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Lindz

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About Lindz

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  1. Ugh. I did not know it does not reverse the nerve damage already there. This cranial nerve stuff has got to go! Thanks for the link to the IG living website. L
  2. First of all can anyone tell why evreyone's post headings are vertical? My view of this board as gone wacko. Anyway.... Hello, everyone, my last post was January when MSA was on my short list. I am happy to say that I have been cleared of that! Other diagnoses have emerged..... My diagnosis - CIDP- be helpful to some of you with full body neuropathy type symptoms. As far as ANS, my issues are super low blood pressure (85/52) but no orthostatic hypotension. I have orthostatic intolerance and crazy sleep epidsodes (not breathing, paralysis) Some nauseau and vertigo when falling a
  3. Everyone thanks. Im on the east coast today enjoying a day with my family hunkered down with my family - in snowstorm Jonas. Sylvie, yes, you have talked me off the ledge before and I know you are going thru the diagnostic ringer as well. I appreciate it. Yes, I am seeing a movement disorder specialist. I was referred to a local clinic. I thought I was seeing the MSA guy, which I was excited about b/c he's supposed to be awesome, but found out Im seeing the Chief of the Movement Clinic. While he is not the "MSA guy", he is the chief and expert in Parkinsons and dystonia and with MSA
  4. Lewis. Thank you. Imagine my horror. 2.5 yrs of trying to find out whats wrong with me and to have this diagnosis as the last man standing. Ive been labeled psychosomatic, my family stopped believing in me, the money on testing, etc. Its horrendous. Really, don't want to get on my soapbox, but I would KILL for a normal day of laundry, kids baths, etc without this hanging over my head. Yes, enjoy every day.
  5. Hi everyone, I posted here a few times in the past few months. I had autonomic symptoms start out of the blue about 2.5 years ago. None of them were debilitating. However, at the same time I developed a stiff neck and what I thought were cranial neuralgias. Now I know from a new neurologist taking a look at my case that what I was experiencing was actually dystonia. Dystonia is a stiff cramping or involuntary pulling. Originally in my neck, then in my throat and oral cavity. Its called oromandibular dystonia. I wasn't too worried until recently, when I developed urinary urgency. I kno
  6. Thanks. I guess not everyone is a straighforward case of adolsescent POTS! How do you all cope with the, "Well what if it turns into...." It think thats my biggest challenge is not exactly how I feel now but what if this is developing into MSA, or another bad disease. I feel like I keep acquiring new symptoms every day and then I keep reading how a lot of autonomic dysfunction can herald other diseases in the future by years. Im sorry, Im being a fear mongerer and don't want to worry anyone. I have to try and live in the moment. Thanks so much for your replies. I do try and exercise b
  7. Hi everyone, I had an ANSAR and no real explanation from my neuro for why all this neurological craziness is happening. Ive developed all sorts of neuralgias, now palpitations, obstructive sleep apnea and Im getting really scared that something sinister is behind this. I was having autonomic "seizures" two years ago (nausea, dizziness, arrythmias, rising sensation), but the EEGs never picked them up. I have not been the same since. I walk around foggy, with a burning headache, head pressure,burning eyes that I feel my eyebrows sometimes droop. Mine are not positional related. Its almost
  8. YES YES YES. I have all sorts of head and eye pressures. Sometimes like somone pressing me down on top of head too. All day long, sitting and upright. I also feel a tingly head sensation too. Esp. when I get really nervous or anxious. From what I undesrtand its just the nerves acting up. Its my scariest symptom. Always makes me rethink what exactly is going on. I also have been having problems with sensory overload in stores like I just want to shut down (I just tried Christmas shopping and got anxious) and also in long conversations I get weird head stuff like its too much. (Teach
  9. Head and eye pressures. My head also feels numb and tingly sometimes esp. when I am anxious.
  10. God is so very good. Small miracles and progress every day. )
  11. Hi everyone, I posted my test results yesterday, but think I might reach a larger audience for the specific issue I'm asking about so I'm reposting - My test results indicate normal breathing on Vasalva and Standing yet noted that paradoxically, my parasympathetic increases in response to a sympathetic stimulation. I think this is called PPS and has been posted here years back. Wondering if anyone more recently has it. One of my issues is palpable, crippling, skin crawling anxiety since this began 2.5 yrs ago that has not responded well to psychiatric drugs. Wondering if this PPS phenomen
  12. Wow, I thought this was only me. I keep saying that my brain hurts to think. I get pressure, pain and a tingly feeling and am very very anxious. I cannot understand why cognitive activities make me so anxious.
  13. 5 minutes standing. I don't think I have hyper b/c nothing about pressure raises.. Now that Im reading the report, I see he mentions "Paradoxical parasympathetic response." I saw a good explanation for it - basically the two systems should be balancing itself out. Problems happen when one becomes more dominant. In my case, when the too dominant sympathetic system raises levels, the parasympathetic, instead of decreasing raises right along with it. So the treatment, whatever that is, is to grab both systems and lower them together to balance the see saw. Thanks for responding. Can I as
  14. Oh it was not a tilt test. I was just sitting then standing with electrodes and blood pressure cuff. Tilt test in a month.
  15. Oh and I might add I am jumping out of my skin constantly. I keep thinking its my thyroid. (Which I also seem to have recently developed antibodies too as well!)
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