Got my results back on the auto-imm labs. No dice. She said I'm at the lowest number in the normal range so not diagnosable; borderline. Sheesh. I'm very very happy about that! Might not move me forward, but leaves less in the basket to choose from! Yea! Your Poise comment cracked me up - people at work asked what was so funny but I couldn't tell them bc I kept giggling lol
Well, congratulations on joining the officially "weird" case group. My next crazy idea: a genetic inability to process something or other.... (like a mineral or a nutrient). This comes from watching too many "Mystery Diagnosis" programs. I'll have to go do some research... lol.
I realized my, ah, strange "relationship" with steroids some years ago. I'm asthmatic, and although you wouldn't notice most of the time, all I need is an upper respiratory infection - and voila. Prednisone was a life saver - literally, but this led to embarrassing problems at work. I remember being in my 20s and having major "issues" as a result and running into a bathroom in tears while sobbing to myself that I was "too young" for those problems. I'd be happy to make an add for Poise any day.
looks like i'm back on the AI road, karen - you're a smart cookie! the dr called last night to say the rest of the lab work came back (I didn't know there was anymore lab work out there!) She said my ANA titre (not sure what that means exactly) just came back positive and combined with the symptoms and the borderline thyroid numbers, they're wanting to get me in to see the best rheum we have here. Fortunately, my nurse aunt works at that particular office. she said it takes months to get in with them but i told her i can't take much more of how I'm feeling and if i had the energy to cry i would; she's going to try hard to talk to them monday morning. maybe i'll get someone to at least help me with the symptoms soon.
Hope you've been doing well. have you been feeling alright?
have a wonderful weekend!
Darn, should have gone to med school when I had the chance! Actually, without having seen you/test results, there seemed to be three possible causes: 1) an L/L problem; 2) and AI problem or 3) a metabolic issue. You are, obviously, a "zebra". (MDs in training are taught to look for "horses" and not for "zebras", so if you are a "zebra" it can take a while for them to cotton on to it.
I hope you get your appt. asap. Get your RN/aunt to make your case sound really interesting: MDs love challenges/weird cases - they think they'll get something to "write up".
I'm doing ok, although I managed to get pneumonia. I had a 10-day course of anti-biotics and am better but still not back to where I was 3 weeks ago. In the meantime, I managed to change my insurance so I could go and have a consult at Memorial Sloan Kettering - which I did on Monday. I saw Dr, Tallman - the head of their leukemia service. He said (first thing out of his mouth) that I HAD responded to chemo last year - so of course I SHOULD have had consolidation chemo in the summer. So I'm now in relapse - but the one good thing is that my cytogenics haven't changed. I also had a bone marrow biopsy today (NOT fun!). I love my hematologist, but I shall probably be switching my care over to MSK. I see chemo in my very near future. It's not the chemo that worries/bothers me: it's the "incarceration" part. I wish someone could think of a way of doing it without forcing patients to have to breathe "canned" air. Wish I had some of Warren Buffett's $s, so I could build a better hospital....
Let us know what happens/when you are going to have your appt.
UPDATE and question about feet: Anyone know what this is or seen it before???
I'm still waiting for answers. Onc won't cut me loose. Had a couple auto-immune tests come back positive but waiting on a big batch of new test results to come back. A couple drs suspect lupus but Rheum said he doesn't. Which takes me back to the original worry and the big L we're watching.
I'm happily on day five of feeling almost human. I still have the lumps in my neck and accessory node, still sweating, daily fevers, not knowing where I am or what's going on half the time. Newest symptoms are serious pain and pressure in my eyeballs, mostly the right one. Rheum referring me to opthom for that. Fingers too numb to type or right for days at a time. And the bottoms of my feet are turning deep purple, black and gray. Anyone seen this before? I took pics today to show doc because when I asked him about it they looked normal (of course) and he pointed to his black slacks, saying this is the color we worry about... well I'm no dr but I'm pretty certain they will never reach solid black until I've been 6 feet under for a good length of time!
Icky color - flash makes it look much lighter in pic but you get the idea.
Normal foot an hour later for comparison (it's back to purple now though):
I have not followed the conversation and i don't know what made me pop in here today so i really don't know your history etc. but the pictures are very concerning. You really need to address this to the physician and its great that you took pictures to show him. My first thought was Raynauds syndrome and vasospasms but anytime you have discoloration like that ischemia and thrombosis (circulatory impairment) need to be ruled out. I wish you the best in getting to the bottom of this but please do take this up with your physician as soon as possible.
Hi! Thanks for your advice! The dark color change has only happened a few times and only the past week. I'm currently seeing a rheumatologist, an oncologist and the pcp. It concerns me, as well. I saw the best rheum in my city last week and mentioned it but he doesn't seem all that concerned. It wasn't that color at the time, though, and he said black -as in his black slacks black- was what they worry about. Now I have pics. I even got a little video on my phone as they were going from light to dark. I'm feeling there's a circulatory issue, too, because my fingers get so numb i can barely type properly some days and get super dizzy a lot. How would they test for that stuff? I've been having so many tests and dr visits over the past three months that I'm surprised I even have any blood left to give them! LOL
It COULD be a circulatory issue. There is an important artery on the dorsum of the foot - that's the top part to you. Put your foot at a right angle and palpate in the middle of the foot in front of the ankle. See if you can feel a pulsation. That's the dorsalis pedis artery. Another thing: when your foot turns dark: is it after walking around, after your feet have been down (eg after standing or sitting with your feet on the floor)? Does it improve after you've elevated your feet? Even in the "normal color" photo, parts of your feet look very reddened, and in the dark-colored one, I notice that a lot of the veins look more prominent. As far as your hands go: are they cold at the same time that they are numb? Of course there could also be a nerve impingement from the nodes in your cervical spine.... I'm just guessing wildly here. I'd certainly show the photos to the MD. The color differential is not insignificant, and if, as you say, they were taken only an hour apart and the color keeps changing, that's clearly something that SOME MD should be looking at. Just stabbing in the dark here.
I hope someone will get some real answers for you SOON.
Hey, Dr Karen! I'm hoping so too! The "good" picture is how they've always looked. The rheum checked my pulse in both ankles the other day so I'm assuming that part's all good. They do it standing and/or sitting. I wouldn't have noticed because I've ALWYS had my toenails painted and only recently have been going clear on them. Otherwise I'd probably never have noticed. Noticed they were purplish and cold like my fingers get. Hands get icy too. Wouldn't have noticed the fingernails but been too tired to care about getting a manicure so just let the acrylics go 3-4 weeks ago. The rheum mentioned rynaud's but said my fingers aren't dark so he doesn't think it's that. It helps when i stay bundled up and put thick socks on ;0
Just got some new lab results in the mail yesterday, (inflammation) sedimentation rate, kidney screen, and muscle injury screen (creatinine, eGFR, creatine kinase). All normal and said they have several other studies pending.
hope you're doing well!!
LOL. You are the "mystery lady". I'm just throwing out ideas and have no idea if any of them are applicable. Raynaud's is caused by vasospasms so it can come and go BUT it's usually brought on by exposure to cold. My "almost sister" (we've known each other since 4th grade) has it and has a whole routine she has to follow in cold weather., but if she's in a warm environment, she's OK. I'm glad you have that relative who's a nurse. I'm sure she's got some ideas. I wish I WERE a doctor, then I'd have better ideas about how to cure myself! The only MD that I know of who does sometimes look at this site goes by the moniker "Oncologist Husband" - his wife was diagnosed with AML, but she had "favorable cytogenics" and has now completed her treatment. He's not a hematologist: he's a breast cancer specialist, but obviously knows a lot more than the rest of us and has taken a special interest in blood cancers because of former training and because of his wife.
Just for the sake of getting a better picture of how your feet and hands really look on a day-to-day basis, I'd get rid of the acrylics. Also, given a possibility of an immune disorder, acrylics are known irritants. Just a suggestion.
Morning, Karen... new layers to the mystery for you! ha ha
Oncologist still won't release me so I'm still here (hoping if even if it's not relating to anything else on here, someone might get ideas from my weird little journey).
So my rheumatologist did new labs from scratch. He said "my ANA is significant for lupus." But I don't have any inflammation showing up and no joint issues/RA.
Complement C4 normal
Complement C4 normal
C1 inhibitor normal
ANA Dual Pattern (supposedly that's rare, you're supposed to have one or the other)
Homogenous 1:40 (Low level)
Speckled 1:160 (Elevated level)
Still have low red, white, hemocratic, hemoglobin, etc.
My question is, since the onc is still waiting/watching (I'm keeping L&L in the back of my mind til he lets me go) - has anyone in hind site had similar ANA results prior to (or along with) an L&L diagnosis? I still have the daily fevers, night sweats (some worse than others), extreme fatigue, etc. I've put 5 or 6 lbs back on during the prednisone. I also wonder if low dose prednisone (10-20mg) up until 2 days before the a-i bloodwork can effect the inflammation results?