RecipeForDisaster

I haven't had an appetite since March no matter how long I go without eating. I'm trying to tempt myself and sometimes force myself to keep taking in calories. Sometimes the smell of something good like pizza or Chinese food will help me to be interested in food, even without hunger. I have a lot of nausea too but I can take zofran to help with that. I try to make myself take in ice cream, cheese, nuts, etc. as concentrated sources of nutrition and calories, and I supplement with homemade shakes, too. I'm a huge foodie, though, so it's weird and disappointing to not want to eat. I usually feel worse after eating, even if it isn't much.

I've lost 13 lbs and was thin to begin with... the doctors I've seen recently aren't concerned but everyone else is! I've never been this light as an adult. I think it's just secondary to my low BP and not doing well. My body doesn't seem to want the burden of digestion on top of fighting to keep sort of functioning!

I don't even have anxiety or a label thereof, but I swear I could go in with a spear through my head, or a burst appendix, and would be told "it's perfectly normal ", "you just have to adjust to life this way", and "it won't last forever". I lost 13 lbs unintentionally, down to the lowest weight I've ever been, and was told "it would be normal for you to be depressed ". Oh, that's the MOST likely reason, huh? Not because I feel too sick to eat and worse after? Btw, if I were depressed I'd eat everything in sight, that's more my style.

How does one get doctors who actually CARE? No diagnosis here either, just annoying stuff like "idiopathic hypotension", "positional dizziness"...

Yep, I can be flushed and have an increased white count and tachycardia , but they won't consider that a fever.

Absolutely. My temp is 97.2 or even lower at baseline, and I feel extremely feverish and flushed at 99. But it's always dismissed as "normal" when I'm sick. Then how is 97.2 normal?

I love the fact that I don't have a smartphone. I actually only have an emergency bar phone - it's for calling for a tow truck or medical help only, I don't use it. I am free and disconnected...

My CMP is always fine, too... potassium and sodium actually on the low side despite supplementation. I'd love to at least get the first liter LR and the rest NS... not like I want to run 6L LR weekly or anything.

DDAVP isn't super common for this sort of thing... I know for me it was one of the last chance drugs, and most of my docs didn't want to prescribe it. No alternative was available - I can't ruin my veins nor can I always lug an IV pole around for 12 hours, and sometimes I'm too shocky to even get an IV.

I'm hoping to try LR, too, but I have enough trouble getting saline myself. The doctor who writes my Rx for saline doesn't want to try LR for some reason and I'm grateful to have ANYthing, so....

I use DDAVP as a last ditch BP increaser because I am very low and not much helps it. I use it as little as possible and take 15gm salt daily. I haven't had my urine volume measured, but my sodium excretion was normal. I don't think I urinate more than I drink. I'm going to see a nephrologist next. Endocrinology was not interested. If not for saline and DDAVP, I'd be stuck on the floor at least one day a week these days.

Right, I'm in the cardiologist's office right now. Much better to see my own physicians and get testing ordered. Lots of doctors don't understand my clotting issues, let alone the other stuff. I can't believe the other doctors left me hanging all this time. I was at a major hospital on Thursday! My oxygen levels are fine but that doesn't rule anything else. I'm taking a ton of little shallow breaths, which must be keeping it up.

The X ray was just to rule out other stuff. I'm getting contrast with my angiography today. They didn't think to run a D dimer on Thursday with my other labs?!

I've been having awful pleuritic chest pain that radiates (can be worse than the original pain - neck, shoulder, arm)for ten days now. I do have clotting disorders... can only take 1/4 breath but it hurts to breathe out, too. One doctor totally ignored it (rheumatologist) and the other I saw ordered plain X rays and a few labs. They didn't show anything except that my sed rate is 15 points more than it ever has been. Those results don't rule out much of anything except pneumonia. The PA I saw was supposed to ask my PCP about other labs, and they never got back to me or checked in. The sed rate is only on the high end of the range now, not over. My heartbeat actually hurts! Leaning, yawning, etc. have made me literally cry... so painful. A few nights I didn't sleep for one minute. Tylenol hasn't helped, nor has heat, but I can't handle much BP wise. Lidocaine patches did nothing but TENs helped where I am allowed to put it on (not neck or chest which is the worst of it). I'm allergic to NSAIDs

The pain is bumping my BP up, and haven't seen it below 80 systolic- yay?

I was supposed to see one of my cardiologists today anyway... my hematologist ordered a CT/pulmonary angiography after that is over. I'm a bit afraid of the contrast and really hope they'll let me use the IV for my own fluids after. I can't eat or drink for 4 hours prior anyway.

I'm praying I won't have to be admitted for whatever this is. I'm afraid of getting substandard care... because I have been as an outpatient, completely falling through the cracks. I've done Lovenox shots before... I also hope I don't need lifelong anticoagulation when I am constantly falling and getting hurt! I'm covered in big bruises even though it takes a lot for me to bruise. I would really appreciate your thoughts being with me today! I was already so sick before this. I sure hope they don't expect me to live with this discomfort even if it's not something bad - it's torture!

I really want to avoid joining even for that long, unfortunately.

I am totally amazed that about 12 physicians I see in 3 states don't have a single -recommended- rheumatologist. It makes me think that we might not have any decent ones.... wouldn't one of them know one??

Federal Blue Cross. The problem isn't my insurance but getting the PCP to send referrals out. They have done so literally about 12 times now, in a few years, and the specialists always require that. 

Plus, I've asked each doctor and all of my friends and family, and absolutely no one can recommend a rheumatologist!! There must be a lot of bad ones ... I keep hearing "I know some but none I would refer you to". If I heard of one that was promising, I'd bug my PCP, but I'm not going to take another shot in the dark. It stinks!!

I'm not on Facebook. I found my doctors didn't even want to send me to a rheumatologist to begin with, so I don't think I have a shot at seeing another one anyway. It's ridiculous. I mean, my ANA turned positive not too long ago and has stayed there... I had new (4 days) chest wall pain when I saw him and he wasn't interested at all. My sed rate, while still within normal range, is the highest it's ever been. I can see if my hematologist will test me for that gene. I'm very let down about all of this. Not that I want AI, but it seems I do have it, and I can't get anyone to care or look into it. Now I have this awful chest (front left) pain that limits me to 1/4 breath, going on a week, and no one seems very worried about it. I got X rays but not the expiratory films you need to rule out free air, and some labs... that's it. 

He wouldn't really even talk to me about anything.  I don't know what his views are. I could have something like AS and then I wouldn't even need a seronegative diagnosis. I don't know if I have enough signs of anything autoimmune, but he did not touch me except to listen to my lungs in two whopping places. I doubt I'll be able to be referred to another one. I really hoped for someone who would actually assist me!

Unfortunately, this was a total and complete letdown and waste of time. The doctor was uninterested and said this was a dead end as I don't have Lupus or RA (DUH thanks). The trip in total took over 7 hours, I waited months to get the appt and spent all those months preparing... sending labs, writing up a summary, etc. He spent maybe 5 minutes with me and got interrupted twice by his pager or phone, and once by someone WALKING INTO THE ROOM to interrupt me in the middle of a sentence (they wanted to know where the doctor was, what??)! I want my copay back!!

I do wonder about AS... but I will not be getting any help from this guy!

Believe me, I'll be mentioning it, it's quite painful and distracting! I don't want AS but if something helps him diagnose me, I'll take it.

My ESR and CRP are normal too. I'm going in with an open mind and will bring any recommendations back to another one of my many doctors. I kind of had a hunch he might know dysautonomia because patients with AI diseases do get it.

Of course lately I have severe rib pain that is restricting my breathing both in and out... I hate having something additional going on to muddy the waters, but the rheumatologist may be interested in it. Thanks!

Phew. Thanks guys. I guess I'm bringing the IV kit on public transportation in case they draw all that blood! I really don't want to be on the floor of a subway car.

I do have mouth and nose sores.... usually achy in many places, but part of that is frequently falling and getting hurt. Malaise, absolutely. I used to have my ANA measured often and it never came up positive until about a year ago(consistently positive since then) . After a bit of a workup, and it "only" getting as high as 1:160, I was told not to worry about it. Then my Mayo test said I had immunofluorescence and to look for non-neurological autoimmunity. Suddenly I needed a stat rheumatologist referral. Sigh.

I'm very hesitant to use immunosuppressants.... I do so poorly when I get any infection at all. I will do so if I have a reason to, though! 

Even if they don't connect them, it seems like something else is wrong with me overall, so I'd really love them to find it. My expectations are pretty low, but I don't really know where else to turn for help with diagnosis and treatment (and I really don't love having autoimmunity going on unchecked). Thank you!

Thanks. It really seems autoimmune to me, especially since no one can seem to figure out WHAT it is.... and I have lots of unexplained other stuff too.

That's just what I was saying to a friend-I hope he's creative and determined. I can't imagine leaving another specialist's office with "not my problem" as a result! I didn't get much choice in this referral, so my fingers are crossed, but he's at a major, and good, hospital.

I'll be going to a rheumatologist for the first time... in addition to this impossible to classify hypotensive/syncopal/orthostatic/tachycardic illness that I have, I have a persistently positive homogenous ANA and confirmed immunofluorescence. I do kind of feel flu like most of the time and have a chronic sore throat, plus a bad neck, back, and shoulders. 

I'm not really sure what to expect. If they are going to draw a ton of blood (I sent them a boatload of labs, imaging, notes...) I'll need IV fluids, but I'd rather not bring them on public transportation. I have had negative tests for lupus and rheumatoid factor, so I don't even know what we're looking for. Any input would be welcome!

I haven't had luck getting switched over to LR, so I have to be grateful for my saline.

DDAVP does help me somewhat. It might be worth a try... I also take licorice with some benefit and no side effects (also recommended-after I put myself on it, the doctor we have spoken of said "good idea", ugh). I couldn't tolerate Florinef, but take tons of salt (broth is great, or I make homemade electrolyte solution).

I have a script for infusion 3x weekly too. I do 1500-2000mL of saline. Nothing helps as much as an infusion... but the effect is gone within two days. The only things that restrain my use are acting to keep my veins usable, and time to run the fluids slowly" good luck! So, I wouldn't say that I get permanent results, but it's vital to me.

Oh, a cold will knock me way down, and I'm the same, my autonomic crap flares before I have any idea I'm getting a cold. I'm talking about a little temporary  allergy issue, the tiniest little itchy thorat thing. That's just silly that that's enough to set us off.

I haven't been certain, but it has seemed like my usual seasonal allergies have set me off many times. It's like I'm in a big unexplained flare, but then I realize my throat is sore, I'm sneezing, etc. it's really annoying that something so minor can give us such issues,

Fluids normally help my chest discomfort a lot. If I could afford the oxygen I was prescribed , I thought it would be a good experiment to see if that helped the chest  discomfort, too.

I've had the same suspicious radiating pain with nausea, etc. I haven't had a cath but was cleared by cardiology for angina type issues, sigh. Of course things can change! 

These weeks of discomfort were different. The quality wasn't the same, the persistence was unusual... I think DDAVP may have helped, so my guess is that it was due to especially bad perfusion. I am always hesitant to look like a hypochondriac, which is dumb, I know.