My Rheumy Appointment

I have been putting off posting about my appointment because I feel more confused and very frustrated! I was planning on posting today, and now that My sis did...I am going to go ahead and post also! I am really going to try and post without the negativity I am feeling! Please bear with me!

We waited 3 weeks to get to see this doctor and drove 3 1/2 hours to get there....When we got there I was quite impressed with the office. We had heard it was a state-of-the-art facility and we were going to see the founder! We first went to the lab and the gal that drew our blood was excellent....she got the vein on the first try, but it seemed like she was taking a gallon of blood! She told us that we were lucky to be seeing the doctor we were, because he was her doctor and he was very good. Also, that he took the time to explain things. This made me feel even better. Then it was over to x-ray. Another very nice lady. She said she was going to x-ray mt hands and one other place. She asked me what was bothering me the most right then. I told her my lower back, so that was the other place she x-rayed. Then I waited for almost 90 minutes, but felt like this doctor would be worth the wait, according to everyone. When I finally got in, the doctor already had most of my bloodwork and my x-rays. He started the exam...he felt my hands, fingers, wrists, knees and poked around on my neck, shoulders and back. Then he told me that he could not say for sure I had RA. I think my jaw hit the floor. Four weeks ago when the doctor did the RA test... it was a doctor filling in for my PCP because she was on vacation. When I called in for my results, there was a lot of concern in his voice. I was told that test result that were 35-45 were considered high and over 45 were considered extremely high and mine came out 57. He said that he was sure it was RA and because it was so high he was pretty sure there was at least one other autoimmune disease going on along with it. When my PCP came back, she was extremely concerned, also. When I asked him about the high results, he asked me if I had any kind of an immunization recently and when I said no...his answer was "well that can raise the RA results". I told him again that I have not had any and 4 weeks later now, the test came back still a 54 here at your office. He said, in a condescending tone "Well, I have been doing this for a long time and I am just not feeling it in your hands. I need to see you when you are in a flare." I told him that I had been on steroids for 3 weeks and that my joint pain was nothing like when it flared, I hurt and was stiff in the mornings and had occasional twinges but was doing better as far as my joints....but I was hurting EVERYWHERE else and just feeling terrible. That is when he told me, "Well that is probably the Fibro....you tested positive in most of the fibro pressure points." Up until that moment, I did not know I had fibromyalgia. Also, he said that I have disc narrowing at L3-L4, L4-L5 and L5-S1. Before it was only L5-S1....funny thing is since the appointment I have found through my own research that RA in the spine can cause disc narrowing and if it is happening in the cervical spine, which he did not x-ray, it can be fatal! So....now that I have rambled and rambled....sorry about that....the Rheumy is going to go on a 2 week vacation in the middle of August so since he wants to see me in a flare...he put me on a low dose of steroids for another month to keep me out of a flare until he gets back! In the meantime....I told him that I feel terrible and all I do is sleep, but not for long periods because the pain wakes me up... and his answer was that it was a good thing I was currently unemployed, so I can sleep when I need too. And that was it....take the steroids...then wait for a flare....and drive 3 1/2 hours when I am in the flare to see him!! UUUUUUGGGGGHHHHHH!!!!!

Shannon, my sister didn't get any further with what is going on with her either....so here we are in the "House of Pain" just waiting to see what happens next!

Again sorry about the long post and hope you are all having a LPD! Take care of you...all of you!

Hugs,
Beckey

Beckey

I can relate to the sleep problems, I wake up constantly all through the night because of pain, I have an adjustable bed and I just grab the remote and reposition it a little to get a bit more comfortable and it is back to sleep for another hour or two till I wake up again! So You are not alone with the sleep problems I have been fighting that for years and years, I have sleep apnea and they noted that I wake up allot for seeming no reason during my sleep they call it "spontaneous arrousals" I explained that it was because of the pain and can't stay in one position for a long period of time. You might already know this but steroids also has an effect on your sleep, many people complain about nor being able to sleep properly when on low dose steroids! So that might also be having a effect on you! I know when I am put on Prednisone, it is a real double edge sword, it helps me in so many ways, but some of the side affects are horrendous! Anyway straydog is right and you certainly do want to make sure that you get a correct diagnosis! It is the waiting that is the frustrating part, like I mentioned to your sister in her post, hang in there, your not alone in this! We're all here to listen and give you support!

White Beard

Hi Becky,

Ugh. It sounds like you had a very frustrating appointment. I think we've all had our share of awful doctors & this may just be one of yours. Just because the doctor is well known/respected doesn't necessary mean that he's any good (in a bed-side manner type of way). One of the worst docs that I saw early on in my plight was a well known neuro-ophthalmologist at a renowned teaching hospital. He was just awful. He treated me horribly, didn't do a good exam, wouldn't listen to anything I said. Ugh. I just remember how frustrated and angry I was after that visit... Needless to say, I did not go back & instead found a new doctor. I don't know if this is an option for you, but I'd seriously think about looking for a different rheumy. Something just doesn't seem right & it doesn't sound like he's giving you the attention you deserve.

hugs,
Skeye

It seems like the doctors that are really good at what they specialize in, seem to have very terrible manners (I've had a GI doctor like this in the past, but he did find the answer to my stomach issues when other doctors couldn't). But if he's not sure you have RA, then I would be very happy and relieved, RA is a very very terrible thing to have, I've recently been told by 2 doctors that I have it(GP and Rheumy), and I refuse to get treatment for it cause I'm scared to death of the RA medications, actually I have an appointment this week to decide what meds we're going to try and I don't want to try any. The more I read on those medications, the more scared I get, plus I'm on 27 years old, this shouldn't be happening. But I understand the not knowing, then adding a doctor who doesnt give you any answers and makes you feel bad about yourself doesnt help. I would give this doctor a little longer, and if things dont work out, then you can move on to another Rhuemy. But if he is making you feel really terrible about yourself, then remember that there is no law saying you have to stay with him, and with as much depression that already comes with chronic pain, I know you don't need more.

-kitty

Hi Everyone and thanks so much for responding! I really do appreciate it, because I am so stressed right now! I woke up today feeling as terrible as ever and I am just tired of it! Please know that, more than anything I want the correct dx, and to get started on the proper meds to make things better...I am just not pushing for a dx any dx! I prefer that the dx was not RA because it is terrible and the meds scare the heck out of me...but so much was leaning that way! My first flare was soooo bad, I can not imagine driving 3 1/2 hours that way....and it was different then any pain I have ever felt! Every joint in my body hurt so bad, I wanted to die! Even my jaw was so bad that I thought I had a terrible ear infection! My SED rate was also really high, which was the only test they did because of my lack of insurance at the time. After 3 days on steroids, I felt much better. That was in May. After my 2 weeks on steroids, it took about a month before I had a flare again and this time they did the RA test. Like I said it came back high and I have been on steroids since. 4 Weeks later, at the Rheumy, it was still high. So he is keeping me on steroids to make sure I don't go back into a flare until he gets back from vacation. This is really irritating....I mean I understand that Doctors need vacations too... but I am now going to miss a second mini vacation back home to Colorado this weekend. Our friends and my husband are going, but I feel way to bad to travel! I just feel like I am being shuffled around and put on the back burner like I do not matter! I mean what kind of comment is "Well it is a good thing you are on unemployment right now!" I just wanted to cry....but I understand that many people have to try and work through this too! Just so tired of feeling sooooo bad!

Sorry I am rambling again! Thanks again for your responses, you are all amazing people! Also, Dani, I hope you get to feeling better!

Hope everyone is having a LPD!

Take care,
Beckey

Hey Beckey , You post as long as you need to . A wise person once told me '' let us care about you when you need it '' , and she was right !! But I understand that is so frustrating when the doctor doesn't really answer your important questions and kind of leaves you hangijng , that is quite frustrating for sure . So please post as often and make them as long as you need to , I open my heart to you as you did to me my good friend , we are here for you , and we are interested in what you want to say . So please continue to come to us ( your family ) whenever you need to . A Whole Lotta Love ! Mikel

Beckey go back one more time and if you are not happy with the dr then try to find another rheumy. They are weird ducks, even the one I am seeing that I just love, he is just weird. But, he is an excellent dr. He has dx'd me some problems the first one missed. But, it was not done on my first appt either. The first rheumy I saw was more interested in my pain pump and how it worked than what I was sent to him for. Two visits with him and I was done.

My sister has RA and she cannot take any of the newer drugs on the market because of her lung situation. She is on Prednisone and has been for years. I told her if the RA doesn't get her joints the Prednisone will over time. She is on a high dose and has been a very long time. The newer drugs out do come with potential side effects, all medication does, we just have to pick and choose which battle we feel like fighting. Keep in mind if one person reported a problem with a medication they have to list it as a possible side effect. That problem may never happen again but it does have to be listed. The people on the RA forum can give you good info on RA meds if you end up going down that road. One of members on here has RA and I am drawing a total blank on who it is, jeesh brain fog. If I can remember who it is I will post it for you.

In the meantime take care.

I tend to agree with Susie/Straydog,
give this doctor another visit..Once he knows what a flair is for you it might bring you closer to a dx.
I will be hopeing it's not RA as the meds for that are bad, (My grandma had RA) and maybe you could
do better with Steroid injections, might be something to consider over steroid pills..might be something
to ask about,,,Hello Kitty gave some good advise as well and please visit the RA forum, they are nice
and I can attest to the fact they are and they won't bite you...lol just a jokin...
Hang in there for now, keep positive and Prayers and hugz, okay...
((((((((((((((((((((((((((((((((((((((((((((Beckey)))))))))))))))))))))))))))))))))))))))))))))

 I am so sorry you had such a frustrating experience when all you wanted was to get some answers. I, like you, have been down a long road of Dr.'s that just don't listen to what I know about my own body. I'm in the process of trying to get a new Rhuemy because the last one I had has wasted my time for the last 9 months. I am worried I have RA as well..and the waiting, and pain is enough to pull your hair out, isn't it? Hang in there. I hope this Dr. just checked out mentally for the day and needs his vacation but will come back in a month with all the answers you need. Stay strong and hang in there. Easier said than done, I know. I will keep you in my thoughts, try to keep yourself busy in the mean time, so the month doesn't take so long to go by. Heather

Thanks for responding Dani! Do not apologize for not stopping in sooner....I know you were not doing well and I am soooo sorry! I know that you are thinking about us even when we do not hear from you and we will hear from you as soon as you can! I sure do hope you are feeling a little better!! I really hope for a lot better but I know that is a stretch for most of us! We settle for a little and keep hoping day by day for a little more! Anyway, yes, I am just so tired and so down....I guess I just wait! I told him it was so far to drive and hurt so bad, just with my back problems, that I could not imagine trying to get there in a flare, if it was anything like the first one I had. Again, I got a kind of insulting answer....he said..."I treat many people from your town and even farther! That is how it is in Nebraska." It just made me feel like I was being a big baby and everyone else could do it.....so I could too! I have always felt as though I had a very high tolerance for pain....I don't know now....maybe that has changed....maybe it isn't as bad as I think it is! I just feel so confused right now! Oh well, going back to bed! Thanks again Dani and please take care of you!!!!

Hugs,
Beckey

Hi antbuggey, Sorry I haven't been posting much lately, I have sero negative arthritis although my rheumy now calls it RA and THE MOST FRUSTRATING THING about IT IS THE WAITING!!! You wait to see specialists, wait for medication to work, (sometimes 6 months) wait for medication to get out of your system if it doesn't suit you, and the whole time you're dealing with pain.

It is a very frustrating disease, you need a rheumy you can talk to, whinge at and who listens to you. This guy may be renowned but if you don't like him then find someone else. I wouldn't be happy driving 31/2 hours to see someone I didn't trust!

See him one more time, see if you just caught him on an off day, and then decide. If its fibromyalgia can that be treated? Does that respond to steroids? What dose are you on? Does that affect your spine. I know RA is mainly upper spine and neck, my lower spine pain is from an injury and my reumy thinks its osteoarthritis I have going on there. So sometimes we can have many combned symptoms which make it even more difficult to diagnose.

Ms Kitty is right the meds I take for RA are very toxic but they start you out on low doses and try to control your symptoms. I know these days they treat you aggressively to stop the permanent deformity from happening, it is very scary taking these meds. They really muck up your immune system and have so many side effects but to be saved from permanent disability, its worth it.

Any way I won't rave on, wait for him to come back, stop taking your prednisone and see what happens. When you flare they can do MRI's and see exactly where the inflammation is occuring. It gives them really good diagnosing skills, not pleasant for us though.

Goodluck with it all, I sincerely hope it isn't RA. I wouldn't wish it on anyone, I'm having a really hard time dealing with it on an emotional issue, one of the reasons I'm not posting so often. Hard to reconcile who I am now with what I was or was able to do, a lot of grief involved, but I'll cross my fingers for you, golitho

Hi Becky, I'm probably not the one to be talking to about reassurance , like so many on these forums, my RA is not really under control and I've been tried on many different combinations.

I agree the anti seizure drugs sound awful, if the steroids are giving you some relief, it makes me feel that it may be RA related? Prednisone is a wonder med. I've had pulses of it when I've been flaring they give you 1 gram at a time so its a massive dose, sorry don't know the US equivalent. I had 3 pulses with my last flare and it really settles down the infammation.

I felt much better once they put me on the anti TNF inhibitors with methotrexate. This combination gave me the best relief but unfortunately didn't last. I've had RA for nearly 4 years now. I'm currently on Orencia (abadacept) its an infusion I have once a month and still on mtx and prednisone. This is giving me some relief and I'm certainly not in the pain I was but I am still fairly limited with what I can do.

I have to go and pick up my son from school, I'm in OZ so in a different time zone but I will keep in contact and check up how you are doing, best wishes, golitho

Thanks Golitho, I hope that you are doing well! Sorry to hear that the combo that gave you the best relief did not last! I have to agree to the point that it sure sounds like RA from what I have heard about prednisone and RA. Before, when I took it at the original flare for 2 weeks it helped a lot and after I tapered and stopped it was a few weeks before I had a problem again. I started at 3-10mg pills a day for 5 days, went to 2 a day for 5 days and then 1 a day for 10 days. I was also told at that time to go ahead and take all 3 or 2 pills at the same time. This was the regiment the second time, also. Which took me up to my rheumy appointment. The rheumy put me on a lower dose.....5 mg pills and I take 3 for 10 days, 2 for 10 days and then go to 1 for 10 days. Also, he has me spacing them out through the day. The weird part is this time I can tell when I need to take my steroid, kind of like pain pills! I can feel the stiffness and swelling. I take my last one with my dinner at night.....and when I wake up in the morning, I am very stiff and sore in my joints. (not just my joints, but my joints are the new problem) My knees and hands are really bad. My knees feel like they are 3 times the size they should be. Does this make sense? I am sorry it is hard to describe what I mean, because I wake up hurting every morning....well, actually, several times during the night too because of other problems. But when I got the first flare it was definitely different! My normal pain does not affect my joints so directly like that. So, after this first 2 times and the steroid regiments the joint pain was not there....but this time it seems like it is starting every morning again! I guess I am not sure why this is important....just because it is different! I have a feeling that I will not be waiting very long for that flare after I go off the steroids because it feels like it is just lurking there waiting to jump out and get me! LOL Again, sorry to ramble and to push you for so much info....I am just so frustrated! AND again thanks so much for your advice and sharing your knowledge of RA with me!! Sending good thoughts your way! Take care of you!

Thank you Tina! You are another one of those amazing ladies....with soooo much going on, but you still take the time to talk to and help others!! That is the type of person that I strive to be but I have currently failed miserably because I am so wrapped up in my own stuff right now and I feel very badly because of that! Also....pretty new to this "fibro-fog" and REALLY hate feeling like I can not even concentrate on small things! Just know that I do appreciate the "family" I have here and I hope to be a better "sister" to my real sister here and the rest of my siblings on HW real soon! LOL! Sending good baby thoughts your way! Take care of you and the precious gift you are carrying!

Hugs,
Beckey