Diagnostic Dilemma

bstratt

bstratt

Cleared for Takeoff
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Canuck
At least that's what the specialists are calling me! I'm hoping one or more of the docs on the board can come up with some ideas.

May 10, 2009, I noticed my right knee was a little stiff. I thought mybe I had sprained it or something opening our cottage. By the end of May it was getting a little stiffer so I went to my GP who thought I may have torn/pulled a ligament and so referred me to an orthopaedic specialist. CAT scans, MRIs (both open and closed) and X-rays revealed no structural abnormalities, although my "sinova" (sp?) was inflammed. This was causing the stiffness by over producing fluid (also producing a large Baker's cyst by the way). By July I had had the knee drained twice with cortisone shots. In late August I had arthroscopic surgery to shave the sinova down to normal thickness (they also took a lot of pictures to confirm no structural, bone surface, or other abnormalities). By mid September the knee was stiff again. The orthopaedic specialist now said I had rheumatoid arthritis and told me to see a specialist. By late October I was in to see a rheumatoid arthritis specialist at Northwestern Hospital Research facility. After a bunch of blood tests and being on Prednisone for three weeks this Doctor said I did not have rheumatoid arthrytis nor Lymme's disease and in late November sent me back to the original orthopaedic specialist as there had to be something structural. Further MRI's and CAT scans confirmed nothing structural and in January he told me to go back to the arthritis specialist.

This time I figured I wanted a Dr. House - did some research through friends' family members that worked there and made an appointment with the "best" in February. Went through the litany and he figured it was something called "spono~~" and put me on 1,000mg of Azulfidine (sulfa antiobiotic) twice daily. He also redid the Lymme's test - it was negative and he told me they used a "blotter"(?) test which was 99.9% accurate.

So, I've been on that medication since the end of March. In early April my left knee started to stiffen (now worse than my right), about 4 weeks ago my ankles got sore (you know that feeling the day after you do a bad sprain?) and stiff (cracks sometimes when I walk). It hurts to stand more than 15-20 minutes. Two weeks ago I noticed my wrists were sore (you know when you push yourself up from bed in the morning? My wrists hurt) This weekend I noticed my elbows were sore and stiff when I tried to wash the hair on the back of my neck.

I am concerned about the speed that this is spreading. I think it's obvious by now that it's not structural. I emailed the specialist about this and he said to give it 3-4months on this medication. I tried to make another appointment and the earliest I could get was end of July.

Looking for other ideas.
 
For obvious reasons, most docs here will be very reluctant to give you anything that could be looked at as medical advice.

I'll limit my input to: You need a good rheumatologist. Collect all the data you have at this point (copies of the imaging and lab-work) from everyone who has seen you so far and go for a consult.
 
I'm not really looking for medical advice, per se, but some other ideas to ask the rheumatoligist I am seeing about. He's scratching his head as well.
 
Sounds like whatever the specialist gave you sucks and you should get off it right away. That, and get a new specialist.
 
SCCutler said:
Could it have been "Ankylosing Spondylitis"?

http://www.enbrel.com/ankylosing-spondylitis/your-condition.jspx?channel=GOSEA&subchannel=SASC

https://health.google.com/health/ref/Ankylosing+spondylitis

In any event, I agree that a rheumatologist would be a good person to see. Have played some in this arena. Advice worth every cent paid therefor.
Click to expand...

Yep, that's what he currently thinks, but my back is the only part that doesn't hurt (at least more than normal).

I am seeing one of the top rheumatologists at Northwestern Research Hospital - not sure where to turn next.
 
Barry, I'm not a physcian and I didn't stay at a holiday inn express last night but I'd Dx you with old age.

In all seriousnes I can understand your frustration and concern. The progression to so many joints has to be frustrating. Have you considered going somewhere like Mayo or communicating with the American College of Orthopeadic surgeons?

BTW has anything helped releive the stiffness? I had a smilar stiffness or pain in my wrist when pushing myself up out of bed or doing pushups. Ortho said Gangleon Cysts deep in my wrist not worth taking out somedays its just fine but a bit stiff some days ( not that often) its a real PIA.

Best of luck with this.
 
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Sorry to hear of your problem..

I have no specific background or knowledge to know for sure but the first thing that came to my mind was if you are on any cholesterol lowering drugs.
Statins are sometimes blamed for muscle pain, it might effect the joints also.
Just something to look into.
Good luck..

Jon
 
I emailed the doctor earlier. Here is his response:

"None of this is inconsistent with a diagnosis of spondylarthropathy."

He does want me to come in for more blood work though. It gets frustrating!
 
Reiter's, CRST, seronegative inflammatory rhumatoid arthritis, Ankylosing spondylitis all come to mind.

What matter is if there is suppression availalbe for it....that's why we make diagnoses....they determine therapy and describe future course.

This'll work out, Barry.
 
A lot of the rheumatologic diagnoses still rely on clinical symptoms rather than discrete tests, and a lot can have combinations of symptoms. A good rheumatologist is key, and they are hard to see for some reason (seems to be a common problem across the board). If you mention some of the previously discussed diagnoses, the description of Reiter's went out of vogue when it was learned that he was some kind of Nazi experimenter during the second war. Some people might take offense at this terminology, as when I used the term a few years ago and was quickly corrected by one of our rheumatologists.

As an orthopaedic surgeon I can tell you that symmetrical and multijoint swelling and stiffness is not an orthopaedic problem, and certainly sounds like a systemic problem. The ARA (American Rheumatologic Association) used to publish a book on diagnostic criteria for various inflammatory diseases- it may be available somewhere. Perhaps at least you could match your symptoms to some of the diagnostic criteria. Good luck.
 
bstratt said:
Went through the litany and he figured it was something called "spono~~" and put me on 1,000mg of Azulfidine (sulfa antiobiotic) twice daily.
Click to expand...
I'm on 1,500 mg twice a day for ankylosing spondylitis, plus a few other meds.

SCCutler said:
Could it have been "Ankylosing Spondylitis"?
Click to expand...
I was wondering that, too. ;)

I had symptoms of AS for 15 years before getting the correct diagnosis and being put on effective meds.

Barry, mine affects my back, plus other joints. It's systemic. Most of the time it's under control now, but my rheumatologist (I am fortunate to have a very good one) has suggested moving up to other meds someday when I'm ready.
 
Got the blood work done yesterday and finally got an earlier appointment for next Tuesday the 18th. Hopefully I'll know more then.
 
Sounds a little like my wife lots of guesses and no hits. Are all the neurological tests OK to rule out MS?
 
Have you been tested for other tick diseases besides Lyme? There's Rocky Mountain spotted fever, Ehrlichia, and another, I think it's bebesia, something like that. RMSF attacks the joints, like Lyme.

Good luck, hope you find a diagnosis.
 
Canuck, I sent you a PM just now - but I accidentally sent it before I finished so there are 2.
 
Discussed changes which have occurred over the past six weeks and he was really very unconcerned.

When I mentioned I had been doing research on line and wondered why he had made the diagnosis he did given: a) appears predominantly in males under 40; b) seems to start in the spine, he told me that a lot of the research I had been reading was outdated. He has several patients in their 50’s and 60’s and it only involves the spine in about 50% of the cases.

As to why he made the diagnosis, it was a process of elimination. He is convinced I have arthritis (which in itself is an autoimmune disease). I did not improve on prednisone (rules out common rheumatoid arthritis). I don’t have any skin rashes (rules out psoriatic arthritis). I don’t have gastric distress (rules out some other forms of arthritis). Bones are healthy (rules out osteoarthritis).

I then asked him where do we go if the Azulfidine doesn’t work, and what the prognosis was if he couldn’t find a drug that worked.

He laughed and told me not even to consider that. They had a suite of drugs available and that something would work. The issue was that as they move “up the ladder” of available drugs, the potential for side effects increased and so they always started with the bottom and worked their way up.

Next steps – I’m to increase dosage to 3 grams/day for the next 6-8 weeks (can take 12 weeks for full effects to kick in). If after 6-8 weeks there is no improvement, or continued deterioration, we go one step up the ladder. If there is some improvement, then I kick it up to 4 grams/day.

Next step up is a drug called Methotrexate.

All in all, I feel much better following this meeting. He was impressed by the amount of research I had done, the knowledge I had gained, and my desire to understand and so spent a lot longer discussing clinical data and interpretations. More understanding made me feel better. I was also encouraged when I asked about Celebrex and he told me that wasn’t even on the “ladder” as it only eliminated symptoms and his goal was to suppress the disease.
 
bstratt said:
As to why he made the diagnosis, it was a process of elimination. He is convinced I have arthritis (which in itself is an autoimmune disease). I did not improve on prednisone (rules out common rheumatoid arthritis). I don’t have any skin rashes (rules out psoriatic arthritis). I don’t have gastric distress (rules out some other forms of arthritis). Bones are healthy (rules out osteoarthritis).
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Barry, what diagnosis did he come up with?

BTW, did he do an HLA-B27 test?
 
Diana said:
Barry, what diagnosis did he come up with?

BTW, did he do an HLA-B27 test?
Click to expand...

spondylarthropathy

I asked him about the HLA-B27 test and he said that as people without that gene can develop spondylarthropathy, and as some people with it never do, then neither a negative, nor positive, test would mean much.
 
bstratt said:
... He was impressed by the amount of research I had done, the knowledge I had gained, and my desire to understand and so spent a lot longer discussing clinical data and interpretations. ....
Click to expand...


Yeah Doc, I asked a bunch of pilots what they thought LOL

Glad your feeling up Barry!
 
Your profile says you are in St. Charles IL but your name and your description of the medical run-around you are getting screams Canada. I don't want to start a political discussion, but is this the type of health care our country is headed for?
 
JOhnH said:
Your profile says you are in St. Charles IL but your name and your description of the medical run-around you are getting screams Canada. I don't want to start a political discussion, but is this the type of health care our country is headed for?
Click to expand...

This is at Northwestern Medical Faculty Foundation - one of the premier health care providers in Chicago. https://www.nmff.org/home/default.asp
 
Barry see your PMs. My advice changes if you go to Methotrexate. That is clearly a year by year and requires an SI.
 
Update

Now on methotrexate as the symptoms are progressing geometrically and it was obvious the Azulfidine wasn't working. Also now on Vicodin for the pain. I don't need the vicodin when I'm in the office (where I sit at a desk), but after an hour or so standing the pain is so severe in the ankles that it becomes debilitating.

If the methotrexate doesn't work, the next step is Enbrel or Humira.

I've obviously grounded myself until we can get a handle on this.

Fingers crossed:fcross:
 
Sorry to hear that. Good luck arriving at a medication regime that controls the disease and is certifiable.
 
Bruce, he put me on 4 pills (I believe 2.5mg each) once a week for two weeks, then up to 8 pills once a week. I started last Friday.

I'm reallly, REALLY, hesitant to say it as he told me it would be 6 weeks for full benefits to kick in, but I woke up this morning with what I think is a marginal improvement. Maybe just coincidence or wishful thinking but that 's the first time I can say that in months.
 
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