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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. P

    Severe brain symptoms and still declining

    thanks Stridor. Im willing to trying anything what does CBD stand for?
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    Severe brain symptoms and still declining

    @Aerose91, @Martial, etc. I just stumbled onto this. I have had three years of unexplained symptoms that over a dozen neuros are calling "unspecified neuroinflammation/autoimmune response" after finding oligoclonal bands in my spinal fluid. Those are bands that indicate the central nervous...
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    Paraneoplastic redux- calling anciendaze and gingerrgirl

    Thank you to all of you! I really wish you better health days, too. I will post with any updates.
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    Paraneoplastic redux- calling anciendaze and gingerrgirl

    Hi everyone, @Justin30, @Gingergrrl, thank you so much for thinking about me. I did reply to a convo with Ginger yesterday. I switched doctors and went to see a neuro in NYC who came highly recommended as being a great diagnostician with over 30 yrs experience at a major teaching university...
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    What does this test result mean?

    @PhoenixBurger Interesting thread- curious phoenixb and I have a similar profile. I have some sort of unspecified autoimmunity and had a lumbar puncture which showed oligoclonal bands in my csf - yet I don't have MS. I understand that is indicative of immune/inflammatory issue in the central...
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    Paraneoplastic redux- calling anciendaze and gingerrgirl

    Oh and @Justin30, I do not think I have POTS. I did a Tilt and was fine. However, I definitely have some sympathetic nervous system dysfunction for sure.
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    Paraneoplastic redux- calling anciendaze and gingerrgirl

    OH and I did have an abdominal, pelvic and CT scan of the chest just to check for anything else besides the cyst and they found nothing. Which is guess is good or bad depending on how you look at it :)) Would be great to catch something super tiny super early and be done with this nonsense...
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    Paraneoplastic redux- calling anciendaze and gingerrgirl

    Well from the MRI it is clearly not an endometrioma and does not appear to be dermoid teratoma (darn) but she says sometimes they are microscopic and too small to be seen. My MRI was equivocal on malignancy - said it could not be "ruled out." Unfortunately, ovarian cancer could also cause...
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    Paraneoplastic redux- calling anciendaze and gingerrgirl

    Oh and the surgeon did say she has seen it a few times in her career where the cyst can have NMDA receptor and have been the cause of all the neuro chaos. My surgery is scheduled for June 9.
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    Paraneoplastic redux- calling anciendaze and gingerrgirl

    I went to Sloan and they primarily focused on the ovarian cyst. They were not sure what to make of the antibodies but were going to talk to their neurologist and get back to me. The surgeon was young and open to suggestions and didn't doubt for a second that something was going on. I also am...
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    Paraneoplastic redux- calling anciendaze and gingerrgirl

    Anciendaze! Thank you for responding. Honestly, my neuros keep saying "its negative" but I don't accept that with continuing neurological symptoms that are very much paraneo in nature (headaches, seizures, psychological issues, insomnia, movement disorders in the facial region, burning pains...
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    Paraneoplastic redux- calling anciendaze and gingerrgirl

    Ginger- I noticed that in the past month or so you have gone down this path. I am not certain of the outcome but looks like you are on IVIG after some positive autobody tests? Anciendaze you seemed to have some good knowledge about paraneoplastic I have had a complex neuro history. I was...
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    Autonomic testing anyone? Mine showed dysfunction - POTS, PPS

    No, I did not take any meds on the day of the test, but I kept bracing my legs, so maybe that was it. Yeah, I forget which thread I was in too, sorry, bc of the many theories I have about my illness this is not the only disease blog I belong to and I only visit it now and then. So I apologize...
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    Autonomic testing anyone? Mine showed dysfunction - POTS, PPS

    @Gingergrrl - Hello! First of all, I should update this thread if I havent' already that my tilt test was actually NEGATIVE so I don't know what to believe now. He actually said, "well sometimes you have POTS and sometimes you don't." What does THAT mean!!!!!!!! Ugh, anyway.... Funny, he...
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    Autonomic testing anyone? Mine showed dysfunction - POTS, PPS

    The autonomic neurologist not that much help! Par for the course..... Back to the land of the no answer! Good luck to all.
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    Autonomic testing anyone? Mine showed dysfunction - POTS, PPS

    No my apptmt with autonomic neuro is actually this week. Last month though I was evaluated by a movement disorder specialist. I am having lots of burning aching all over my body especially my ankles and calves and lots of cramping in weird places like my throat etc. The concern is a...
  17. P

    Blood brain barrier question

    Okay so this is a strange question, but would you be able to feel if its been breached? Meaning, every drug/medication I take I actually can feel my brain/head burn/tingle. That is one of my worst symptoms. Also, unfortunately, my MRI shows 4 microbleeds. Common in people over 65, but not...
  18. P

    Is this common? Low stress tolerance, crowds and noise overwhelm

    All very helpful. Yes, just diagnosed with POTs and something called PPS (my para sympathetic system should decrease during valsalva and standing, yet it increases). Its paradoxical. Dr. has me on Zyprexa which blessedly gets me to sleep. I was having 4, 5 episodes a night of waking up...
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    Is this common? Low stress tolerance, crowds and noise overwhelm

    Thanks Maria, you described it perfectly. Although mine is marked by a feeling of edginess and anxiety - partially because I keep self monitoring myself ("my brain feels wrong" "I must have some disease") and partially because I was diagnosed with autonomic dysfunction. They said I had a lot...
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    Autonomic testing anyone? Mine showed dysfunction - POTS, PPS

    Kanga- I checked. I did have the ACHR Ganglionic Neuronal Antibody test. Negative.
  21. P

    Is this common? Low stress tolerance, crowds and noise overwhelm

    My main cognitive symptoms are not memory ones. In this latest crash, I find it very hard to multi-task, feel stressed out by the littlest thing like which order to make my kids sandwiches in the morning. Today I was in a crowded grocery store and I almost left the cart. I had to ask a...
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    Onset associated with Exercise ?

    I am really starting to wonder. For a long time I've been denying ME/CFS b/c I have some autoimmune markers (low c4, c3; anticardiolipin, antithryoglobulin antibodies)- Ive been saying to myself, no there is a medically accepted disease there that dr's aren't finding. Now, years later, tests...
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    Autonomic testing anyone? Mine showed dysfunction - POTS, PPS

    I was tested for achetolcholine receptive binder as part of neoplastic panel- I wonder if this is the same thing. I will ask when I go for my apptmt in December. Thanks!
  24. P

    Autonomic testing anyone? Mine showed dysfunction - POTS, PPS

    I live in NJ It was done at JFK neuroscience medical center
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    Autonomic testing anyone? Mine showed dysfunction - POTS, PPS

    Thanks Leela- I had it done through my neurologist. He sent me to a local hosptal that did it. It only took 1.5. hours. But then after that he sort of dropped me - he was like Im a neuromuscular guy not an autonomic specialist. So I have an apptmt with an autonomic specialist - not until...
  26. P

    Autonomic testing anyone? Mine showed dysfunction - POTS, PPS

    Its a battery of tests sort of like the TTT. It measures blood pressure standing, deep breathing and valsalva breathing. Then you do the QSART which tests for sweating.
  27. P

    Autonomic testing anyone? Mine showed dysfunction - POTS, PPS

    Hi everyone. 47 yr old female - I have been in a long slow crash for the past two years with mainly neuro symptoms. Have reactivated EBV and Lyme in the past. I have super low c3 and c4 complements but so far no rheumy is diagnosing any autoimmune disease. I also have a history of...
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    Some words, anything please - crowds/overload, Autonomic ? Thryoid?

    DD. The situation got more complicated today, as I found out that I clinically have autonomic dysfunction. Got my report today. Basically I have POTS and something called paradoxical parasympathetic syndrome (when the sympathetic rises, my para should decrease, but it rises as well). So...
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    Some words, anything please - crowds/overload, Autonomic ? Thryoid?

    So here is where western medicine and homeopaths diverge. Western medicine telling me Oh 10% of normal people have that antibody - they tell me this despite the fact that I had this test a few years back and it was NORMAL then. So clearly its not normal for me now! I also was told JUST that...