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  2. The big question is, "Does it matter?" What are you hoping to gain with/without having an abnormality? What are the consequences of treating it? What are the consequences of ignoring it? Even if you manage to get an official diagnosis of something, are you any further ahead? Trust me, the number of disappointing Dr appointments way outnumbers the positive ones for me. My body was trashed 20+ years ago due to severe anorexia. Nothing about it really works right. Diagnoses and labels can be helpful, but they can also get in the way. I stopped worrying about them many years ago. Validation is nice, but I only bother with it when it's going to pose a threat to my health. Case in point: Last week with an oral surgery consult. Bradycardia & hypotension are on the typed, multi-page medical history sheet I hand over to every new Dr I see. I'm already apprehensive of doing surgery, have a long history of bad experiences with doctors, have a past history of abuse (and saw a dental chair with restraints on it as they sat me in the consult exam room).. you bet my BP and pulse were through the roof. The nurse wasn't buying the bradycardia & hypotension until I show her my BP reading from that morning -- 83/39, p45. Yep, that took general anesthesia & sedation right off the table. Otherwise, I would have just brushed her off. I pass out (among other issues). No big deal. It happens. It's part of "normal" life for me. It's not too different from someone who has epilepsy, or someone who is an amputee. To the world, their bodies aren't "normal", but that doesn't change their situation. They've been dealt the cards they have. It's up to them to make the most of it. Sometimes problems are easily fixable. Sometimes the treatments put you in worse shape and can cause permanent damage to your body. Sometimes doing nothing really is the best approach.
  3. Those EKG's are really finicky sometimes. I had a whole bunch of them saying "meets the voltage diagnostic criteria for left ventricular hypertrophy" and when they did the echo of my heart, it turns out I have right ventricular hypertrophy. It was not showing up in the EKG properly. I'd say, it's much better to have no heart issue than to have one. I'd take that as a win.
  4. Today
  5. For me it hasn't been as important as to what I'm drinking as much as that I keep drinking regularly. I can handle a soda or sugary drink, but only one at a time. Instead, I normally (try) to go for tea or water. What has been helpful are the Ozark Trail tumblers (knock-off Yeti) I picked up at Walmart. I'm much happier drinking ice cold water and these will keep it cold with ice for 24+ hours. With one of those full and nearby, I'm constantly reaching for it and drinking water. One luxury I do enjoy is squeezing my own orange juice. There's no comparison between real orange juice and the artificially perfumed junk they sell in the stores. Not even close. Not even the same color, taste, or smell. At least where I'm at, it's also cheaper to make the real thing too.
  6. Peace brother, just wondering how you're holding up.
  7. It's one of those things that we encounter with doctors. If it doesn't show up on standard tests, it doesn't exist or it doesn't show up consistently or its rare, so it doesn't matter. The best for me was a neuro-ophthalmologist at Mayo that told me I have 4th cranial nerve palsy. I asked why, as I've never had eye problems, especially double vision. She was like, you've had it for awhile, but for some reason you've decompensated. Why? No answers. So she sends the report to my regular eye doctor who tells me if it stabilizes get prism glasses otherwise I'll see you in a year. Whiskey Tango Foxtrot? On one level, he doesn't think it's serious enough to do more. On another level, do you trust his judgement? I am a little self-centered about health issues in that I know what normal should be and when I am told abnormal is ok or we can't find anything, I don't accept it either. The choices are to shut up and accept their diagnosis/decree, challenge them or move on to someone that will listen and look further. I am finding it difficult to be an effective advocate for myself as whatever I am doing, it's not reaching the right synapses in doctors. It seems like they don't like the patient having ideas of what's wrong with them, they want to diagnose it themselves. Then again, William Osler, the father of modern medicine said that if a doctor listens to a patient, he'll get the diagnosis. Something that's not taught anymore or isn't taken to heart.
  8. Interesting point. I had a follow up with a vascular doctor today and I told him my woes. He said maybe I need to stop taking one of my BP meds. I've lost 170lbs and I've cut down on my meds a lot, but it's possible one is causing some issues, not all. Maybe aggravating it.
  9. I’m not sure about the rashes, but the burning could be part of the neuropathy. GBS is usually pretty sudden, but some of the others can come and go in the beginning. I think it’s because the nerves demyelinate, which causes symptoms, then they remyelinate and the symptoms temporarily go away. If you responded to ivig it may be a diagnostic clue to help rule in or out some diagnoses. I understand though if it comes and go, you can’t really be sure if it was ivig that helped or not. A neuromuscular neurologist can do nerve conduction tests to see if it’s large fiber damage and which nerve is affected. Small fiber damage doesn’t show on those tests so you may have to do a biopsy. If it is a neuropathy variant, I would try to get tested sooner rather than later to help prevent further nerve damage. Good luck.
  10. Yesterday
  11. The machine sometimes picks it up. The machine didn't pick it up today, but doc did.
  12. @RecipeForDisaster - if you used to be hypertensive and now are hypotensive - is it your meds causing that? And if so - could they be adjusted? What brought on the change in your BP to swing from one extreme to the other?
  13. @potsiebarbie - yes, I have an abnormal EKG - it shows inverted T-wave. This CAN be serious if it is a new finding but in my case it is always there, so it is no big deal. The abnormality you are mentioning - incomplete right bundle branch block - was that what the doctor told you or was it the interpretation from the EKG machine ( on the print out )? Often the print-out interpretation is incorrect. I already had EKG's that claimed I had an inferior MI ( heart attack ) but the actual wave-forms did not support that. So - if your cardiologist is not concerned I would not be either. And yes - if you have no serious abnormalities or complications a one year follow-up is pretty standard. I have a rare heart condition and see my cardiologist every 6 months. But my husband - who has a minor arrhythmia - sees him only once a year. Sounds standard practice to me. But if you are concerned you can always go for a second opinion.
  14. Yes - I get it now, thank you. I was confused by the reference to the shingles shot. I hope you will improve with your symptoms.
  15. Do you remember why they ordered an EMG? Was it due to specific symptoms you had/have or just simply covering their bases to rule things out? I’ve never had any autoimmune testing done. Might be worth a look...
  16. I followed up with my new cardiologist whom I've only see once before since my new EKG abnormality. He said the echo and 24 hr holter were "fine". He gave no details and I asked about my newly acquired EKG abnormality and he said he could barely read it on the EKG and it's not a big deal and to follow up in a year. The EKG abnormality is a incomplete right bundle branch block, by the way. And as far as I can tell it seems to come and go, or not get picked up. I guess I'm just having a hard time accepting it. I left the appt thinking to myself "no, I don't want it. No thanks. I do not accept" lol I'm like a kid who doesnt want to eat their veggies. IDK. Any advice, or experience to share? Anyone else go that long in between cardio visits? Anyone else with abnormal ekgs?
  17. @Pistolshe’s talking about the peripheral nerves that are being attacked by the autoantibodies. In my case the a-1 adregenic autoantibodies are attacking the nerves that tell your peripheral blood vessels to constrict on being upright. At least that’s what I think it is. Nothing to do with the shingles shot, sorry to be unclear. When we discussed the blood pooling I said I think that it’s not going up my legs as far, we’re talking centimeters here, and she said it makes sense because the nerves demylate from the toes up the legs so if the nerves are re-growing they go the opposite way, from the central to peripheral and reach the toes last. Nerves regrow extremely slowly though. Is that clear as mud?
  18. We are all so different. I go into the low 70s systolic but I lose my vision when I get up or move quickly even if I can get my systolic up to 100 or so. I used to be hypertensive even on 3 meds to bring my BP DOWN... so I'm used to a higher BP. I can feel almost the same amount of crappy at any BP, but of course I'm usually doing my worst at the lowest. I do all kinds of exercise-anything I can tolerate, and I try to vary it. I don't give up when i probably should... I kind of forgot that hot weather was coming let's see how low I can get my BP-I'm sure I'll be enjoying many IVs when it gets super hot.
  19. I haven't seen a neuromuscular neurologist but I am definitely going to make an appointment with one. I was given 5 days worth of IVIG in the hospital and about 2 days after the treatment was done, my symptoms reversed. But for the last two times that the paralysis occurred, I did not go to the hospital and the symptoms reversed after about a week to two weeks so I am not sure if the IVIG would speed up the reversal or not. As for this episode ( which started Saturday) I am having a lot more pain and I have been getting rashes and burning sensations all over my left side so bennadryl has become my best friend.
  20. @RecipeForDisaster I too rarely feel the need to drink, except for first thing in the morning ( I am up peeing all night ). When I used to drink 2-3 liters a day along with lots of salt I just peed it all out, it never did anything to my POTS symptoms. In addition the fluid would add to my stomach problems and make me feel very full all the time. IV fluids are definitely the way to go in my case as well. The results are IMMEDIATE and LASTING!!!! With drinking fluids my BP was till high - with IV fluids my BP is normal to low and I can manage ( and feel ) a lot better.
  21. Hi @p8d - - that is what goes on with me also. Church, Dr appointments, PT .. even dinner with neighbors is a major stressor and requires planning, energy conservation and then recovery afterwards. But since IV fluids I gladly take it b/c it is no longer accompanied by syncope or seizures!!! I am not sure what you - or your neurologist - means by the nerves need to grow back. Does the shingles shot kill the nerves? I thought it prevents the virus from attacking the nerves?
  22. Regarding BP - I have both, high AND low BP. The funny thing is that when I run low ( 80/45 ) I am fit as a fiddle. If I go above 130/80 I am getting unwell and anything over 150's/ 90's causes me to seize or pass out. My sister on the other hand ( she also has POTS ) feels bad once she drops below 150/80!!! She can easily go as high as 220/110 ( symptomatic ) whereas I would have long checked out before I got that high. So - go figure! I guess BP is an individual reading rather an across-the-board number. ( Oh - I can feel the blood of cardiologists starting to boil! This would not go along with many of their theories/ training )!!!
  23. @bombsh3llmy Anti a 1- adrenergic Antibodies test came up positive, everything else was negative but with my UCTD diagnosis as well my insurance company approved SCIG. I opted for SC rather than IVIG because of a history of migraine and after 5 months I am seeing some slight improvement in fatigue/pain/brainfog/malaise and I think some blood pooling. Nothing dramatic at all but every little bit helps. It’s not helping BP/HR yet and I still have days that are terrible, especially if I overdo it (for me that’s Dr/PT appointments). It took five weeks to hit the loading dose so the first real impact only started in January. I flared badly after the second shingles shot a few weeks ago. My neurologist said it will take years for the nerves to grow back because they grow so slowly but we are giving them the chance now.
  24. I finally got the exercise pedals. But, I keep on wondering if it was the right choice, because I can exercise while standing. While the constant lightheadedness is worse while standing, I feel like I'm being lazy, and not pushing my limits, if I don't stand up and exercise. But, then again, summer is going to be a pain. Not able to go outside because it's going to stay 85+ degrees, and possible "pop-up" storms. I get the same sensation while exercising. I haven't passed out before, but many times felt like I was going to. I have persistently low BP also. Mine don't get down too low, though. But, again, with summertime, it'll probably go down to 70/40's.
  25. The appointments with GP's are supposed to be 10, with cardiologists 30 minutes, but anyone who uses the NHS will tell you this is wildly unrealistic. Doctors in and out, Cardiologists 5, 10 minutes or so if you're lucky. Ok. Just been staying off the internet as best as I can as it just seems to wind me up more than anything.
  26. Ditto for me, I absolutely never have any thirst, so forcing all that intake is a big chore... and sometimes I choke on water too. I find it bothersome to track my water intake.-I have enough to keep tabs on. I also don't have much positive effect even from drinking multiple liters of salty water in a day. No matter how much liquid and salt I take in, there's very little effect. If I run IV saline, I have a lot of improvement. It makes no sense, but it's the way I am. I SO wish someone would do research into the lack of urge to drink and link it to dysautonomia or something.... my mother, sister, and grandmother all share the lack of thirst.
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