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Everything posted by RecipeForDisaster

  1. 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
  2. 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!
  3. 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...
  4. 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.
  5. 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!
  6. 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
  7. 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!
  8. 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.
  9. 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 te
  10. 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).
  11. 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.
  12. 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.
  13. 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,
  14. 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
  15. I'm really hesitant to look like a demanding or neurotic patient after my 30 day monitor and stress test several years ago ("my heart is fine"). It's a tough balance... I see a cardiologist next month, and I am still around, so it can probably wait.
  16. Right, I'm taking about temporary lowering of the head, like I did last week when I passed out. This time I actually still lost consciousness, but it would usually help.
  17. I wonder if you could prevent clots somewhat with aspirin or clopidogrel. I'm allergic to aspirin and NSAIDs which doesn't help.bFor me, I have increased risk, so I can't even consider permanent access. Also, for me, I don't see fluids as a bridge... I'm already quite fit and force myself to stay upright and active, even though I'm really not doing well enough for those. I use fluids for rescue but I suppose I'd use them before a big event or something. @pistol my infusion company was recently bought by option care. My company is good... it's just my insurance that's dictating the
  18. Hmm interesting idea. It's raised about 6". It did happen before, though. I don't find it uncomfortable, at least. However, I don't usually get hot when presyncopal. Somehow the waking thing feels different than my usual stuff. Does anyone else feel multiple distinct types of nausea? I have tried to sleep with my legs elevated but my back hurt a lot. That was an idea from one of my doctors. I guess one could switch their head to the foot end to kind of lower the head below the heart.
  19. I have the head of my bed elevated on stands, because it's supposed to help your kidneys retain fluid better. I'm doing so badly, I don't know if it has helped or not. I usually wake up blazing hot, nauseous, and tachycardic at about 2-3am. I despise it.... it makes it so hard to fall back asleep.
  20. Here we have those valved ends to add onto any kind of catheter. They are never open to air. I believe that any kind of catheter or port can use a pump, gravity/dial a flow, any administration method. I've never heard of the type of access restricting how infusions are delivered (infusion pharmacy is my career-I'm also a patient, at a different company for privacy ). Maybe they'd let you access your own port because you're a physician. Once in a while, we see people who do that, if they sign a waiver. I don't think people are so leery of liability there, though, right? T
  21. I suppose I'm not strictly resting for 5 minutes because I pump with the other hand a minute before deflating. The actual deflation doesn't require anything on my cuff, it's just a loosened screw and I let it deflate at the same rate, I don't speed it up or slow it down. So, I don't move at all while I'm taking the reading, just listening. I'm guessing and - hoping - that my BP isn't artificially high from this activity, when I am getting readings I need the low 70s!
  22. Most people don't get systemic anticoagulant, just daily heparin in the line itself (not enough to reach the bloodstream, really, it just fills the catheter). In a port it'd be a monthly heparin flush. Longer term usually equals a port. PICCS can last but not usually as long. They can migrate, get pulled out, clot off... there are drugs to de-clot if it's just the catheter blocked, but they are very expensive.
  23. I meant I don't fit the demographic for sleep apnea I actually don't have POTS... we don't know what, but it isn't POTS.
  24. I take my own BP manually too. It works well and is very accurate compared to a nurse's readings. The pressure from the cuff holds the stethoscope in place and I don't need to move that arm, it rests on a counter or table. I have almost never had an accurate reading from an automatic BP machine. I find they always read high on me. I had an excellent one and gave it away... the manual readings are the only way to go for my body.
  25. Yes, this is true. Patients with ports can hook themselves up when the Huber needle is left in. It can stay in for a week before it needs to be changed. Otherwise, if no needle is in, a nurse needs to come and access the patient. Ports need to be flushed monthly if not in use, and other types of access like Groshongs, PICCs (probably the most common, hangs out of the arm), and Hickmans need to be flushed daily. You can swim with a port if not accessed but not with the others. But, you can connect your own infusion with everything but a port.
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