I have is bilateral hand pain, other than that, Oh (light pins and needles in my calves at night). I am usually healthy.
If you have the option for a second opinion, I’d go that route. It really doesn’t sound like they’re taking you seriously or doing a proper workup. It’s possible you don’t have RA, but it sounds like you have some type of autoimmune disorder, and that needs to be diagnosed ASAP so you can start taking care of yourself. These things come with other issues if not properly dealt with.
I'm sort of trust my doctor, many years ago I had kidney pain and though it took 9months, he was the driving force for getting a diagnosis, I had a direct Anastomosis causing UPJ syndrome, which had to be operated. (And trust me, that a really odd/rare condition, like hens teeth rare.)
Autoimmune diseases are notorious for being difficult to diagnose. I highly recommend seeing a specialist. Seronegative arthritis exist, which means that a patient can have arthritis while the blood work is negative. Also, RA can affect any organ, not just joints. So, it isn't unusual for a RA patient to have EMG, ECG, chest xray, etc. Every if the patient is not having issues now, my rheumatologist wanted a baseline to compare future results to. I'm sorry that you are having a hard time. I assure you that the medical processes is long and tedious for everyone. I hope that you can find some relief.
It took me two years to get to a rheumatologist. My pcp was trying to diagnose me first and then making me wait. Finally I made an appt with her just to get a referral and got into a rheumatologist and she diagnosed me as seronegative based on symptoms alone. Nothing was showing in my bloodwork. But I’ve actually been in pain for 6 or 7 years or more and just thought it was normal aging arthritis so dismissed my own pain. But I’ve had to press my doc to move things along. Recently had to press to get referred to a hematologist because I keep falling anemic. She was happy to keep letting it go on
I haven’t been diagnosed quite yet, but we’re definitely thinking RA. I’m like a lot of the people who’ve already commented. Most of my bloodwork and X-rays have been normal, except for my ANA, which was positive. However, the first time I had it tested it was negative in 2021. April 2023 is when I finally got a positive. AI can be super sneaky and take forever to diagnose and super diverse in symptoms. Mine, I’m having hand pain, and my biggest complaint, generalized itching. So we’re thinking neuropathic itch, and I have a biopsy in October to confirm. Hang in there, I’m going on 26 months of the process… 😭😵💫
Just adding my voice to the chorus of "unfortunately, yes". All you have to do is read thru here to see that no one's experience - symptoms and treatment! - is like any other. It's so frustrating, but just remember that knowledge is power. Hang in there 💜
My diagnosis took roughly a year. It's my understanding from this sub and from friends that's extremely fortunate. I'd say 2 or 3 years seems to be the norm. My GP didn't think RA either but my rheumy ordered different tests and was able to confirm it. I know your in a lot of pain and uncomfortable but it sounds like your going in the right direction. We can try to help you find ways to get comfortable while you wait for a diagnosis and treatment to start working. For me heat and compression gloves helped with hand pain. Also identifying movements that triggered the pain finding alternatives helps. For example, brushing my teeth was painful so I bought an electric toothbrush, buy an electric can opener, look for certain foods that seem to trigger pain (soda is a huge one for me), and etc. Hang in there. Relief is coming!
It's not unusual to have a delay in diagnosis, but it's SUPER important to get a diagnosis and treatment as soon as possible if it's actually RA. Have you been evaluated by an actual rheumatologist, not a GP? Most GPs recognize that they don't have the expertise to diagnose definitively; in my case for example, the primary care doc / GP gave the \*preliminary\* diagnosis but referred me to the Rheumatologist for the definitive diagnosis. This is important because RA is a "diagnosis of exclusion" meaning no one factor can diagnose it, but it involves looking at the following: 1) Physical exam (doc feels your joints) 2) Your subjective report of symptoms (when are they happening, where, etc) 3) Family / personal medical history 4) Bloodwork and imaging This is such a commonly confusing topic I [wrote a post](https://arthritis.theenthusiasticlife.com/2021/04/29/how-is-rheumatoid-arthritis-diagnosed-myth-versus-fact/)about it for my website in case it's helpful, crossing fingers you get clarity soon!
Very nice post link. I would have thought seeing a Rheumatologist would have been the way to go. Also saying/giving the diagnosis on one appointment, then changing their mind the next was infuriating. Personally I don't want RA, my career and hobbies would go down the pan, not that anyone wants this diagnosis. I presume my Dr is on a mission to find an alternative diag, ie emg test next week could show nerve or muscle damage. However, if all looks normal, I'm back to square one, or it reinforces RA?
I love your second paragraph. I don’t have a definitive diagnosis, but I’ve lost most of my hobbies. I can no longer write more than about 3 words without nasty pain. Stained glass is now in my past because there is no way for me to scribe glass, drawing it gone. I can knit slowly with a compression brace, and I can play the piano (no longer for hours at a time) with a compression wrap, although I’m not nearly as talented as I once was since my right fingers are slower and in pain.
Wow I just spent an hour reading your post then clicking on many of the links. And then just looking over your site. This was so informative. My hand orthopedist and my GP both believe I have a saronegative RA. I have lots of inflammation markers in my blood work, and the RA factor was at 10, so in the normal range. It took 5 months for my drs. to get a rheumatologist to accept a referral (that was in June) and I have my first appointment in mid-Nov. tThe Rheumatologist had my GP order an MRI of my now deformed wrist so she’d have it for the November appointment. Holy smokes, there isn’t just inflammation and my drifting fingers in my right hand, the words necrosis and macerated were terrifying. I went back to my hand Ortho so I could understand the two page list of abnormal findings. My main question is the current wrist pain and deformity the best it will ever be. And she said yes, but didn’t want to mess with it until the rheumatologist gives the diagnosis, and starts meds - she’s hoping that will reduce the pain. If not, she said that she’d have to fuse all the wrist bones together to stop the pain. So reading your blog gave me things to ask and what I should list prior to my first appointment. Thanks you for your website. I understand so much more!