Clavicle

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my labs are confusing, at least I don't have lupus?

c3c 70 (90-100)
c4c 11 (16-47)
ch50 36 (31-60)

IMMUNOGLOBULINS
igA 188 81-463
igG 1076 694-1618
igM 174 48-271

CYCLIC CITRULLINATED PEPTIDE (CCP) AB (IGG)
<16
ReferenceRange Negative: <20 WeakPositive: 20-39 ModeratePositive: 40-59 StrongPositive: >59

ANA negative
RA Factor <14 <14=negative

CRP .3 <8.0

thanks all! another quick question, are you charged for each TTT? it sounds like its common to get multiple tests and i have to pay 300 dollars each time AND my deductible is high......if i am going to have to pay this much, the ttt better be 10 minutes!!

5, or even 10 mins is way too short. I had a 40 minute TTT, and good thing too cos at 20 minutes my BP dropped and I almost passed out, so they wouldn't have caught my vasovagal syncope if it was only 10 mins. I say go back, though 32bpm should be enough for a POTS diagnosis anyway I thought.

yeah see thinking about this drives me crazy. my heart rate was going up right as the ended the test? okay!

what other tests would they do for small fiber other than qsart? does anyone here have small fiber but passed the qsart?

. Mayo gives instructions about what not to eat or drink 24 hours prior, but obviously don't take in a lot of salt, caffeine etc...They require you to be off all medications for a great deal of time beforehand.

fwiw they do not do this in jacksonville

that's crazy about your feet! i think i have somehting much milder in my arms

my feet were freezing before the test. they had to spend a few minutes warming them up first.

Right but who has had a FIVE MINUTE TTT?

ANOTHER QUESTION while im at it,

my hand started cramping up really badly from the BP cuff going on and off, is that normal? it's happened at home too...

I was hooked up to a beat-to-beat monitor which was checking BP/HR constantly and not just every few minutes like they did with the cardiac TTT. Based on the tracing they got from that, the doc was able to use that info to further confirm his thinking about what subtype of POTS I had.

this sounds ideal

i cant imagine just testing at the start, 5, then 10 minute mark. that's goofy

Thanks everyone. I feel better knowing that the 5 minute testing is uncommon and that many of you had to repeat the test! I had no idea there was so much variation in testing, jeeze

Do you remember why they quit? Your heart rate went up 32 point, and I thought their definition was going up 30 points in 10 minutes(or under?).

yes 32 beats at the 5 minute mark (who knows what it would've been at 6..7..etc) then they lowered me back down, saying it was over. there was no reason to quit, it's like they didn't administer the test properly. the report says "heart rate response was appropriate". what?

i also drank water an hr or 2 before the test

Hello All,

I need some advice. I took off work to go to the Mayo Clinic at Jacksonville Fl for a POTs diagnosis.

I should've paid more attention, but I mean, it's Mayo clinic! Anyways, my blood pressure was elevated for me..due to stress (i drank a lot of caffeine the day before too) and I was walking around quite a bit.. I could tell it was elevated because I felt a lot more *alert* than usual.

They administered the TTT but it was only for 5 minutes. So 2 days later, after I'm already home, they call and say the test should've been administered for 10 minutes. My hr only went from 76 to 108 which apparently is normal. I cannot take off work again so I will not be able to go back

QUESTIONS:

Would a 10 minute TTT make a big difference?

Would it be okay to get the test locally by a cardiologist or should I push to find a neuro ttt? Does anyone know of a good dr in the Atlanta area?

Do you think Mayo will charge me if they messed up on the test? I don't particularly care because I'm sure insurance will cover it, but I'm curious

Thanks!!

my hands say you! this would take me awhile to google, ow

complex regional pain syndrome

hello,

so ive had a rheum and a neuro suggest i have small fiber neuropathy (without running any tests)

and a pt who believed i have crps

what would be the difference between the two? could sfn be the result of crps? thanks!

my neuro tested my hr/bp supine and standing 2 minutes after i had walked in from the waiting room and he said it was normal. don't i have to be lying down for a bit? i have eds and ive fainted before so there's really no questioning my dysautonomia but i was just curious...

for anyone with neuropathy, i learned this..its interesting:

http://dujs.dartmouth.edu/news/why-do-our-fingers-get-pruney#.UrIUOuIueZo

"In the 1930s, however, researchers realized that patients with fingertip nerve damage failed to experience the same pruney effects (1). It has since become apparent that the wrinkling of skin associated with exposure to water is due in larger part to the function of the nervous system than to osmosis (2)."

I just soaked in a scorching bath for 20 minutes and they barely wrinkled, great

Does this affect Aetna?

TTT is so basic!! Thats ridiculous!!

good suggestions

i was playing around with eye shadow around the time that my eyes completely freaked out and my eyes never recovered. i think the only eye makeup i can wear now is eyeliner. anything powdery is a huge no no.

Magnesium can make me feel worse, i take 800-1000 mgs a day tho

Caffeine feels awesome til i crash!

Voted. huge issue for me, chest has a constant tooth ache

My co2 is always very low for whatever reason

i have heds and low inflammation too, but im in major pain 24/7 and have been non stop for the last 5 years

5'8 110. Female

people have always commented on my weight, and it upset me, but when i think about it..the only person i should listen to is my mom. both my parents were rail thin.

i just want muscle at this point to hold my joints in place.

does health insurance cover plugs?

i used restasis for six months, helped me a little bit

i wonder if my dry eyes are related to dys too, i tested negative for sjogren's

The upright MRI wasn't hard for me to get. My geneticist ordered it as she has suspected either chiari or some sort of cervical spine issue since our first appointment last year. Then I Googler "upright MRI Baltimore"ad it came up with a lab that conducted them in my area. As far as the valsalva maneuver, I don't know what the medical books say, but I can do it just fine. Of course, I can't makei up the steps in my house without sitting down for 5 minutes at the top (but they don't have a test for that. Lol!). As far as upright vs. supine, I do feel worse when upright (both sitting and standing)in some respects such as blood pooling, dizziness, shortness of breathe. I also get very fatigued holding my head up. As pain is concerned, I have pain no matter which position I'm in so I have become a world class fidgeter. I can't stay in one position too long or it hurts so I have to move and find a different pressure point. I also have to balance resting and moving around as I I have more joint pain and migraines if I don't move around enough and my muscles get too locked up with trigger points.

oh yeah that sounds just like me, GREAT.

even if my hands weren't numb it sounds like i should get an upright mri while i have good health benefits.

the neuro did some test where he held my head up with his hands and he kept saying okay, now relax your neck. HUH? no no, relax it. and then i did and heard all kinds of gross cracking noises.

here's my history. i dont expect anyone to sit around and read this but feel free, im just trying to remember everything i did. i always issues but experienced a huge decline at age 24......

2007—My only documented syncope episode. I drank an espresso shot before a class at the zoo, then stood around outside in the heat at 9 am. I fainted and the nurse wanted to call the ER because my bp was so low but I talked her out of it. I feel extremely panicky standing in lines, riding the train, etc but I brush it off as an anxiety disorder.

Late 2009-- I developed pink eye in both eyes and I thought it was some weird bacterial infection, but it was actually just because they were so dry. I can’t wear any eye makeup anymore and I can barely wear contact lenses I developed wrist tendinosis/tendonitis. At around this time I noticed my arms were “swollen” after I would wake up in the morning. The entire arm.

Early 2010-- I experienced a few zingers/zappers up and down my arms doing really basic stuff around the house. My hands would tingle but they were in no way numb. I remember thinking my arms felt very heavy and there were a couple of days I could not even abduct them above 90 degrees. I did not have any health insurance at the time and was convinced this was all just an RSI. In retrospect, I’m like 80 percent sure I was just injuring the crap out of my brachial plexus. The swelling is still mysterious to me. Cognitively I’d say I was a billion times better back then. I had no neck pain. I sat in bed and read books for fun which I cannot do at all now.

March of 2010--I played a Wii and used my arms “too much”, went to bed and woke up with both of my arms completely swollen in the tricep area and shooting pains. I couldn’t bend or straighten them. And my hands were completely numb. My elbows were in a lot of pain and I hated bending them. I went to a crappy GP and she ran an RA test and it came back normal. i went on celexa around this time for about a year and hated it.

August of 2010—One day for no apparent reason, I regained sensation in both my hands at the same time. This lasted for a few days. My dad was yelling at me to lift weights so I did, improperly I’m sure, the swelling came back full force and my hands went numb again. They are less numb but still numb to this day. I went to a rheum and he said I was “overanalyzing things” and I was “double jointed” which I did not take seriously. I went home crying, feeling stressed out and insane.

September of 2010-- I went to a chiro *shudder* he says I have EDS and “Thoracic Outlet Syndrome”. He gave me strengthening exercises to do without any supervision *cringe* and does a lot of neck adjustments *cringe!!* the neck adjustments did not help at all and in fact, each time I went back i felt a little stiffer/worse off. Up until this point I had absolutely zero neck pain, just shoulder pain.

Oct 2010—I tried a nerve glide for my brachial plexus where you turn your head the opposite direction from your arm, fully extended. I did this, one on each side and a few hours later my body was on fire and I couldn’t even hold up my head. Long story short, I think I stretched my bp horribly up into my neck all of my symptoms were like someone with a full blown whiplash injury, ESPECIALLY the dysautonomia/brain fog. Ive felt like a complete idiot ever since then.

March/April 2011— started barely working part-time at this point. sitting my back would "catch on fire". All my muscles would burn as soon as I woke up so I started taking a lot of ibuprofen. Hands were the most numb at this point, I had horrible firework sensations, etc. Neck spasms, felt like I was choking, couldn’t breathe.

I asked to be referred to a PT. It took me awhile to find good one because I am so “sensitive”. She told me to wear a neck brace ASAP bc im giving myself whiplash and suggested I have CRPS—other than being too sensitive, im not sure I agree with this bc I don’t sweat/turn red/grow hair any of that. I started taking magnesium glycinate. At first I had a very bad reaction that felt like a 3 day long panic attack with my heart beating in my head nonstop. 3 months later the daily burning sensation in all of my muscles went away. Since then I’ve experienced ”flare ups” and peripheral neuropathy. The flare ups have gotten progressively better over time but the numbness and random tingling remains

March 2010-August 2010 I had the following tests:

Spine ortho--

EMG/NCV=negative

Neck MRI=normal

Vasc surgeon--

Vascular study for TOS=normal

Rheumatologist (thanks to suggestions specifically made by my physical therapist--

B Vitamins=normal

Electrolytes= normal except for magnesium which was .5 (1.5-2.2 range)

wesr= for inflammation..low aka good

Geneticist—

I do not know the actual numbers but my blood pressure was hypertensive. (This has happened several times. I’m either hypertensive and/or tachyardic. I have white coat anxiety too )

Said hypermobile eds likely

Nerve sensations I’ve experienced since my I hurt my neck/bp area: shooting pains, burning, zapping, tingling, chronic numbness, “swelling”, pinching, extreme coldness, fireworks, heaviness, extreme fatigue, dizziness, choking, trouble breathing.

After this round of doctors I started pouring all of my paycheck into physical therapy. My health insurance denied half my claims, but it was worth it. My pt really helped get my spine/neck pain under control with pilates/neck bracing. My shoulders still wing, unfortunately, but they don’t really hurt and the muscles surround them rarely spasm now. I strengthen them daily. Sometimes they wing more than others but overall id say they wing less. I have to think about holding them and my neck in place CONSTANTLY. Its exhausting. Im 90 percent sure I had some variation of both of these http://www.neurology.org/content/34/2/212 droopy shoulder syndrome

And pec minor “syndrome” from unstable shoulders, dur

Early 2013—

I did a few pilates exercises incorrectly and notice tingling in my feet. Also my legs have gotten progressively heavier over the last year. It’s the worst when I walk around the grocery store and I have no idea why.

Orthopedic—for heavy legs, lumbar xray=normal

New neuro—about numbness in my hands, has no clue

Another vasc study for tos—negative

Pain management dr—recommended hand cream and said I have neuritis.

Hand specialist—gave me a cortisone injection my wrists which did absolutely nothing

July 2013—I went back to my original neuro and he says based on a pinprick test I have carpal tunnel (groan, then why are my ulnar distribution and radial numb too!), I had a second ncv on my median/ulnar nerves..i don’t think they ever checked radial, anyways, they are normal. He said I might have “small fiber neuropathy” even though the symptoms don’t totally match, but he does not want to put me through testing.

Other random tests I ordered myself—my tsh is a little high but my ft4 is good=1.4, ft3 bottom of the range, during the luteal phase my estrogen is midrange, progesterone out of range LOW, free testosterone is bottom of the range. Oh and I ordered one of those 3x a day coritsol saliva tests and the first sample was too high but the rest were normal. hs-crp= .3 (i don't remember the ranges but that's good/low). my blood sugar was impaired despite having a normalish a1c at 5.2. i went low carb and that helped a ton.

You didn't happen to get a flu shot right before your symptoms in 2010 did you?

I got one in Oct 2010, and 3 days later woke up with terrible left arm pain and weakness, and a week later had numbness in first and middle fingers that I stil have today. I also have tingling on left side of lips, random muscle twitches (eyelids and face mostly), and tingling in left foot. I have seen 2 neurologists and like you, all my tests are 'normal'. The last neuro said some people just have tingling and there's no reason for it -- say what??? I think there's a reason, they just haven't found it. I don't know if it was the flu shot or not, but I have my suspicions. I don't suppose there's anything that can be done for it anyway at this point.

no i did not get a flu shot when this occurred, but i used to..now im very anti-flu shot. i read a lot about brachial neuritis, which can happen from a flu shot because i have all of the symptoms. my shoulderblades wing too, especially my right shoulder. ive gotten tingling in my feet and along my spine. if i irritate one area, like say my lower back, which happens when i do pilates, my fingers tingle. i agree there's a reason for it when i walk in the morning and swing my left arm, my hands tingle. it drives me nuts.

do your fingers feel tired? i have to use a chiclet type keyboard because tehy're so tired! and i can't double click on a mouse, i have to hold a marker in my hand. any extra pressure i pick up on. its nice hearing from people who have mysterious numbness but normal tests. i can type so much better though..so i guess that's something