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Posts posted by sugartwin

  1. I have hypotension, but I didn't start out that way. Initially, my blood pressure went up along with my heart rate when I stood. As far as I can tell, the degree of orthstatic hypotension in AAG corresponds to the severity of the disease/autoantibody level. There was some trial I read about that only wanted people with drops of 30mmHg or more, whereas mine is just 10-15mmHg.

  2. Dr. Chelimsky was my old neurologist and I can't say how I wish this testing had been done on his watch. I know he would have a more satisfying explanation than the one I just got. If you haven't seen Dr. Chelimsky before he's absolutely wonderful. He listens. He's considerate. I wish they were all like him.

    Also, Jen, I think issie is onto something with the Driscoll theory. If you haven't read it yet, you definitely should. It reminds me of what your chiropractor is theorizing about; spinal fluid trapped and unable to drain. I don't know if that's the case for me or not. I have reversal of the cervical lordosis (I think it is really common in EDS) but mine is not very severe.

    I almost never get sick, so I think my neuro is right on the count that I don't have immune deficiency. I get sick even less often than most people. I had a cold last March and I didn't get sick at all the year before that. I just don't catch things at all. I think maybe it might lend support to the idea that my immune system is in "overdrive." Right after my cold I had a huge flare of symptoms.

    Thanks for the info, arizona girl! All the variants of CIDP I read about have some sort of motor involvement, which I don't have. I hope to find a neurologist through their forums and boards. The testing you mentioned...spinal taps and biopsies, I wonder if it could be helpful in determining a course of action.

    issie, if I can manage to get this treated successfully, it would be wonderful if it took some of the pain with it. I've lost so much muscle from being sick that the pain of my loose joints is really bad. It's a vicious circle. Muscle loss, pain, inactivity, muscle loss, pain, etc.

    I've felt really sick, scared and alone for the past few months. If nothing else, I finally know WHY this is happening to me.

  3. Hey arizona girl, I know I had igg drawn two years ago when I had my first round testing done and it was low normal, I think. I have to go through my huge binder o' records. Maybe I should have those done again. And I kept pressing him with the large fiber thing because I had just read the EMG report. He said my EMG was "perfectly normal." I said, "What about the loss of my reflexes?" He said, "some people with small fiber neuropathy lose their reflexes." Which is the exact opposite of everything I've read, which is deep tendon reflexes are present in small fiber neuropathy. It's bothering me. Reflexes are large fibers, which would technically make this a polyneuropathy, like you said. That's what it says on my report "suggestive of peripheral polyneuropathy."

    When I referred to my situation as an "autoimmune problem" he said "not a problem, an autoimmune response." What is that supposed to mean? It's not a problem? I felt like the whole appointment was a justification for his inaction, despite what the tests clearly showed.

    I'm really tired of all the the hospitalizations, the weight loss, the nausea, the pain, the exhaustion and the nights spent up in fear. And I'm tired of pleading to be taken seriously. Now that I have my hard data I'm taking it and running (to the nearest qualified neuro!) To Sue, yes, I am sick to death of lazy doctor like this one.

    Cynthia, thank you for the well wishes. I wish there were something better to do for not sweating besides just staying out of the heat! I've noticed that where I do sweat, I sweat twice as much. To make up, I guess.

    Rich, I really appreciate the video. I'm trying to make as many non-medical/lifestyle changes as I can to help myself through this.

  4. This is what my diagnosis was changed to after my autonomic testing earlier this week. I had long been feeling that I was getting worse, but had been brushed off for awhile, so I'm glad I got the opportunity to repeat my testing, starting with an EMG that was abnormal (loss of reflexes, causing ataxia and loss of proprioception) and autonomic testing with QSART, valsalva, tilt, etc.

    I just wasn't expecting such grim news. My neuro said that two years ago only my feet had stopped sweating according to the QSART, but now only my upper arm is sweating and only a little bit. He said if he does the testing again next year, I probably won't be sweating at all. I passed out during valsava (but I don't have the prinout of those results.) To my surprise, the only treatment is to "treat the symptoms" according to my neuro.

    I'm really considering a second opinion. I hear people talk about courses of IVIG and plasmaphersis after getting such diagnoses, and even though my doctor says he expects me to get worse (to stop sweating altogether!) I just have to let it happen? When I pressed for treatment he said since I had no known antibodies (seronegative) and I wasn't immune deficient there was nothing to do. It was awful. His bedside manner left much to be desired. When I asked when I should get concerned about the severity of my symptoms, he said I didn't have to be concerned, because it wasn't a large fiber neuropathy like Guillan Barre and wasn't fatal.

    Isn't there a class where doctors are taught not to say certain things?

  5. One thing I have found very useful during my current flare is tilting the bed head up a few inches (I did four.) It was on my neuro's list of helpful tips and tricks and at first I wasn't sure how it would help at all. Although the list recommended not exceeded 3", I did 4" because that was the size of the concrete pavers I had access to in order to elevate the bed. It seems to work in one way by preventing you from lying completely flat. That way, even when you're sleeping, your heart isn't completely in the "at rest" position. After just a few short days of lying down and sleeping in this position, my endurance has been greatly improved. I think it's important to start low though because at first I could hardly take the strain of being tilted even a little. It's awful to be bedridden and housebound. I hope you find something that helps.

  6. TMJ can be a symptom of EDS. And it is also possible to be hypermobile without knowing it. I measure 7 out of 9 on the Beighton Scale of hypermobility, yet I never thought I was any more flexible than anyone else until I was measured. If you are in the US, you need a geneticist to diagnose EDS, preferably one who specializes in connective tissue disorders (Marfan, Sticklers, etc.) in the UK, some rheumatologists can diagnose it as well. In the US however, most rheumatologist seem to be pretty clueless.

  7. I've mostly been seeing my neuro's nurse practitioner lately since he's so busy, but they seem to be drawing a blank beyond "it's not MS." I asked to have my B12 tested since I'm a vegetarian, but they didn't seem to think it was likely.

    It is disturbing. I have constant tingling sensations crawling up my legs and I often lose my balance for no reason at all. I think whatever is doing this is definitely what caused the small fiber neuropathy too. I often have on and off numbness which is why I ignored it at first, but this is the first time it's gone on for so long and lead to other symptoms too. I have an appointment with the NP on Wednesday and I hope to get some more info then.

  8. Has anyone had their small fiber neuropathy progress into large fiber neuropathy? Or developed large fiber neuropathy for any other reason? In the last few months, I started having trouble with numbness and tingling in my feet. I also noticed a lot of other bizarre symptoms, like not being able to tell temperature changes (putting acetone nail polish remover on my toes and not being able to feel the coolness as it evaporated.) I tried to ignore it, but when the tingling started creeping up my legs, I made an appointment with my neurologist. That's when I found out that I couldn't walk in a straight line (ataxia) without stumbling or tripping. I also started having trouble walking up hills or on uneven ground.

    My MRI was normal, but my EMG showed loss of my ankle reflexes and sensory neuropathy. I have EDS, but I have no idea what might be causing this neuropathy. Presumably, it's the same thing that caused the small fiber neuropathy...? My POTS has also gotten much worse recently, symptoms of gastroparesis (unconfirmed via testing), lower blood pressures and higher resting heart rates (I am always tachy at rest now.)

    Has anyone had an abnormal EMG with their POTS, or a large fiber neuropathy?

  9. I have both EDS and seizures associated with my POTS. My little sister is going through something similar: I've been diagnosed with EDS, she hasn't yet, but she is having bizarre symptoms. Realistically though, I can look at my sister, see her Marfanoid body type and know she has EDS and from there reason that her symptoms are probably caused by dysautonomia. She might not necessarily have very flexible joints: my sister only has one or two.

    If your sister has no such 'dead giveaways' I think it'd be really smart to have her evaluated. Don't rely on the doctors to 'discover'it, it might take them forever. If you suspect her symptoms are dysautonomia, and her doctors are coming up blank, steer her in the correct direction.

  10. I hate when that happens. I think it's not so much a drop during the night as just the normal lower blood pressures you have during sleep falling slightly into the too low range. That's all it takes for a burst of adrenaline though, and resulting tachycardia, getting jolted awake, etc. I always eat something super salty before bed, that usually works.

  11. She is worth the trip. I have only seen her at University Hospitals of Cleveland where she used to be employed, but Dr. Chelimsky herself is one of those few doctors who is both very, very knowledgable and very, very kind. She agreed to see me even though I was 30 years old and was always compassionate to me, she works in her tandem with her husband who is a neurologist and they make a great pair. I wouldn't hesitate to go see her.

  12. I have EDS and have small veins as well. I once took a picture where they had stuck me eight times before finding a vein. I had bruises all up and down my arms from where they'd gone right through them. And yeah, I have the roly-poly veins. Phlebotomists say, "but I just had it!" and "it moved away from me!" These are things that you won't find in any medical journal though, just a kind of word of mouth trait that many EDSers notice they share.

    Also, sometimes you aren't a good judge of your own hypermobility. If you've grown up thinking you're normal, you tend to think that others are the same as you, when they aren't. I didn't think I was vey flexible, but when I was evaluated by a geneticist, I scored 7/9 on the Beighton scale where the average person scores 2.

    Soft and translucent skin and both traits of several types of EDS. If you're curious, it can't hurt to get evaluated, especially if you're close to a good geneticist. I had to get a diagnosis because my joint pain was out of control and whenever I tried to get help, doctors would tell me POTS doesn't cause joint pain and mock the idea that my joints were sliding around in the socket. The only way to get treatment was to officialize my diagnosis.

  13. It's been a miracle drug for me. I take a fairly high dose, .2 mg everyday, but the only side effect I suffer is low potassium, for which I eat plenty of bananas and potatoes. Initially I had some insomnia, but I took care of that by taking both pills in the morning instead of one in the morning and one in the evening. That was a bit of a trade off, but compared to the fainting, seizing, puking mess I was before it was worth it.

  14. Insensitivity is not just a part of EDS. It's so common, it's been suggested as a test to tell EDS from harmless hypermobility. If I weren't on my phone I'd give you the links, but it's something to strongly consider visiting a geneticist for, in my opinion, especially if you're of childbearing age, if you have children who are ill, or if you are wondering what caused your POTS.

  15. Thanks for the amounts of what you take. Do you find it makes much difference for you?

    The 'mito cocktail' I take is at least as necessary for my daily function as my florinef and beta blocker. When I tried to go without them, I ended up housebound, almost bedridden. They take time to build up and leave the system I find, especially CoQ10 and L-Carnitine, so if you try them give them time, like a month at least.

  16. Hi issie,

    I take 1200mg of CoQ10 each day. It's expensive! I take 990mg of l-carnitine, 900mg of alpha lipoic acid. I misstyped, not b6 but b2 and 200mg twice a day.

    It's on both sides. Mito patients with EDS and EDS patients with mito. (More of the former, probably because their docs are actually paying attention.) If you put your ear to the ground in the mito communities, there's a few discussing it but they don't seem to quite understand it, saying things like "If you have EDS, your dysautonomia stays the same." and "People don't get very sick from EDS."


    In my fondest dreams, were just sisters from another mister and I never have to hear the words "benign hypermobility." again.

  17. My doctor told me he felt I had it due to all my GI troubles and low CoQ10 levels, but would not test me, much to my consternation. I take a mito cocktail: Large doses of CoQ10, Carnitor (prescription l-carnitine), alpha lipoic acid, vit b6... When I tried to cut them out due to money problems? Woe to me. I found myself housebound again. So I think he was onto something. Too bad we'll never know.

    For those interested, many in the mito community report having hypermobile joints and a mito doctor at the Cleveland Clinic is beginning to send his hypermobile patients to the geneticist who specializes in connective tissues there. Something to think on.

  18. Do you (or might you?) have a connective tissue disorder? I'm not aware of any association between POTS and dental issues, but I do have an article written by a dentist about POTS patients that mentions EDS as a cause of dental pathology. My gums are receeding as well, and all my teeth are loose.

    Has your dentist been able to come up with anything?

  19. I have Classical EDS. I went both times to a geneticist for my diagnosis, never had much luck with rheumys. They dismissed my hypermobility, or insisted that EDS was too rare to actually...happen, I suppose :blink: And yeah, it hurts. I get a lots of subluxations in my hips and shoulders.

    Everyone else has mentioned the treatments: PT, splinting, pain medication. Most likely, a combination thereof. For the best doctor, I agree with forevertired, a physiatrist or doctor physical therapist is the way to go.

  20. I follow you, Naomi. And you're right about beta blockers; too much can destroy the compensatory mechanism. At the same time, a small dose can help keep the tachycardia from becoming too drastic.

    This is all assuming that pooling is the mechanism of the POTS and that the tachycardia is hypotensive tachycardia. It's not the case for everyone.

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