First ever visit to a rheumy last night.
She says instantly she has thought about Ankolysing Spondylitis. I tell her I have had the blood test and it was negative and in February I had MRI of the IS-joints, having had pains in the lower back and hip since 4 months before that. The wait for the the MRI was that long and ofc when I had the pictures I was painfree for a change. She says MRI should have shown inflammation, but fusing would have been too early anyways.
Then she says since I had so much problems after my huge stomach infection last fall she suspects what it may be. She says that sometimes the body mimics a reaction that is very close to AS symptoms and can take a year, or several years to get rid of it after an infection like that.
She sees no need for back or neck pictures, since when she measures me I have good back movement. Nevermind that I loose some sensation in the right leg at times.
I show her I had a saliva flow test done at the dentist before seeing her, it was on short notice, so taken 10 minutes after I had a cavity drilled and filled. It showed low, but not critically low level passive flow (0.15ml/min). She says since I am on a medicine that can cause dry mouth that the test is in any case worthless and can be crumbled and tossed away. The only sure test then is a lip biopsy, she leaves it up to me if I want to have one. "And Sjogrens cant explain your other pains anyways".
No further blood tests or pictures ordered. She wants me to have a prescription pain killer (Voltaren), as the says non-prescrition pain killers do not work for these kinds of pains, wich she is correct in.
She is positive in one way, she says my GP is being silly thinking anxiety is the cause of this, as anxiety does not cause this kind of problems. As if I didnt know.
All in all I feel dissapointed, maybe I should have not expected anything else.
I will not be taking the pain killers. If they do not think there is something wrong with me, I'll be damned if I am going to medicate myself for it.
I left her with a list of 3 pages of symptoms and family history I had prepared. Maybe she'll read it too for all I know...
gilth,
I'm sorry your visit didn't go very productively! It is dissapointing when we wait so long and then this happens. I know the feeling, unfortunately.
Am I understanding she thinks Ankolysing Spondylitis but feels there should be inflammtion shown in the MRI you had? I have an extended family member with this, but admit I don't know a lot about it.
I'm surprised she didn't want to do any blood tests, or other testing other than a possible lip biopsy. AND that she told you Sjogren's couldn't produce the other pains you have.
I would kindly suggest you see someone else. A good PCP, another rheumy, etc. Have you seen a dentist or opthamologist lately and told them your concerns? Many times they can be a "back-up" support to help with findings. Maybe seeing one of them wouldn't take as long as getting into another rheumy and at least you might get a little more support.
Please know we care and are here for you. Keep us updated, ok? ;)
Melinda
:(
Dear Gilth,
I am so sorry you were disappointed. I am SO painfully familiar with getting your hopes up, then seeing a so called specialist who seems to know less than the laypeople on this board...
For me, I had high expectations for Rheumys and was sorely disappointed by both. One even tried to tell me all my labs were normal, and later I had the results sent to me and there were literally pages of high or low values. This includes a high RA factor. I just don't know how this happens to so many of us!!
Remember that you are a consumer, and you have choices. Don't give your business to someone who does not meet your goals and expectations.
Good luck,
KellyG
Oh it feels so great just knowing you are there, I have no words to describe what heck I would be in if I couldnt discuss this with anyone.
I'm so mad.
I'm reaching some conclusions here and I'm not sure how healthy all of them are, but I'm at my wits end.
First of, I'm starting to think what would have been unthinkable to me before. I am going to quit my 15 years now anxiety medicine alltogether. I have used it for 14 years now at a 4th of the those they are supposed to even be working at all for me, but the 2 times I tried quitting entirely the sideffects kicking in were too severe. (electrical discharges in the brain (socalled ZAPS, I believe) balance problems etc. All the doctors agree since this has worked so perfectly for me that the last thing I should do is quit them. Well....I figure that yes, I have only had 3 (including the current one) episodes of this anxiety syndrome during 15 years. 2 of them while on the medicine. And outside that I have had zero problems. But since medical theory says that the dosage I am using them at should no nothing for anxiety, and since ALL my anxiety symptoms are physical...well then they either are not working or what they are doing it something else entirely. I recently discovered that they ARE used on a much lower dosage than for anxiety in pain managment. And besides, if they are the only cause of my dryness then the sideeffects are too harsh. I am going to my GP, and asking if they come in lower dose tablets so I can ween myself off relly really slowly, and if not, if its safe to cut the tablets in smaller pieces. If this goes terribly wrong it will mean I am screwed workwise, but I dont even care anymore.
Second, if there is no chance my Spine is at risk, seeing as they do not believe my pains are from AS, then I wont be taking precautions for it anymore. I have not at all been overly careful, its not in my nature, more the opposite really, but there is a point at the very highest joint in it where any sudden or jerky movement will lead to excruciating pain for a day or more afterwards. Well, if there isnt anything dangerous to it, I will be damned if I let it stop me doing anything. I figure it means either nothing IS wrong and it would just be good for me to push that joint again, or something is IS indeed wrong, and maybe then at least it will come to light.
I'll be telling my GP the next time I see him, I do not feel like I am being taken seriously, that MY wish is they do an MRI of my spine, neck and jaw joints. If they will hear me and do it, then good, if not its on their shoulders if something is there and pops up later with added damage.
Lately I have had some pain in my right side of chest and back, and I coughed up some black blood 10 days ago. The GP thought it must be a small broken blood wessel due to coughing as he heard nothing on his stetoscope. He did order an X-ray and seeing as I get a bit of stingy pain now in my back and front right side, I'll try and get in to do it tomorrow, it feels uncomfortable. I even had it through a short run of antibiotics due to a ratbite I got. Crossing my fingers its nothing or a pneumonia at most. It started with a severe dry feeling to my lungs, off all things, and felt like the entire lining in my chest was dry and sore, coughing, to start with.
If I can just get that gone and better, I'll be excercising again. And this time I'll pay more attention to if my ancle joints that get this insane crampy pain whenever I walk fast or for long actually swell.
I feel like an idiot hoping for a swollen joint or a positive test of some kind. I feel like an idiot for telling you guys that have diagnoses and know something and what is wrong with you, I feel like I have to end up in an ER for anyone to even notice that when you have fatigue/dryness/neck pain/back pain/jaw joint pain/stomach problems/a broken thermometer inside/lower back pain/nerve pains/sore bones and spots on the body that are hurtful to touch/ALWAYS freeze/balance problems and a host of other symptoms.....you do not necessarily have anxiety. You may be worried about your body acting like its dropped of a cliff, withouth that being anxiety.
Trust me I know. I know anxiety. I used to be the guy when I first got it (and then mostly because of failed medicines) that they would point to and say; "You don't have bad anxiety....THAT guy: HE has BAD anxiety." I'm over that. Seriously.
From the Easier-Said-Than-Done department:
Don't feel like an idiot!
We have all been in your shoes, my friend. All we want is to be listened to and taken seriously. That's almost more important than being treated.
Many of us have similar stories. I think the ai disease medical rule book requires docs to ignore you at first and if you don't go away, then they will do something about it. Rhuemy's can be exasberating, but heads up, er docs are worse. They are prepared for fixable things only. Don't put your hopes on them. You might want to try another rhuemy. Many of us have. I'd be interested to know how many did or did not.
How many of you out there have had to change rhuemys? Has anyone kept the first one they went to?
I changed rhuemys. That's 1 for the change column.
I am with the very first one recommended to me. I was very fortunate. SHE LISTENS.
This is a website about AS.
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001457/
Ankylosing spondylitis
Rheumatoid spondylitis; Spondylitis; Spondylarthropathy
Last reviewed: June 21, 2011.
Ankylosing spondylitis is a long-term disease that causes inflammation of the joints between the spinal bones, and the joints between the spine and pelvis. It eventually causes the affected spinal bones to join together.
Not something you want in your Christmas stocking.
Hugs
Elaine
So sorry you had this experience with the rheumy you saw. I have had similar experiences with the PA I saw for a year and the rheumy I saw once... and both ignore that my eye doc found NO moisture at all in my eyes.
My new strategy for finding a new PCP and rheumy is to get recommendations from people I know and do some searching on line. Found a website called health grades that has reviews on many doctors... been using that as a guide, since it also tells you what insurance they accept and where they went to school.
Hope you can find compassionate, knowledgeable doctors.
gilth,
Think I'm going to call a meeting to ban the word "idiot" from our site. ;) Just kidding.
Seriously, I think I know exactly what you mean by hoping for something to show in a test to be able to prove to a doc the kind of pain and issues you're seeing. It's so frustrating not to be taken seriously! Me and many of us have been in that situation and so we understand. I'm one of those whose blood tests look perfectly normal, and yet I have every symptom. I was diagnosed on symptoms alone.
Your idea of insisting some things from you GP sounds like a good start. If they won't, find another doctor. I know it seems like such a process to go from one to another, but sometimes we must keep trying until we find one who listens and cares.
Keep up the fight, and know we are here to listen. ;)
Quote from: gilth on November 17, 2011, 05:41:20 AM
First ever visit to a rheumy last night.
[ . . . ]
All in all I feel dissapointed, maybe I should have not expected anything else.
I will not be taking the pain killers. If they do not think there is something wrong with me, I'll be damned if I am going to medicate myself for it.
I left her with a list of 3 pages of symptoms and family history I had prepared. Maybe she'll read it too for all I know...
I have been thinking all day about your disappointment with visiting the specialist in rheumatology, partly because my appointment with the rheumatologist I saw, was also disappointing and left me flat.
It seems that basically your rheumatologist consult, that took so many years to arrange!, did the following things:
a. She did agree that the symptoms you described sounded like ankylosing sponditis. From her experience and training, she found that the symptom picture *also* suggested a couple of other possibilities,
that needed to be ruled out first. That's a *win* for your powers of self-diagnosis.
b. She did agree that you were in a significant amount of pain, and wants you to get back to a more comfortable existence by medicating the pain. Would you agree to take the pain killers if she had agreed that you had ankylosing spondylitis? When did she want you to return?
c. She did *not* find physical reasons for joint pain, so couldn't go along with an MRI. Gil
th, that's a crucial problem with me, too. I swear I have pain in my left hip and sacro-iliac joint on the left side that is at a 10. I had xrays; the xrays showed
nothing! My doctor didn't say there was nothing wrong with me, or that I didn't deserve care, or that I was malingering. He did seem to say that it wasn't SjS, or rheumatoid arthritis, or even osteoarthritis beyond the normal for my age. He *did* say it was probably Fibromyalgia.
Fibromyalgia is a real disease with real pain (particularly in the tender spots). It's just that Fibromyalgia has this nasty property of not showing anything in medical tests, except for the specific research criteria of the 16 or 18 tender points.
Are you able to keep seeing this rheumy? Surely she gave you a follow-up appointment, if she put you on a pain killer. Often doctors *don't* suggest anything for fibro pain, or the physical pain that doesn't show rheumatic deterioration.
Also, I do the same thing you do, arrive with a lot of history. A doctor has to break down that history into symptomatology that fits diagnostic criteria, and symptoms that bothered you at the same time but that don't add to the picture.
You did get a major confirmation from her, an indication that she took you very seriously, in her dismissal of your GP's constant, continued interpretation of physical complaints due to "anxiety."
I think there's a good reason you don't want to return to her, and don't want
to take the pain killers. I haven't yet heard that reason in what you have said about the visit. Did you need a clear diagnostic term?
It's such a struggle to get to the "right" doctor, isn't it, only to find that what you expected after getting there didn't happen.
Best,
Soycoffee
Quotea. She did agree that the symptoms you described sounded like ankylosing sponditis. From her experience and training, she found that the symptom picture *also* suggested a couple of other possibilities, that needed to be ruled out first. That's a *win* for your powers of self-diagnosis.
I guess you are right, but she has not ordered further tests for now. But yeah, notch up a win for my self diagnostic powers ;)
Quoteb. She did agree that you were in a significant amount of pain, and wants you to get back to a more comfortable existence by medicating the pain. Would you agree to take the pain killers if she had agreed that you had ankylosing spondylitis? When did she want you to return?
I would. And I've had a second thought I'll admit. Friends told me I was wrong about Voltaren being just a painkiller. They say its actually an NSAID drug, seeing as it's also anti-inflammatory. And I will try them. She hasnt prescribed them to me for a specific use other than when at pain, but I guess thats normal, and it means I wont have to use it on a regular basis. (I'm a bit worried about dependancy) She hasnt set a new appoinment, just told me to contact her again if I got worse again.
Quotec. She did *not* find physical reasons for joint pain, so couldn't go along with an MRI. Gilth, that's a crucial problem with me, too. I swear I have pain in my left hip and sacro-iliac joint on the left side that is at a 10. I had xrays; the xrays showed nothing! My doctor didn't say there was nothing wrong with me, or that I didn't deserve care, or that I was malingering. He did seem to say that it wasn't SjS, or rheumatoid arthritis, or even osteoarthritis beyond the normal for my age. He *did* say it was probably Fibromyalgia.
Well she actually just said it was most likely a result of the stomach infection I had last fall. She said at times the body will react to an infection like that in a way that mimics AS amongst other Auto-immune diseases, and that it can take the body up to several years to rid it self off. In my opinion if that is the case, I must be very good target enviroment for this, as I believe this is now my third major "flare" like this.
QuoteAre you able to keep seeing this rheumy? Surely she gave you a follow-up appointment, if she put you on a pain killer. Often doctors *don't* suggest anything for fibro pain, or the physical pain that doesn't show rheumatic deterioration.
Yes, she was very clear that I was just to contact her again at need. But again, no set follow-up, no.
QuoteYou did get a major confirmation from her, an indication that she took you very seriously, in her dismissal of your GP's constant, continued interpretation of physical complaints due to "anxiety."
I agree fully. Even more now I had some time to think it through. It'll be interesting to see my GP's reaction once he gets the papers from her.
QuoteI think there's a good reason you don't want to return to her, and don't want
to take the pain killers. I haven't yet heard that reason in what you have said about the visit. Did you need a clear diagnostic term?
I hear you. As I said, since they are apparently not just painkillers, I will use them. I suppose I wanted either a disgnostic term for my illness, or further investigation (MRI, blood work etc). Thats whee my dissapointment stems from. Maybe I am a bit naive, and a first visit like this is pretty normal procedure.
Hi gilth,
I will say soycoffee gave a well-thought post with encouragement, ideas and a plan of action. Good job!
We can get so upset when an appt. doesn't produce what we want-answers! Sometimes it takes a little longer to get at the root of our problems, and it takes a huge amount of patience. Which is hard when we are in pain.
I hope when your GP gets the notes from the Rheumy, they can help you. Please remember some meds are very necessary for us. I wish I wasn't taking anything, but that isn't the case. I need them to keep me at a level I can enjoy life a little.
Take care and keep us updated.
I love this forum! 8)