“Frankly, I have no idea.”, “your symptoms are perplexing”, “Never in my 30 years…”
My MRIs show interesting things: tenosynovitis of flexor tendons and extensor tendons of several fingers, flexor pollicis longus tenosynovitis as well as soft tissue edema. And an osteophyte on a middle finger joint (Short version)
That means to me that we are still looking at PsA. It can have all relate. But my doc is not putting it together, he says there is data, but that none of it supports the other in order to reach a diagnosis. We are waiting until my wrist impressions are back from the Radiologist. If they show bone erosion, then he says he knows what to do. If they show more of the tenosynovitis, then off to a colleague at The Ivory Tower (Hopkins) I go. I also have these tender nodules that develop on my fingers that he believes SHOULD be vasculitis, but my labs down support the diagnosis. Mixed connective tissue is another diagnosis we are batting around, but again the labs (CRP and ESR) are normal. I have a high ANA (in the 2000’s, I don’t remember exact number), high rheumatoid factor and RNP. It’s weird.
I love my doc, he is bright, honest, and supportive. I just hate that he can’t figure this out for me.
Grumpy Cat- We all know that labs, imaging, and symptoms don't always fit well together. The truth is that for many of the autoimmune diseases the treatment is the same, regardless of what the final diagnosis is.
I would rather work with a doctor who isn't too sure and willing to send me on, then one who "knows" everything, and won't accept that s/he could be incorrect. I had an eye doctor send me on to specialists a few years ago for more intensive testing. No final diagnosis other than inflammation, but that's okay too.
I have found that a stiff middle finger can be of great help with this stuff. Speaking of mixed connective tissue disease repeat spinal tap on "tap" for me today.
I have found that a stiff middle finger can be of great help with this stuff. Speaking of mixed connective tissue disease repeat spinal tap on "tap" for me today.
It seems that trying to diagnose this disease is like trying to put jelly on a water balloon with only one hand. No matter which utensil you try, the balloon always rolls away before you get any results. It's very frustrating to deal with. Hope the sun shines on you today and charges you up so you can continue on this long journey. My thoughts are with you.
My favorite doctor ever may well be the hand surgeon who looked at the mess my palm had become after someone else had done a routine surgery and said, "I've never seen anything like this before. I don't know what this is." Someone who is secure enough in his ego to admit he doesn't know everything, who is willing to look at books and make phone calls before deciding what to do, that's my kind of guy. Frustrating as it is to not get answers right away, spare me the cowboys who think they know everything.
Hummm...definitely not encouraging but at least you have a good doc working on it.
There's a gap between symptoms and tests for sure. It happened to me today ...doc says tests are looking good but the disease has progressed considerably in the last 2 months. Doc says they don't add up but he's going with my issues rather than the tests. I'm sure your doc will work it out for you.
How’s your blood sugar? There’s a positive correlation between people with psoriasis and diabetes. The damage your described in your post can be caused by diabetes if left uncontrolled. Aslo, biologics can cause issues with your blood sugar.
Oh, Grumpy. You’re right. Those are words you never want to hear from any doc. Like “your is a very interesting case”.
The best news in your post is the fact that your doc is willing to refer you on to his Ivory Tower colleagues. There are plenty of docs who hate admitting that they don’t know. Thank goodness yours isn’t one of them!
Yep, I had the “goodness, you are a very interesting case” for my stomach issues - I was just so very lucky I could do a simple variation on already approved meds, that worked very well, such that a definitive diagnosis was not required.
I know though, grumpy, that you haven’t had that fortune - entirely. When the meds aren’t working, or only a bit, trying to figure out what it is to get the treatment right is really important. I’d love to have the expertise to help, but it seems fairly obvious the guys at John Hopkins will know more!
As patients we want answers and not to be found "perplexing" or "unusual". I've heard that artists hate it when people look at their work and say it's "nice" or "interesting". We all want the same thing--a definitive answer.
I am really lucky to have my doc. He has also said, “i am with you, and i’m not giving up.” Those are the BEST words to hear from your doc! He forwarded my info to JHU on Tuesday, so i await their call.
I finally have an excellent team of docs. I wouldn’t trade them for anything. Saw my PCP this week and she told me things i needed to hear. Nothing i wanted to hear, mind you, but definitely things i needed.
There is nothing like having docs who remember you when you come in, remember what you do for a living, ask about function, and remind you of how far you have come. I am beginning to realize that i may never “be fixed” (that is my dream, “i just want to be fixed”); but there may come a time where this isn’t in the forefront of my mind and thoughts each and every day.
How was your LP? Thrill a minute, I’m sure, but results yet?
tntlamb said:
I have found that a stiff middle finger can be of great help with this stuff. Speaking of mixed connective tissue disease repeat spinal tap on “tap” for me today.
You’re right, Grumpy. Simply knowing that you have good docs you can trust, and who are looking out for you, is brilliant medicine. I’m so happy that you’ve managed to arrange this for yourself. That alone is an accomplishment!
The thing is Grumpy that you’ve found a doc that wants to try and figure it out Sounds like you are a puzzle and some docs love that challenge…hang in there x
But as my amazing husband reminds me when I get brain fog…
Well now you just know how everyone else feels their whole life… (Referring to him suggesting I’m smarter than him). Grumpy, I suspect you would be too!
He suggested that perhaps modifying my expectations might be worthwhile…
My modification of expectations had been to be comfortable enough, and happy enough (in the consideration that both TNF and pain causes depression), that my presence in my family is positive, and I enjoy life.
I’ve been extraordinarily lucky to get more than that, and am grateful every day. I know it may run out any day…
But I haven’t had a day without mild opioids in about 6 weeks. I’ve been trying to put on weight and failing for six months (I’m not underweight - very healthy, just a bit aware how useful it is to have a reserve when you get sick). I watch everything I eat - to try and maximise nutritional value whilst diminishing flares to try to put on weight (I’m sure you know that routine!)
I know you’ve been doing this longer than me, and as an RN know more. But fixing is probably a while away. Perhaps stem cells, maybe generations.
In the meantime, I wish you all the strength that I know you have. If there is anyone that can persist, it is you. And it sounds like you have a great medical team - well deserved
My fasting numbers are well within normal range; in fact I usually run a little low. Even though I’m a physical mess, I still watch the diet like a hawk! I exercise some, more than most but not as much as I should. I did find out that my compmay pays for gym memberships, and the approved gym is very close. I will be joining, and I even have a buddy! Diabetes isn’t a big worry for me genetically, or based on my health, but I know it can grab anyone.
mataribot said:
How’s your blood sugar? There’s a positive correlation between people with psoriasis and diabetes. The damage your described in your post can be caused by diabetes if left uncontrolled. Aslo, biologics can cause issues with your blood sugar.
I did find out that my compmay pays for gym memberships, and the approved gym is very close. I will be joining, and I even have a buddy! Diabetes isn’t a big worry for me genetically, or based on my health, but I know it can grab anyone.