Hey all. I'm new to the forum but I'll start by introducing myself. I am a 33 year old male who has been experiencing major joint pain in my fingers and wrists for the past 6 - 7 months. Along with joint pain I've been experiencing lack of grip strength, throbbing in my wrist and finger joints, sporadic numbness/tingling that comes and goes. Both hands and wrists started experiencing these symptoms at the same time. Combined with these symptoms I've also been suffering from fatigue and my immune system has been down. In the past 6 months I've had strep (3) times along with a cold that I can't seem to kick. Also, simple things such as lightly bumping my hands against an object can bring about severe pain that about brings me to my knees. I visited my GP to have him investigage into my symptoms. When making the appointment and at my visit I specifically asked him to look into arthritis as a cause. However, all he did was do a few hand position tests and orderd a EMG/NCV study. The EMG came out normal, however the NCV study came back with results indicating bi-lateral CTS. The neurologist that perfomed the tests stated to me and put in his report that while the results did show nerve damage in line with very "mild" CTS, that my pain and symptoms where "out of proportion" with my NCV test findings. The neurologist stated that he has seen a lot of cases similar to mine that were the early stages of RA. He then recommended that I be screened for RA as a possible contributing factor to my CTS disease and if it proved positive to treat the underlying cause to resolve or bring relief to my CTS. My GP made no mention of this recommendation to me and never looked into it any further. I wouldn't even know that the neurologist specifically recommended screening me for RA, had I not went and picked up a copy of the EMG/NCV report to take for a second oppinion. Five months have passed since my NCV study and being diagnosed with CTS. During this period I've quit doing everything possible that could be aggrivating or contributing to the condition other than work. Still my symptoms have not improved and my joint pain has gotten progressively worse. Some days the symptoms are better and seem to have gone away. Then other days I'm right back to square one. Does this sound like it could be RA? What tests can specifically be done to screen for RA? Due to this experience with our family GP combined with other bad experiences with him we've left his practice and got into another GP. I'm due to see her on December 20, 2006. I have an appointment with my chiropractor tomorrow so I may see if he can run tests and look into the possibility of RA, however since he's only a chiro I'm not sure that he can screen for this.
Any info would be greatly appreciated.
Ryan
hi ryan
I am a newbie on the board as well but I would keep on my Doc about the joint pain... I am discovering you really have to be a vocal pt or they just tell you crap like the rd are reviewing your case...?
but it could be RA if it is you have to be on your doc make him get you seen... I am finding out you have to be very persistant or they kinda say well we can see you in a month a month? a month can be a long timeeeeeeeee when your in pain they just do not seem to get it.
what a health system we have....
let's see how much medical research could have been done with the billions of dollars we are throwing away in Iraq each month
you have to persistant ryan...
I hope it's not RA because it is a monster but there are lots of good people on here.
Jeezuz some GPs really Pee me right off.
[QUOTE=Cheese] Jeezuz some GPs really Pee me right off.
Here is what I would do....demand that he refers you to a Rheumatologist for a 2nd opinion. IF you do have RA and he is not acting on it now then you stand at high risk to have major joint damage. I have met so many people who simply go on and on with an idiot GP taking pain relievers and never seeing a Rheumy.
This is YOUR life and YOUR body...take control now.
Dont allow GPs who have little to no training in this area control your moves. Your diagnosis sounds eerily similar to what I experienced at the start...fortunately my GP was smart enough to immediately send me to a Rheum...AND get Xrays of joints and blood tests done while I was waiting.
By the way....a blood test can show negative for RA...but you could still have the disease.
oh...a Chiro can actually do you MORE harm than good if your joints are inflamed with RA. I would not allow a manipulation of any part of my body before...and thankfully I didnt as it may have caused me more pain.
A Rheumatologist is the ONLY practitioner that can 100% tell you if you are active with RA or another form of Arthritis.
[/QUOTE]
Thanks for the reply! This isn't the first time our GP has done something entirely stupid to upset us. He has many patients leaving his practice. Unfortunately, I have already left and transfered my records to a new GP, with whome I am wating to get into for my first appointment. I go and see her on December 20, 2006, which totally sucks because it's (13) days away. My hope was not to get an adjustment from my chiro, but rather to have the chiro order blood work and maybe do a hand/wrist x-rays along with giving me a referral to a Rheumetologist for a second oppinion. Do you know if a Chiro can refer a patient to a Rheumetologist, as well as order blood work and such?
I'll admit I am mad at my old GP. I wouldn't even know that the Neuro recommended that I get tested for RA had I not went and picked up a copy of the test results to take to my chiro for a second oppinion. I could have been looking into this (5) months ago if I would have known.
We've had trouble with this GP ever since our "city owned" hospital bought over half of the doctors out by offering to pay their malpractice insurance if they only refer patients to doctors within their facility. You see, there are no Rheumetologists in our city. The closest one is 30 miles west. There are no RA physicians within their "network" facility so he didn't offer to look into it. We had the exact same issue when my daughter was diagnosed with Scoliosis and needed to see a pediatric ortho. Since there were none within their "network" they wouldn't refer us to anyone, we had to do it ourselves. It's BS!
You are right Ta2d that is BS! And I can totally see your point and how it happened.
I don't know if a chiro can do all that. I'd leave the xraying to the RD - they have certain positions they xray in. Why expose yourself to more xrays than you need to, right? Your going to get alot of xrays if you have RA.
Diagnosing RA can be difficult, you may have all the symptoms but nothing hard (ie: positive blood work, erosions on xrays, a large joint they can drain and find out whats in your joint fluid, etc). So then the diagnoses comes from your symptoms and your RD's experience. It may take quite a while to even get an exact diagnoses. There are so many diseases thay mimic each other and that's the RD's job, to figure out which one you have.
I know your wait is still 13 days away and I'm sure you are tired, frustrated and just want to know what's going on with your body. But, I think the best thing you can do for yourself is write down everything! When it started, the strep, what exact joints are bothering you, the fatigue, where you swell etc. The RD needs to know it all. Even mark on your body in pen the places where you have the pain. Also, ask you family if you have any blood relatives with auto-immune diseases like lupus, MS, Chrones, psoriais etc... Go into the appointment prepared because it will help them help you.
Until then my thoughts and prayers are with you and you have your new friends here to help you through!
Ryan welcome to the board. You will find a lot of support, caring, and knowledgable people here.
You have already gotten some great advice here. The wait does suck when you are in pain and I just want to let you know I am thinking about you and hope that you can get some pain relief when you see your new GP. Advocate for your health care. You deserve to find out what is going on and to have control over the pain.
Thanks for all of the responses! Well, at this point it's to late to get out of the chiro appointment without being charged. That being said, I could use a back adjustment anyway and I "may" mention that I'm going to be evaluated for RA. If the chiro wants to do hand x-rays I'll probably let him, as I'm already met my deductable and I'm covered 100%. I understand that the Rhumetoligst will probably order more. I'll keep everyone posted.[QUOTE=Trixie66]You are right Ta2d that is BS! And I can totally see your point and how it happened.
I don't know if a chiro can do all that. I'd leave the xraying to the RD - they have certain positions they xray in. Why expose yourself to more xrays than you need to, right? Your going to get alot of xrays if you have RA.
Diagnosing RA can be difficult, you may have all the symptoms but nothing hard (ie: positive blood work, erosions on xrays, a large joint they can drain and find out whats in your joint fluid, etc). So then the diagnoses comes from your symptoms and your RD's experience. It may take quite a while to even get an exact diagnoses. There are so many diseases thay mimic each other and that's the RD's job, to figure out which one you have.
I know your wait is still 13 days away and I'm sure you are tired, frustrated and just want to know what's going on with your body. But, I think the best thing you can do for yourself is write down everything! When it started, the strep, what exact joints are bothering you, the fatigue, where you swell etc. The RD needs to know it all. Even mark on your body in pen the places where you have the pain. Also, ask you family if you have any blood relatives with auto-immune diseases like lupus, MS, Chrones, psoriais etc... Go into the appointment prepared because it will help them help you.
Until then my thoughts and prayers are with you and you have your new friends here to help you through!
[/QUOTE]
My grandma on my mom's side sufers from Psoriasis and my grandma on my dad's side had arthritis (she's passed on), however I don't know what type of arthritis she had. I do know that her arthritis came on in her early 30's.
BTW, I forgot to ask those of you who have been diagnosed with RA. Does cold weather aggrivate the condition? The reason that I ask is that this winter, every time I get out in very cold weather my fingers wrists and ankles throb and ache especially bad after being out. This didn't happen to me before all of these symptoms started.
Welcome! I agree, see a rheumy! Your symptoms definitely sound like possible ra and need to be checked into further.
As far as the chiro, I've gone for years. Since my ra has gotten worse, I do find that my adjustments hurt a bit more and I am VERY sore that day and the next. To the point, actually, that I only go about every 6 weeks now instead of the every two weeks I was doing! I would mention the possible ra so he knows to be extra gentle and having them put a heat pack on afterwards will help as well!
Yes, cold weather and changes in the weather can affect RA. Humidity can also affect RA. My husband says I am better at predicting the weather than the pros lol.Ryan. Also, check with your insurance company to see if you even need a
referral to see a rheumy. My insurance company does not prevent me from
calling on a 2nd and 3rd opinion but they are all so different. About cold
weather, I live in Montana and my husband and I traveled to DC in late
October. It rained...like 6 inches during the week that we were there. It was
also very cold and windy. During that week, I was able to identify every joint
in my body that had arthritis. I could hardly move. When I arrived back in
Montana, it was 65 degrees and I was back to my mild pain level.
So, I found out that week that the cold, wet weather really makes me hurt.
The other thing I was going to mention is to get checked for Lymes disease.
It may be worth checking into.I was told that barometric pressure truly does affect some people with RA.
Personally, I used to notice flares generally occurred for me when summer was changing into fall. Or when it started getting colder. Or when it was damp. Or when it there was a full moon... well, you get the picture.lol hessalina, boy can i relate
Thanks for all of the responses guys! I visited the Chiropractor last Friday, Dec. 8, 2006. I gave the Chiro a copy of my test results from the testing Neuro along with the letter from the Neuro stating that he suspected "RA" and that he suggested that I be screened as soon as possible. Unfortunately the Chiro looked me over with simple hand position tests, took my medical history and stated the following "I agree with your GP this is a classic case of CTS." I told him that I wasn't arguing the fact that I have CTS, I know that I do, but however I know that CTS can be caused by "RA" and since I'm having a lot of joint related pain and stiffness that I wanted to be screened for that as an underlying cause. Then the Chiro stated that if I had "RA" I would definately have redness at my thumb joint and that it would be hot to the touch. He then proceeded to say that the possiblity of "RA" was nonsense and that I should just treat the CTS. I asked him at the very least if we could do hand X-Rays to look for signs of arthritis in the joints and he stated that no X-Rays or bloodwork was necessary as he was 100% positive that it wasn't RA. I then asked for a referral to a Rheumy and he stated that it would be a total waste of time and he would not give me a referral. Needless to say that I was extremely PO'd when left. I mean, I don't want to have "RA". I just want to be screened for it to see if that might be the underlying cause. How hard is that to comprehend? Like an idiot, in an effort to at the very least attempt to get some relief from the pain I let the Chiro do some adjustments on my wrists and fingers. What a mistake, as I was in the most pain that I've ever been in with this condition yet for the entire weekend. He wants me to come back (3) days per week for the next 2 months for CTS treatments and therapy. Somehow I think he's just after my money. Then again, maybe I'm being paranoid.
Anyway, on the upside I have my first appiontment with a new "GP" on Dec. 20th (next Wednesday). She has said that she would screen me for "RA". Now I just have to wait. I'll keep everyone posted.
I respect chiros but in this case they are not medical doctors..
I would listen to my MD the chiro is not qualified to decide if you have RA or not how could he be?
did he look at x rays... nope he just made a decision based on what?
and yes it does sound like hes after money. 3 visits a week times 2 months ect for me that would be 45 bucks a visit....
Hi Ryan, I have RA and was lucky enough to be referred by my GP relatively quickly despite only showing slightly positive. Why do you have to wait so long to see your GP, are they that booked up?
I live in New Zealand and things are different here, you can ask anyone, even a podiatrist, to give you an xray referral. What I really wanted to say was that despite being a definite RA patient, my joints have never been hot and red. But they hurt! Ice helps a lot I find.
RA is weird, its all over the place and takes a bit of getting used too. It can be very alarming, my knee hurts today for the first time ever, I feel worried about it, but can only hope for the best so long.
Lastly, I had 2 nasty experiences where each hand took in turn to completely freeze up when I flew from North to much colder South Island here, this year. I hadnt been diagnosed. I couldnt use the affected hand at all but ice helped a lot and it eventually went after 48 hours, both times. Very weird. So if you do get RA, expect funny things to go on, actually, not so funny
Good luck, Wendy
[QUOTE=mark1]
I respect chiros but in this case they are not medical doctors..
I would listen to my MD the chiro is not qualified to decide if you have RA or not how could he be?
did he look at x rays... nope he just made a decision based on what?
and yes it does sound like hes after money. 3 visits a week times 2 months ect for me that would be 45 bucks a visit....
[/QUOTE]
Thank's for the replies! Correct, the Chiro refused to do X-Rays (said they weren't warranted), did a few hand tests that made my fingers go numb and came to his conclusion. He said that he did have the ability to give me a referral to a Rhuemy for a second oppinion, however he said it would be a waste of time. After all of that combined with the fact that he laid out a 2 - 3 month treatment plan consisting of 2 to 3 visits per week I pretty much decided that he was just after my money. I don't plan to see him anymore at least until after I visit my new GP and have bloodwork and X-Rays done. Then I'll decide if more Chiro treatments are warranted. Thanks for your support.
[QUOTE=Ta2d]Then the Chiro stated that if I had "RA" I would definately have redness at my thumb joint and that it would be hot to the touch. [/QUOTE]
Your thumb joint would definitely be red and hot? Wow, I wish he would tell all the specialists that secret: it would make diagnosis SO much easier!
Thank you, Dr. Know-Nothing Chiropractor. What Cracker Jack box did you get your diploma from???
[QUOTE=wendyc]Hi Ryan, I have RA and was lucky enough to be referred by my GP relatively quickly despite only showing slightly positive. Why do you have to wait so long to see your GP, are they that booked up?
I live in New Zealand and things are different here, you can ask anyone, even a podiatrist, to give you an xray referral. What I really wanted to say was that despite being a definite RA patient, my joints have never been hot and red. But they hurt! Ice helps a lot I find.
RA is weird, its all over the place and takes a bit of getting used too. It can be very alarming, my knee hurts today for the first time ever, I feel worried about it, but can only hope for the best so long.
Lastly, I had 2 nasty experiences where each hand took in turn to completely freeze up when I flew from North to much colder South Island here, this year. I hadnt been diagnosed. I couldnt use the affected hand at all but ice helped a lot and it eventually went after 48 hours, both times. Very weird. So if you do get RA, expect funny things to go on, actually, not so funny
Good luck, Wendy
[/QUOTE]
Wendy,
The reason it is taking me so long to get into my GP is the fact that we have just switched and transferred our family records a new GP that we haven't made an establishing visit to yet. That being said, I will not be considered an established patient until after the first visit. Unfortunately, until you are established you don't get priority. It's screwy but all of the GP's in this town work that way. The established patients get priority.
Oh well, I've been living with this pain and restricted movement in my hands and wrists for the past 7 months or so. It's not going to kill me to wait until next Wednesday to see a doc that will hopefully listen to me.
Hi Ryan....I've never had hot, red joints. But mine definately are painful! Also, the only blood work that has ever shown anything is an elevated sed rate. And that only started 2 months ago. If your disease is early it won't show on Xray anyways. And if it doesn't, please push for a MRI. That's where my conclusive evidance was.
Good Luck, only 9 more days
[QUOTE=Trixie66]
Hi Ryan....I've never had hot, red joints. But mine definately are painful! Also, the only blood work that has ever shown anything is an elevated sed rate. And that only started 2 months ago. If your disease is early it won't show on Xray anyways. And if it doesn't, please push for a MRI. That's where my conclusive evidance was.
Good Luck, only 9 more days
[/QUOTE] [QUOTE=Trixie66]
Hi Ryan....I've never had hot, red joints. But mine definately are painful! Also, the only blood work that has ever shown anything is an elevated sed rate. And that only started 2 months ago. If your disease is early it won't show on Xray anyways. And if it doesn't, please push for a MRI. That's where my conclusive evidance was.
Good Luck, only 9 more days
[/QUOTE]
Thanks for the info Trixie! I do have another question for you guys about something that I've been experiencing that set in about the same time that all of this hand and wrist stiffness set in. This may or may not be a related issue but I thought I'd throw it out there for your opinions. First off, I get up several times during the night to go to the bathroom. This is a bit excessive however, I've been attributing this frequent urination to the fact that I drink over a gallon of water a day. I do have to say though that I've been making it a habit to stop my water intake by 6 PM. Even so, I still get up 4 or 5 times during the night to urinate. My issue is that when I get up to go to the bathroom I'm fine. However, by the time I get back to bed and lay down my heart is racing and I'm short of breath, like I've just ran a marathon. I don't have any wheezing or anything of that nature, just shortness of beath and my heart races. To top this off, I'm super tired all day long. My wife complains because I can sleep for (9) hours at night, wake up, eat breakfast and then I'll be dead tired and feel like I need a nap. Often I will go ahead and take that nap but even after all of that I'll still feel like I need to take several more naps throughout the day. I'm only 33 I don't think that at this age I should be this tired all of the time. I first suspected the possibility of Diabetes as it does run in my family. However, I've checked my blood sugar at various times during the day with my grandma's tester and it has been fairly normal. Any ideas?
Ta2d[QUOTE=hessalina]Ta2d
The fatigue certainly affects most everyone with RA but the shortness of breath and racing heart sound like something else to me.
You should see a dr immediately to see if this is not something more life threatening like congestive heart failure or anything else. Are you experiencing any fluid retention?
hessalina[/QUOTE]
No, no fluid retention at all. I've only realy noticed the shortness of breath thing at night after getting up to use the bathroom. I'll mention it do the doc though and see what she thinks.
[QUOTE=hessalina]Ta2d
The fatigue certainly affects most everyone with RA but the shortness of breath and racing heart sound like something else to me.
You should see a dr immediately to see if this is not something more life threatening like congestive heart failure or anything else. Are you experiencing any fluid retention?
hessalina[/QUOTE]
I just did a search on this forum and it seems that some with RA have experienced a heart palpitations and shortness of breath as a complication related to RA. It seem to be possible that RA can cause the heart muscle to become inflamed and also can cause light fluid around the heart. Of coarse I may not even have RA but I am experiencing this symptom so I'll be sure to mention this to my doc.
Thanks again
Ryan
Do you have a history of diabetes in your family? That is also an immune disorder, and often the first sign is excessive thirst and frequent urination. My best friend had these symptoms for almost 2 years before she was diagnosed, so it might be worth asking your doctor to test for. Can't hurt, right?[QUOTE=arriscolwell]Do you have a history of diabetes in your family? That is also an immune disorder, and often the first sign is excessive thirst and frequent urination. My best friend had these symptoms for almost 2 years before she was diagnosed, so it might be worth asking your doctor to test for. Can't hurt, right? [/QUOTE]
Yes, Diabetes does run in my family. My grandma on both sides has it as well as some of my relatives further down the line. I will ask about the possibility of Diabetes. Both the neurologist who ran my EMG/NCV study and the Chiro asked if I had Diabetes when I explained my joint pain and other symptoms. I haven't had bloodwork done in (2) years as my old GP didn't want to do any. However, two years ago they checked me for diabetes and the test was negative. A lot can happen in two years so I'll have the new GP check into it along with the other tests.
Ryan
Good good, the sooner you catch something like that, the better off you are! :) Let us know!Hi Ryan - I just wanted to add something to all the excellent advice and support you have received from this great board. Just so you know all the options that exist (because many rheumatologists do not mention this to their patients) please, while you are waiting for your GP appt, check out either of these websites: www.roadback.org or www.rheumaticsupport.net
You may be an excellent candidate for the AP therapy, since you are in the early stage of RA, if indeed that is what you have, although I sincerely hope not! All the best!
[QUOTE=felines4ever]Hi Ryan - I just wanted to add something to all the excellent advice and support you have received from this great board. Just so you know all the options that exist (because many rheumatologists do not mention this to their patients) please, while you are waiting for your GP appt, check out either of these websites: www.roadback.org or www.rheumaticsupport.net
You may be an excellent candidate for the AP therapy, since you are in the early stage of RA, if indeed that is what you have, although I sincerely hope not! All the best!
[/QUOTE]
Thanks for the info, I'll be sure to check these out. The neuro suspected early "RA" and said that I should be screened so if that was indeed the cause I could be treated aggresively early to minimize future damage. Should that be the diagnosis I will give the AP therapy some serious thought. Thanks again!
Boy did I have a scare. I usually go on daily morning walks and attempt to stay in a target heart rate zone. For the last few months off and on I've noticed that my exersise endurance is way down. I mean, I have enough energy for the walk but it seems as though my body or heart is working extra hard to get me through it. My target heart rate zone is 121 - 141. 8 - 10 months ago I would have to really struggle to even get my heart rate up to 121 and keep it there without dropping back down. Well, for the past month or so I've noticed that it takes absolutely no effort when walking to get my heart rate up to 141 and beyond. This morning I was walking slow and I mean S-L-O-W and my heart rate was 140 to 155. Noticing this I'd stop, weight for my heart rate to die back down to about 120 then start walking super slow again and it would shoot back up to around 155. I know that the more daily cardio you do the better your heart rate should be and it should actually be harder to get your heart rate up. I shouldn't be struggling to keep it my heart rate down. Anyway, I started wondering "what the heck" then my mind started wondering even further and I threw myself into a massive panic attack. I mean, shaking uncontrollably to the point that I'm almost shivering, both hands and arms felt like I have electrical current running through them. After about an hour I calmed back down but it scared the crap out of me.
I ended up calling the new GP to see if she could get me in sooner so I could discuss this and the other potential issues such as RA, heart rate and breathing problems. She said that she could move my appointment up to this coming Monday which is two days sooner than what they had me scheduled for originally. I asked why so long and she stated that she sets aside 15 minutes for appointments for established patients. However, since they haven't seen me before and this is an establishing visit, she will need 45 minutes which she won't have unless somebody cancels.
I have had this too. Even getting a shower raises my heart rate[QUOTE=RASara82]I have had this too. Even getting a shower raises my heart rate
a bunch. Certain meds, even OTC ones can do this, though. I
have had 2 EKGs and a bunch of other tests done to rule out
any problems. Doc said it is just one of those things. I never
had this problem before, and I used to have to work really hard
to keep my heart rate up in the target zone. Lately it seems that
it doesn't take much to set it off, and once it is going fast, it takes
forever to slow it down. You are right to get it checked out, but it
may not be anything to worry about. Good luck and let us know
what the doctor says.[/QUOTE]
Sara,
The new doc's office actually called me back and worked me in this morning. I just got back. As far as the heart and breathing issue, she believes that it was mearly a panic attack. She says if I keep having them she'll prescrbe me something for it.
I spoke with her about the CTS and gave her the results of my EMG/NCV Study along with a letter from the testing neuro stating that he suspected early RA. She examined me and agreed that there was something more than CTS going on and said that she did suspect RA but she said that it could also be Osteo Arthritis. She ended up running bloodwork to check for RA, a complete metabolic profile, thyroid and liver. She says she should have the results of the bloodwork by Friday. I'll keep everyone posted.
That's great that the new doc is taking you seriously. HopefullyHey all. I'm still waiting on the results of the bloodwork to come back that I had done last Thursday. Over the past three days both of my hands have been killing me. Both wrists are very stiff, painful and popping when I move them. The same goes for my fingers on both hands. Sunday we went to the grocery store and I was in the produce isle trying to open the bags for the vegetables and my hands weren't working quite right to get the bags open due to the stiffness.
My new GP says that even though the bloodwork isn't back she definately suspects RA or OA. Would I have these issues symmetrically in both hands, wrists and fingers with OA? I thought OA was basically select joints with no symmetric characteristics.
Ryan
hi ryan, that sounds like ra but I hope its not.
Well, I got the results of the "RA" bloodwork. The bloodwork was negative. It's somewhat of a relief but at the same time it doesn't explain the issues with the pain and stiffness of my hands, wrists and fingers combined with painful joint popping and such. All of my other bloodwork including a complete metabolic profile and thyroid came back normal. On the liver enzyme test everything was normal except for the ALP (Alkaline Phosphatase) which was over the limit at a reading of 160. However, for the past 5 years that I've had bloodwork done my ALP levels have been in the low 160's. I think that it might just be a normal level for me. My previous physician said that he believed that it was a normal reading for me and said that most physicians don't worry until readings of ALP climb above the 200 mark. I was reading today however that both "RA" and "OA" can cause the ALP level to be elevated. Since my "RA" test was negative I think I'm going to call her tomorrow and ask for a refferal to a rheumy for a second opinion.hmmm. bloodwork can be negative on you but you still can have RA.. I know my bloodwork is negative but thats because i put alot of cmo thru my body... it keeps the stiffness at bay and also im sure keeps the bloodwork reading negative...
but i have the classic wrist swell and hands affected and feet at times alot of ra symptoms...
uggg how i wish i dont have ra.. no offense to all the ra folks here but.... I'd take my colitis back in its worst form over this heck one surgery and that would end that forever...
not so with ra tho i suppose you could technically get most of your joints replaced... but egads thats a whole lot of pain...... yikes!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I have had sero-negative RA for 2 yrs. Matter of fact all of my labs are neg but my joints on physical exam prove otherwise so watch your symptoms and be careful. Don't let the doc ignore the joint pain. MTX has helped a little so we are adding Enbrel next month. Insurance requires I try MTX for 3 months.
Do you have any redness or swelling?
All my labs have always been negative! It doesn't mean youI have had sero-negative RA for 2 yrs. Matter of fact all of my labs are neg but my joints on physical exam prove otherwise so watch your symptoms and be careful. Don't let the doc ignore the joint pain. MTX has helped a little so we are adding Enbrel next month. Insurance requires I try MTX for 3 months.
Do you have any redness or swelling?
[/QUOTE]
Bonny,
The only redness I have is at my lowest thumb joint right where it meets the palm/wrist area. Every morning the pointer finger on both of my hands is swollen and sometimes my middle fingers are as well. They don't get red but they do get very hard to bend and hurt and pop when I bend them. The same goes with my wrists. They don't get red but they get swollen enough over night that I can't bend my wrists down without pain. This occurs even though I wear wrist splints to bed every night while sleeping. Often the palm and fingers of my left hand will be very warm to the touch. I have about "0" grip strength in my left hand. A grip test shows about 40 lbs in my right hand (the hand/wrist with the least pain and swelling). My grip strength in my left hand is only 10 lbs and it hurts like heck to sqeeze it that hard.
Maybe it is just CTS as my original GP suggested. However, from everything that I've read CTS usually doesn't cause joint popping, stiffness and swelling. Also, with CTS you usually have positive hand position tests that cause numbness and tingling, all of which I tested negative on. My numbness and tingling is very sporadic and not brought on by any particular hand position. It's more brought on by my wrist being swollen.
I've asked my new GP for a referral to a Rheumy for a second opinion and told her that I knew for a fact that some people, especially in the very early stages of RA will test seronegative for RA but still have the disease which is indicated by symptoms. She seemed to get irritated when I told her this but said that she would see if she could get me a referral. (*I've noticed that most doctors are aggrivated when a patient comes in informed of a condition and already knows almost everything that a doctor is going to tell them. My previous GP used to get mad when I would research a condition that I had and tell me that I should stay off of the internet.) She seemed to be more interested in the fact that my Alkaline Phosphates was slightly over normal. I pointed out the fact that elevated Alkaline Phosphates (when this is the only value that is abnormal) can be due to bone diseases and arthritic conditions such as OA and RA. Again, this seemed to aggrivate her because she suspected it might be coming from my liver and wants to run liver tests in three weeks.
Well, I started feeling like crap again this morning. My neck was all swollen and my throat hurt. I went to the doc and wouldn't you know it - I have Strep Throat again. This will make (4) times in the past 7 months.
I came back this morning and did a search on reoccuring strep throat and suprise, suprise, I came across with the following article:
"......................the feared Beta Haemolyticus Streptococcus (BHS).
You may like to know that the BHS bacteria is responsible for other major problems in the body like Rheumatic Arthritis, Rheumatic Heart disease and can also affect the Kidneys. It is reputed to activate a auto immune reaction by the body which triggers a self destruction mode."
According to the article, blood tests for RA caused by a strep infection may not show up in blood work and is usually diagnosed through finding the strep bacteria in the fluid of affected joints. All of my joint issues started right after my first bout of strep (7) months ago that never completely resolved. Now I've had strep (4) times in a (7) month period, while nobody in my household or work with has had the infection. This leads me to beleive that just maybe I could have this BHS bug in my system causing my joint issues (RA Symptoms) and this reoccuring strep throat. I'm no doctor. I have no medical background, however how come I am the one that had to find this out and none of the doctors that I have seen my previous GP and current GP has put two and two together to look for this possibility. How can I get my physician to listen to me and not just tell me to stay off of the internet?
Ryan
Tad, babe,
All you want for Christmas (or Channukah, or whatever) is the book "The New Artritis Breakthrough" by Henry Scammell. Please put it on your wish list! You can order it from Amazon.
And please consider yourself lucky - you caught this in the beginning and before you got on any of the more harsh drugs that suppress your immune system and you know in your heart this is strep related. Many people have an infectious cause to these autoimmune diseases but they cannot put their finger on it. You and I can because of how the disease played out for us. Mine was an abscessed tooth and try to get a traditional doc to agree that the tooth and the PRA are related. Sheesh. These guys seem to only care about what they can see on tests and that really messes up the sero-negative people.
Yes, you can have RA and be sero-negative. And yes, this can be brought on by an infection of some sort that your body cannot fight off. There are Antibiotic Therapy doctors out there that know what to test for and where to send the tests (specialized labs) to check for mycoplasma infection. Strep can live in teeth - guess what myco I tested positive for? Uh huh, strep.
I see that somebody told you to check out www.roadback.org and www.rheumatic.org I post on the road back all the time. When you first start watching those kinds of boards your head will hurt with all the new info you want to try and absorb. Just watch and learn. Post questions. Ask for help. These are all people like us - people that have doc's that won't listen to our pain and desire to get better and resume our lives. I too wonder if how they get paid influences which treatments they offer. (I'm on my eighth doc trying to get the treatment I chose monitored). I just walk away from the doc if they won't help me help myself.
Does AP work - yes - it is a long hard road. Many times you will get worse before you get better - but if you buy into the infectious theory - that is the only way to get better - slowly and surely - by helping your immune system to learn how to fight off these diseases.
In August I was in a wheelchair. I am now back to running 18 hours a day. I've been on the roof putting lights on the house (still not done) taking my baby to a formal tea, Christmas shopping, etc. etc. etc. I have my life back. And I am only half way to remission.
I truly hope this is coming off friendly and hopeful. I am the worlds worst typist and I have 2 people standing over me and hassleing me to get going on things we're working on before the Holidays. I know I am new to this board and I hope I am not offending anybody - I just truly believe in this therapy and the infection connection. After the Holiday, if anybody wants to chat about this - I will. It saved my life. I think the way I set up this post is it gives anybody who wants to know my email address. If you can wait until Monday - I promise I will respond.
Pip
I have a question. When I went back to my GP for this repeat strep infection she commented on the bloodwork results for my RA test. Per the GP she ran both a RA factor and a ANA test with both coming back negative. She stated that due to this results on both test, regardless of my symptoms "there is absolutely no way that I could have RA as I would have with out a doubt have a positive result on one of the tests." Is this true? I know that one can have RA and be seronegative, but can you also have RA and test negative on other bloodowork such as the ANA test?If I have learned absolutely nothing but one thing in all the years that I have suffered with this disease, it would be to trust your gut feeling and allow the margin of error that can be made in a diagnosis.
I think that you can have RA without proof of the tests being positive. The problem can be when the RD does not see a true scientific reason to treat for RA due to test results, which is their job, but it is our health, our lives that are altered by the disease.
If in fact you are of nearly 100% convinced that you have RA but the test results do not support your theory and the physicians will not treat for it then you have to do whatever you can do to preserve your life nad quality of life. In that case, many people turn to alternative medications. For some it works well, for others not so well.
I have a background of severe allergies, RA, OA and Fibro. Because much like you, my test results now indicate that I am in remission but yet I am gaining little to no relief. I did all the drugs for years, plaq, MX, enbrel to name a few and now that my test results indicate that I do not have RA (yippee!) but I am still in the same pain and feel lousy I chose alternative basically because the physicians will not treat me for the RA. Maybe I am right, maybe I am wrong but I do know that a healthy lifestyle cannot and most likely will not cause me much harm.
Sometimes youhave to go with your instinct.
Ryan it is not true! Like I said I am neg so far for everything including sed rate and ana while swollen. Please keep on until you get to a rheumy. I am amazed at how many people with RA have neg labs. Early intervention helps to avoid major joint damage. You are right in that it does not sound like CTS.
The AP that Pip mentioned is also the course I am taking along with RA meds to keep swelling and joint damage down.
Docs don't like for us to do research but we must in order to take control of our medical care.
Hi Ryan,
Sorry about botching your name earlier - I was going by your handle -
Anyway, I'm back and Bonny is 100 percent right. You know in your gut when something is not right and you'd be surprised how many people are sero-negative in the beginning, and not just the RF factors. While I'm no scientist I have come to believe my research that has shown me that there is some sort of cascade effect in these auto-immune diseases. First you get one thing, then another, then another and THEN the tests start coming back positive. And most docs do not want to 1) be told you know what is going on with your own body and 2) you want a specific treatment. I am on my 8th/9th doc trying to get monitored locally on the treatement I wanted. You may have to 'shop' docs until you find one that will listen to you. But please listen to your gut instinct. It will not do you wrong.
Also, Jodejjr - what alternative meds are you using? I intend to 'maintain' my remission (when I get there) with natural antibiotics etc.
Does anybody know how to make this forum show my email address if anybody wants it? I thought I set it up that way but it shows now as 'private'. Did I mention I am a techno-idiot?
Pip
Hey guys! Well, two weeks ago I asked my GP for a referral to a Rheumatologist. I had my Rheumy appointment this morning. He listened to my list of symptoms, did a physical exam, took some x-rays and gave me a diagnosis of Seronegative RA. He said that even though my bloodwork was negative that I had all the right signs and symptoms including swelling, joint redness and heat from inflammation. He said that it was in the early stages and that he wanted to start me on Plaquenil to try to catch it now. He said that the Plaquenil took about 2 months to kick in but that he'd rather start there than to start off with some of the stronger medications that can have bad side effects. I'm supposed to see him again in (2) months.
Is there anything that I should know about the Plaquenil as far as side effects go, from those of you who are on this medication?
Ryan
Ryan, glad to hear you got to see a rheumy today, and you have a diagnosis and drugs. You're moving right along!
I've been on Plaquenil for almost two months. I worried about side effects, but it hasn't been bad for me. Mild stomach upset off and on for a few weeks, but never any nausea. The stomach thing comes and goes now, but it's really not a problem, just a little rumbly tummy and occasional heartburn, and honestly I never know if it's the celebrex or the plaquenil, since both can mess with your stomach.
I make sure to take it only with meals. I've read that if you have a lot of digestive trouble from it your doctor can switch you from the generic form to the brand name and that may make a difference.
My doc said to stop taking it if I broke out into a rash, but that didn't happen.
You also have to have your eyes watched, as it can cause retinal damage, though that's usually at higher doses than we get, or after taking it for several years. I saw my eye doc today and he did baseline tests and he'll monitor me every six months. He said he has only seen plaquenil trouble twice in the years he has been a doctor. And from what I've read, the damage is almost always reversible if caught right away.
Plaquenil has just in the past few days shown me signs that it may be helping. I had progression while waiting for it to work. Of course we're going to have progression, but I was disgusted that it spread to so many more joints so fast. I called to see if I should be on something stronger. They said really, it takes 2 months before we can tell anything. They were right.
After several good days in a row recently--I mean really good days, not just a little better than usual--I thought I would try backing down on the celebrex dose, since I'm taking the max and I'd rather not if I don't have to. Well, one missed pill of celebrex and whammo, still feeling the difference.
It has taken several weeks of combined celebrex and plaq to make things better for me, and getting worse while I waited. The celebrex has made the biggest difference in how I've felt and functioned while waiting to see if the plaquenil would work.
I hope you don't get worse while you wait, but I wanted you to not be shocked if it not only takes a while to make you better, but also lets you progress (not in the good sense of the word) while waiting.
They say it takes 6 months or more to see how much good the plaq will finally do. I see my doc again in a couple of weeks. Before plaq started helping, I figured he'd be putting me on something stronger for sure in January. Now I don't know.
[QUOTE=RKGal]
Ryan, glad to hear you got to see a rheumy today, and you have a diagnosis and drugs. You're moving right along!
I've been on Plaquenil for almost two months. I worried about side effects, but it hasn't been bad for me. Mild stomach upset off and on for a few weeks, but never any nausea. The stomach thing comes and goes now, but it's really not a problem, just a little rumbly tummy and occasional heartburn, and honestly I never know if it's the celebrex or the plaquenil, since both can mess with your stomach.
I make sure to take it only with meals. I've read that if you have a lot of digestive trouble from it your doctor can switch you from the generic form to the brand name and that may make a difference.
My doc said to stop taking it if I broke out into a rash, but that didn't happen.
You also have to have your eyes watched, as it can cause retinal damage, though that's usually at higher doses than we get, or after taking it for several years. I saw my eye doc today and he did baseline tests and he'll monitor me every six months. He said he has only seen plaquenil trouble twice in the years he has been a doctor. And from what I've read, the damage is almost always reversible if caught right away.
Plaquenil has just in the past few days shown me signs that it may be helping. I had progression while waiting for it to work. Of course we're going to have progression, but I was disgusted that it spread to so many more joints so fast. I called to see if I should be on something stronger. They said really, it takes 2 months before we can tell anything. They were right.
After several good days in a row recently--I mean really good days, not just a little better than usual--I thought I would try backing down on the celebrex dose, since I'm taking the max and I'd rather not if I don't have to. Well, one missed pill of celebrex and whammo, still feeling the difference.
It has taken several weeks of combined celebrex and plaq to make things better for me, and getting worse while I waited. The celebrex has made the biggest difference in how I've felt and functioned while waiting to see if the plaquenil would work.
I hope you don't get worse while you wait, but I wanted you to not be shocked if it not only takes a while to make you better, but also lets you progress (not in the good sense of the word) while waiting.
They say it takes 6 months or more to see how much good the plaq will finally do. I see my doc again in a couple of weeks. Before plaq started helping, I figured he'd be putting me on something stronger for sure in January. Now I don't know.
[/QUOTE]
RKGAL,
Thanks for the info. It is a relief to finally have a diagnosis as to what has been bothering me for almost a year. Now though, as the diagnosis sinks in I have to admit it's somewhat depressing. Thankfully, this board has a lot of caring knowlegdable people to keep in touch with.
Regards,
Ryan
Hi Ryan.
I was recently diagnosed with RA in October. I am seropostive with a very high RF, 500, but so far feel only mild pain and stiffness in my wrists, fingers and toes and not symetrically - just to give you a sense of how much variance there is with this disease. I have been taking Plaquenil, 400 mgs. per day, for two months now, with occassional doses of Prednisone and Mobic for pain and stiffness. So far I have experience no noticeable side effects from the Plaquenil. I think it helps to takie it with food as recommended to avoid stomach upset. One thing that was stressed to me is the importance of getting a baseline eye exam (including vision field testing) and follow up eye examinations by an ophthalmologist every six months. Eye damage is rare and reversible if promptly treated, but vision problems when they develop are not immediately noticeable, so stay on top of those eye exams.
Did your doctor prescribe any faster acting medication such as steroids or NSAIDs to treat your flares-- until the Plaquenil kicks in? Plaquenil can take 2 to 3 months before it becomes effective.
Good luck to you.
[QUOTE=noladarling]
Hi Ryan.
I was recently diagnosed with RA in October. I am seropostive with a very high RF, 500, but so far feel only mild pain and stiffness in my wrists, fingers and toes and not symetrically - just to give you a sense of how much variance there is with this disease. I have been taking Plaquenil, 400 mgs. per day, for two months now, with occassional doses of Prednisone and Mobic for pain and stiffness. So far I have experience no noticeable side effects from the Plaquenil. I think it helps to takie it with food as recommended to avoid stomach upset. One thing that was stressed to me is the importance of getting a baseline eye exam (including vision field testing) and follow up eye examinations by an ophthalmologist every six months. Eye damage is rare and reversible if promptly treated, but vision problems when they develop are not immediately noticeable, so stay on top of those eye exams.
Did your doctor prescribe any faster acting medication such as steroids or NSAIDs to treat your flares-- until the Plaquenil kicks in? Plaquenil can take 2 to 3 months before it becomes effective.
Good luck to you.
[/QUOTE]
Noladarling,
No the Rheumy did not give me any faster acting medications at this time. He just put me on 200 mg of Plaquinil twice per day (400 mg total). He did say that it would take about 2 months for it to kick in. He made my appointment for 10 weeks away (mid Feb.) and said that if I didn't see any improvement or got worse during that period that he might try something stronger.
Thanks for your experiences with sides. The main thing that I fear is the "hairloss" possibility. I'm already getting thin as is. Although I do understand that taking the meds is of the utmost importance to prevent further damage.
Thanks Again,
Ryan
Since Plaquinil is a immune suppresent, has anyone one on this medication experienced increased sickness such as colds, flu and such?Hi Ryan,
2 months ago my husband was experiencing pain and swelling in his hands, feet, etc. His GP xrayed him, took blood work and then he called and said"You definitely do NOT have RA". To make a long story short, after another 2 months of trying anti inflammatorys and etc., he finally gave in to our requests to send him to a Rheumy. THEN...AND ONLY THEN WAS HE DIAGNOSED WITH RA!
Don't trust anyone to diagnose or rule out RA except a Rheumatologist........ I wish you luck my friend!
Hi All!
Ryan - have you thought about supplementing with folic acid for the possible hair loss? I was told by Bonny (who posts here) to get perscription strenght 1mg scrip from my doc which I did. It has made an enormous improvement in the 2 months I've been on it. My hair is no longer falling out and is much more silky and managable.
Noladarling - my first rheumy told me that my high RF factors meant my Palindromic RA was severe early onset and that we must be aggressive with it. The lab at the Great U had values for the RF factors. It said that 0 to 30 was normal and 30 to 60 was severe. When I was first diagnosed with Palindromic RA in March of this year my RF was 306. Needless to say, I was freaked.
I refused to believe that I was this sick so I started researching on my own. I was trying to find anybody with RF factors as high as mine. Googling "high RF" I managed to find www.rheumatic.org. At first I ignored them as