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Everything posted by Raisin

  1. I have a follow up appt at Cleve Clinic coming up and I was planning on discussing this very thing with them re steroids and feeling better. I am assuming it may also be related to autoimmune. I will report back if they give any good info.
  2. I have muscles in my back that twitch fairly violently when i relax. I think this is a myoclonic thing? Interestingly, they started going crazy also when on the TTT. I keep wondering what is going on with that pathway?! Lol
  3. Sorry TCP if my high achiever comment was taken in a negative way. I meant it as a compliment. I had read that and being a past high achiever myself, I thought it was pretty cool. I took it to mean a trait due to a high achieving ability,...certainly not a possible psychological downfall. In my mind, it was just another fact to be explored in finding a cure. My apologies to anyone I may have ignorantly offended.
  4. Low blood volume here as documented by blood volume test. I believe 16 percent down. No renin/ etc. tests run ....I don't believe. Test result said possible anemia? It said low red blood cell volume. I don't know what that means exactly.
  5. I'm glad to hear your scan was negative. I will make sure an antibody test is done if this doc didn't cover that base. I am soooo grateful that we can all share our experiences and knowledge. Perhaps we will all stumble upon a common, fixable link. Rock on!
  6. P.S. did you know that POTS peeps are statistically very smart and high achievers? Thought I'd throw that in there. Lol
  7. Oh goodness. I feel for you sooooooo much. I experience this at times from my husband and his sister. Hubby said that if I did more for myself than perhaps people might have some compassion for me. (as if no one did). It wasn't until the doctors explained things to him that he began to turn around and even now...I have to be guarded as to what I share or do not share with him. I have a degree in Psychology and as you may have learned in your classes, there is something called "victim blaming" which occurs in our society. It is the mentality that when someone gets sick or is somehow struck with something bad in their life, they must have done something to cause it. By assigning blame, we are thereby consoling ourselves that that same thing won't happen to us if....(ie. I won't get cancer because I don't eat red meat.....she got cancer because she ate like crap). I also began to see that husbands (and parents) feel they are responsible to "fix" the problem and that their stress level is also very high when we are ill. It sounds like you recognize this in them and they are fallible beings just as we are. That being said, it is very important, I feel, to seek support. If they are Ill-equipped (and it definitely sounds like they are), then the support may come from a friend, a group (like here) and/or spiritual guidance. I know the feeling of isolation that can occur. Please hear that I understand and that we must keep stepping ahead. The answers will come and if we are lucky, then perhaps they will come around as well. Prayers.
  8. Thank you for answering E Soskis! I did look at my lab test order sheet and it says neosin neuro paraneo. ? I tried to google that (lol) but can't figure out if that is an antibody test plus a neoplastic test or exactly what it is. I am sure it is abbreviations but, as you said, when you get into the more rarer tests and diagnosis, the googling tends to dry up a bit more! I do go to the Cleveland Clinic and I am aware of a neurologist at the main campus that I may end up seeing if I don't feel my clinic satellite doc is willing to cover all bases. It was the results of my other autonomic tests and my thermoregulatory sweat test (anhydrosis of distal and hypohydrosis of central) that led them to recommend to my current Neuro doc to test for neoplastic and antibodies for ganglionopathy. Good news is that I already had the skin biopsy as they had a cancellation. I sure appreciate your knowledge of proceeding further. As for the shortness of breath, I told him I know when I am anxious and that the two do not go hand in hand. He seemed distracted and as if he wasn't really there this visit. I will give him another chance as I am extremely grateful for his knowledge and assistance up to this point but we have to fight to get all the bases covered so that we might feel better, huh. I do have lowered blood volume so your explanation makes complete sense. Also, I read that low blood volume can cause anxiety! Wow, huh?!
  9. I think you are on to something! Keep going! I hope you have a doc who can appreciate your train of thought and assist your persuit.
  10. Thanks Rachel. Yes, I think we are getting to the bottom of this. My frustration ,which I didn't really explain very well ,was that the neurologist said he was ordering the tests only because the autonomic doc thought he should and he seemed dismissive. In the past, he always seemed concerned and "on the same page" as me. I think I am actually getting more impatient as we get closer to a final diagnosis (or hope thereof). I have to Maintain my peace and chug along!
  11. Thanks andybonse! Well the appt. was kinda frustrating as my neurologist said he is ordering a skin biopsy and he ordered a blood test I think for paraneoplastic syndrome but he seemed to be mentioning anxiety alot today. For example...you get out of breath because you are anxious to be in a crowd, etc. I don't get anxious in a crowd and I don't get out of breath from anxiety so I felt dismissed. I thought he was on the same page as me re the Dysautonomia but now I am questioning this thought. Haruuuummmph.
  12. Hi everyone! I got the results of a thermoregulatory sweat test which says possible autonomic ganglionopathy. I see my neurologist tomorrow. I just wondered if anyone knows if all autonomic ganglionopathy is autoimmune in nature or does that encompass other things as well? I googled (lol) but only see autoimmune related responses. I am trying to appear somewhat educated so that I can ask the right questions for myself. Thanks! Boy, this can get rather complicated, can't it?!
  13. Hi! I was crying one day and wondering what was happening to me when all the doctors that I had seen had sent me home without answers or validation and I asked God what I was supposed to do and all I heard was "just live". It was out of an odd circumstance that later I ended up in a neurologist's office and he has been a great doctor, a validator and a team leader. I know now that in those desperate moments when I feel like a large pile of dog poo, I may not be able to do any more that just living but that is what I do. I wish you good thoughts and prayers and certainly, understanding.
  14. Thanks for the welcome srb! Yes, I do feel blessed to be in a city where all this testing is available. (Cleveland Clinic). I'm sure that this will iron itself out in the long run. Yes, the slow and slurred speech is very odd, isn't it? I know I am doing it but I can't stop doing it. I start actually analyzing it when it happens...as if from a third party observer! Lol I sure hope all of us the best.
  15. Oh thank you gjenson! I had no idea what they do for a nerve biopsy. Did they do yours in the office then? I have had the nausea since July of 2012 I believe. It was 5 days before a surgery to take out my appendix and I just thought perhaps I was nervous or that the appendix was causing the nausea. But, the nausea never went away! I, like so many others, went from one doc to another and test after test to no avail until i met a fabulous neurologist who has been a life saver! I did read that all this can be caused by an autoimmune disorder. I am assuming that the tests for that are just drawing a huge amount of blood?...looking for all the antibodies, etc.?
  16. I am so sorry you are feeling this way! I am new to this so I don't have any suggestions but I think I would call my doctor that is following my Dysautonomia right away. Even though your meds haven't changed, there may be a new side effect cropping up? God Bless.
  17. My neighbor said I just need to get in shape. When I said Dysautonomia is not a result of being out of shape, he rolled his eyes. I decided to walk away from that conversation because I wasn't going to win.
  18. Hi everyone! I have fairly recently been diagnosed with Pots and we (the docs and I) are searching further to see just what else may be going on as well. I have been run through the autonomic ringer of tests. Positive TTT with mild OH and EKG changes(30 day monitor since shows only PVC's and PAC's....no biggie) , normal Valsalva, 40% blood pooling in legs just upon sitting up (not even standing! Lol), 10% hypovolemia, and most recently I completed the TST whereby I stayed completely orange until my internal temp got up to 102 and then I had some purple patches on my belly and upper chest and forehead. My Dysautonomia doc had said that if I did not sweat enough in the TST, he would like me to have a nerve biopsy next. I tested negative for ED, Myasthenia Gravis and fine B-12. I have trouble with balance and use a cane and have really struggled with nausea and get out of breath sometimes. I also have had migraines my whole life and was recently hospitalized when I began slurring my words and my left leg stopped working which they said was probably a migraine related TIA (can't say I ever had a migraine like that before!) which lasted five days. I sometimes notice also now that my speech "slows down" but this seems to just go away on its own. I guess I am getting nervous because I wonder where I am heading, eh? Hubby for whatever reason doesn't seem to be able to be supportive or at least not in the way I feel I need at the moment. Has anyone else had a nerve biopsy? I don't know what that is like. I'm fairly sure they will also look for autoimmune causes maybe? Is that done with blood tests? I am trying to increase salt and fluids and I am taking Metropolol and Midodring which are somewhat helpful. Any help is appreciated! Thanks!
  19. Hello! I am also a newbie and have started Metropolol as well as Midodrine. I have noticed for myself that the low dose of Metropolol has helped me keep on moving but when we tried to increase it (doc and I thought since it was helping perhaps more would help even more) , I felt worse altogether. Very tired and quite nauseous....so back down we went!
  20. A few months ago, I went to the hospital after I felt extremely nauseous, slurring words and my left leg stopped working. No headache at the time but I have a history of migraines which used to consist of a major headache and then changed to occular migraines with out much of a headache at all. I was in the hospital for 5 days. MRI was clean but they said I had all of these symptoms caused by a migraine. I was skeptical because it took 5 days to get my leg to work correctly. My neurologist said later that the place in the brain where my migraine was located was right next to the area where my motor function was located and the blood vessels constricted so hard that it affected the motor area as well. Like a TIA caused by a migraine. No permanent damage done. I think it is prudent to definitely get things checked out when symptoms become so severe unless you have a longstanding documented history of this. It is scary. I have noticed in myself that if I know what is happening in my body that I am not as alarmed....if I don't, then I am scared. Always better to be safe than sorry.
  21. Hello...this is my first time posting. I am seeing Dr. Jaeger at CC and I have failed the TTT as well as QSart and have 40% blood pooling when I sit up as well as 10% blood volume loss. I am going Thursday for the TST with a possible nerve biopsy if I fail that test as well. He also mentioned that it may be caused by antibodies among other things as underlying causes. Sooooo.....I guess I can't say I have tested positive for the same things as you but I may in the near future! Ha! The CC has been great so far and a nurse named Chad was the sweetest and said, "You are safe here". What is better than that?! I wish you the best!
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