Darlene

after my friend gives me a massage, it itches... or if the cat walks on me it feels like someone stabbing me, i feel pain, then itching. one time my moms nails went across my back, it felt like razors cutting me. anyone else?

cant they do twilight sleep (iv sedation) rather then general anesthesia?

i see grubb for dyautonomia. no, he doesnt do any testing for mcad... nor does he refer you to a mast cell specialist. he does suspect i have mast cell instability and put me on chromolyn. i asked him if he could write me out a script for ketotifen, being i see quite of people talking about this med. i told him it is not made in the US, but people are getting it. he did write me out a script for it, but i have not yet gotten in filled. people say you can get it from clarks pharmacy. he also said i should try gluten free for 30 days to see what happens. gurbb is very nice, but don't think he know a lot about mcas. he has seemed pretty distracted the past few times i have seen him.

i have wondered about lyme... because of the brain lesions, floaters, nerve damage and several other symptoms... my elisa was positive and westernblot was negative...but i hear lyme is difficult to diagnose... i did live on 6 acres of woods growing up, and traveling to states where lyme is prevalent.

how many of you have brain lesions? and did you find the cause? i have 6. the neurologist says its probably caused by headaches.

how many had an emg showing mild nerve damage? did you find the cause? how do you treat it? i have mild nerve damage... my neurologist did no testing to find out why, just wrote me out a script for vitamin b complex

mine is positive with homogeneous pattern, and other tests for lupus were slightly high

have you thought about mast cell activation syndrome

where did you go for lyme dx?

thanks for the info tachy.

and unhelpful family. i home school my daughter. it takes maybe 5 or 6 hrs. it doesnt matter if she does her work from 7 am to noon, from noon to 5. i don't understand why my parents were upset i made her go with me to my dr.'s appointment. she has gotten her homework done today. i don't get why they think i can drive by myself. i did before i became sick, but things are different now. i hate feeling alone...

i was thin growing up, 138 lbs... i got up to 172 in my late 20's... about 3 months after lexapro and metoprolol i went up to 216. i don't eat much at all.

i just got back from my rheumatology appointment. he said i had mild nerve damage and wrote me out a script for vitamin b complex. he said b vitamins heal the nerves. he also knows i am also being treated for dysautonomia & mcad. he said that if i would exercise and lose weight i could get rid of half of my meds. really!? the only way i am going to be able to quit taking half my meds is if i am cured from either dysautonomia or mcad... and , neither one has a cure. then, i wanted my daughter to go with me to my appointment because even though i may feel ok before i leave, sometimes it just hits me out of know where and i feel dizzy and lightheaded. i don't like to be driving, or alone in a car by myself when this happens. after my appointment, my daughter and i went to my parents. my daughter said she didn't gt her homework done. my parents were mad that made her go with me. they know i am sick. dr's (that have no clue what dysautonomia and mcad even is), my family... they just don't get it. oh, if you have mild nerve damage, shouldn't the dr. figure out what caused the nerve damage, and treat that... instead of trying to fix it with b vitamins.

i did have an elisa and western blot done. the elisa was positive and the western blot was negative. but i hear you can have a negative western blot and still have lyme. just didn't know if there were other tests more reliable.

oh, and how much was it?

electra, which tests did you order from IGeneX?

that's when my symptoms started too, after giving birth.

i was dx with dysautonomia in 2005. i believe there is a cause, and u have to find it. i looked at all of my medical records by different dr.'s. here r the blood tests that are positive, or high or low. ANA 1:80 homogenous pattern, ELISA positive, histone ab is high, dna (ds) ab is high, phosphatid IGG is high, d-dimer is elevated, vitamin d is low (even after taking 50,000 IU for 1 year), albumin is slightly low (one time it was pretty low), my platelet factor 4 was high... whatever that is. i also have several lesions (6) in the frontal white matter of my brain. symtoms: dizziness/lightheadedness (feel funny), nausea, diarrhea, belly pain, flushing, pain all over (some days are worse then others), lights seem brighter, sounds seem louder (like there is a microphone in my ear intensifying every sound), top part of my arms and legs feel weak, (if i hold up a news paper it's uncomfortable or if i climb stairs, i am of breath and tachycardia), feels like their is a lump in my throat, i get these burning sensations in my body like someone sent fire through an IV (feels like my nerves are on fire)... i feel this in my back, sometimes chest, arms, back... when i have this episode my pupils dilate (everything looks funny like i may pass put), then i have to pee and poop several times during an episode, then sometimes the burning is on the outside (my skin), it will feel like someone is rubbing wither hot coals, or ice cubes on me, i have several floaters in both eyes, hair loss, and other symptoms i just can't think of right now. all these abnormal blood tests have to mean something, but what? all i know is i have dysautonomia and grubb suspects mcad. after looking at all of the blood tests i have had, i am trying to put the pieces together. and ideas?

i have 6 lesions in my brain, so i assume it can...

my ana is high too 1:80 homogenous pattern, my histone ab is high, dna (ds) ab is high, phosphatid IGG is high, elisa is positive, d-dimer is elevated, vitamin d is low... and other tests are high. and i think i have neuropathy because of these burning sensations... had an emg, so soon will find out something... anyway, i think i have something autoimmune causing my dysautonomia... but what? i am sure these tests have to mean something. dr.'s sure are not going to investigate whats going on with us, so looks like we have too.

i m on lexapro. before this med my bp was pretty low. since taking lexapro, my bp is higher, and now i don't feel like i am going to pass out 24/7. lexapro also helps thin the blood, allowing it to flow more freely. i do not like the weight gain from it, and have tried to quit taking it a few times... but when i do, my symptoms get worse. weird how an ssri can help your symptoms. i tried an snri once, but it worsened my tachycardia... the norepinephrine in it i think does that. grubb does suspect mcad... does doxepin have any side effects? lexapro has none except weight gain, and helps my bp.

with inversion tables. don't you hang upside down? not sure if that would be good for someone with pots. i seen this back brace advertise on tv. wonder if it helps. http://www.alliedhomemedical.com/w2/ i have a ruptured disc, L5S1. i low back always hurts. i have nerve disc compression... the dr. wants to do injections, and i don not. you would think they would give me meds or something. i wish they knew what i went through, maybe then, they would help.

i have atleast 20 to 30 floaters in one eye and about 10 in the other, and 8 lesions in the frontal white matter. i was dx with dysautonomia and mcad. i think there is more wrong with me then they know. i read lyme causes floaters and lesions. i did have an elisa test and that was positive, but my westernblot was negative. i hear you can still have lyme with a negative western blot. does anyone know of dependable lyme blood tests. someone told me about cd57-162.

i was reading the benefits of bioflavonoids. does anyone take them, and if so what kind? it looks like even the dr. can write a script for these http://www.drugs.com/mtm/bioflavonoids.html i was reading whatever is in green tea and red wine is in bioflavonoids. green tea and red wine makes me sick. do you think bioflavonoids would be safe to take?

i don't like to go to sleep at night because of this problem. when i got to sleep my heart rate is about 70, when i wake in the night is 120. and i took get the burning sensations.