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RecipeForDisaster

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  1. Yes, I feel awful after eating even a small amount. It makes me dread eating. Not much helps, other than IV fluids, which make me want to eat.
  2. Having diagnoses is very nice, although I am still missing a lot of explanations for what is wrong with me. And, HYCH isn't even known by most doctors, and the diagnoses I have would not be considered a big deal by most people. Yet I’m in really bad shape overall. I completely agree that for the most part, there is not really a lot to see, and we could be seen via telemedicine for most visits. It stinks to spend half a day traveling to Boston (with help) for no good reason Yes, they are the inflation cuffs that go all the way up your legs. They improve my circulation and BP. I have put together ear clips and a TENS device for my tVNS. I haven’t been using it, but I should. It was an hour per night. I stopped because I was not sure I was getting much benefit, but it definitely wasn’t hurting anything.
  3. I can’t have a PICC or port, either. I get a new IV every time, although I can usually keep it for 3-4 days. It stinks, but I’m glad I can do it myself at home.
  4. I heard that Dr Blair Grubb may be doing televisits again. I’d try for that for sure. My neuromuscular specialist at home orders my IVIG, because it’s technically for autoimmune SFN, which he diagnosed. I do like that I don’t have to reach him in Boston. It would be so great if everyone could see Dr Novak easily - he really is a pioneer. Even getting a weird diagnosis of HYCH was something other than repeatedly being told I don’t have POTS: I knew! Don’t give up - there are so many options out there! I have a whole room of devices like sequential compression, transdermal vagal stimulation, lots of compression gear… plus a giant box of meds, some for every day, and some to bail me out at bad times.
  5. My bet is you had less effects from IV fluids because they ran too fast(ant a normal rate like over 3-4 hours )and/or you didn’t get enough. I need 2 liters run very slowly. I have it at 80mL per hour right now.
  6. I don’t feel perfect when I lay down, either. I feel awful when I’m trying to sleep, and when I have eaten, and sometimes I don’t get better when I lay down during a crash. I can still have BPs in the low 70s while flat.
  7. Nope, he has theories and has diagnosed me with HYCH, but it hasn’t changed my management. He isn’t the one who ordered IVIG nor IV fluids. He has tried plenty of other meds - some of which have been helpful. I still have hope that he will figure me out. He does a battery of autonomic testing, including SFN biopsies, QSART, TTT, and cranial Doppler, plus Washington University lab panels.
  8. I see Dr. Novak. He doesn’t see patients remotely outside Massachusetts - and very rarely even then. I also think he said he was not taking new patients. He diagnoses this with cerebral Doppler.
  9. That is the type of specialist I see for my IVIG. He’s pretty good. He doesn’t really manage my hypotension, but I have so many other doctors. If I just had him, he probably would.
  10. That is so great! I hope many others get to try it. It didn’t help me, but that was about 8 years ago. I tried all different dosages.
  11. I’m glad I am not doing further damage to my nerves. But this one was not in my top 10 problems, and the IVIG isn’t fun. I don’t feel like I have a choice, though. I’m too young to have this kind of progressive nerve damage.
  12. Positive ANAs in 2 different ways wasn’t enough for me to qualify for IVIG. My autonomic issues and HYCH didn’t help, either. I had to have a positive SFN biopsy, and I think my abnormal FGFR3 result also helped. I was never offered any kind of DMARD or other biologic, but then I could not find a reasonably helpful rheumatologist, either. It took years to get started, and it’s expensive and not enjoyable, but at least it’s helping my neuropathy.
  13. I haven’t used it in a while, but I need to try again because there are good studies. The big city neurologist said I’m too sick for it to help me at this point. any TENS machine will work. Here are the earclips. https://www.tenspros.com/black-ear-clip-electrodes-EAE01.html?gad_source=1&gclid=Cj0KCQiA1rSsBhDHARIsANB4EJb-x0IbovkQ1B5VDCEI8Si8Xv3Z_P9Rtd60OD91a5ut6hisAtE_TxYaAsVCEALw_wcB
  14. I don’t have POTS, and am on 2 different beta blockers (day vs. night), so my HR is rarely that out of whack. I’m glad they aren’t using that for a metric - I once routinely got to a HR of 180 walking, but not now that I’m stabilized on meds. I’m 43, and I don’t have much weight cushion, either. I was really thin until I had to start meds for trigeminal neuralgia, which put 20lbs back on me, and I’m almost a good weight again. I’ve been sick for about 15-20 years, but had some of this all my life - I just thought it was how everyone felt, and believed that everyone passed out sometimes.
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