Numb Newbie, Going To Vanderbilt

[Clavicle]

hello, i am new with hypermobile eds.......

i have a longer intro post i am working on but i have quick questions!

my neuro is referring me to vanderbilt at my request. my current sx are mysterious paresthesia/fatigue in all my fingers (since 2010), tingling, horrible jaw pain, neck pain, heavy limbs, cognitive problems, dizziness, nausea, choking, trouble breathing, palpitations, extreme car sickness

i'm new to testing, haven't even had a basic tilt table test. are there any specific tests the autonomic center could run for my paresthesias? so far ive had emg/ncv/cervical mri/thyroid/b vitamins all "normal"

would small fiber neuropathy cause finger fatigue or is that large fiber? my neuro would not "put me through" a test for it, not sure why.......

thank you!

[sue1234]

Welcome! Reading your symptoms made me first think of a brain/cervical neck issue. I see you had a cervical MRI...can I assume you had a brain MRI also? I was curious was "ncv" was?

[Clavicle]

no! ive been to 2 neuros and they did not rec a brain mri. i assume you mean for MS?

in 2010 i had an episode with "shooting pains" up and down both my arms, that's when they both went numb.. it is surprising all my tests came back normal.

ncv=nerve conduction velocity, they measure nerve signals (median/ulnar for me) to your fingers

[Clavicle]

my dys flares up the worst when im grocery shopping for some reason, is that common?

[Katybug]

Hi clavicle,

Have you had an upright MRI? It shows different issues than one that is conducted supine. Interestingly, due to my own issues, I was researching lateral medullary syndrome last night. It might be worth it for you to Google that and see if you feel it warrants a conversation with your docs. I am off to a neurosurgeon several months from now because of changes in my upright MRI from last year to this year. My geneticist suspects this syndrome as I have a disc compressing my spinal cord in my neck which only shows up in the upright MRI.

[corina]

Welcome to the forums clavicle! Could it be that your problems are caused by standing still too long? If so, that is a typical POTS/dysautonomia thing. Hope this helps!

[looneymom]

Hi and welcome to the forum. I don't know to much about these symptoms but I'm sure other people can help you out. Hope you find the answers you need.

Rachel

[dkd]

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.

I have shortness of breath ( worse when shopping also) and it was really bad yesterday. Hubby asked me why I never asked to go to Vandy (I live really close) but I always thought I wasn't 'bad enough'. I am able to work, but I'm miserable most of the time because I stand on my feet.

Anyway, good luck at Vandy and let us know how it goes.

[Clavicle]

Hi clavicle,

Have you had an upright MRI? It shows different issues than one that is conducted supine. Interestingly, due to my own issues, I was researching lateral medullary syndrome last night. It might be worth it for you to Google that and see if you feel it warrants a conversation with your docs. I am off to a neurosurgeon several months from now because of changes in my upright MRI from last year to this year. My geneticist suspects this syndrome as I have a disc compressing my spinal cord in my neck which only shows up in the upright MRI.

hi zebra, no i have not had one but ive heard theyre useful in eds! was it hard to get? im in atlanta and nobody even knows about eds here. do you feel a difference between supine and upright? i will have to google "lateral medullary syndrome". ive read about chiari and how it can make your hands numb, which freaked me out. but i also read that people who have it/or disc compression (?) cannot do the valsalva maneuver without exacerbating their sx. do you know if this is true? when i do the valsalva it makes my ears pop, feels good because they're always clogged up..i guess from tmj.

i went to an emory neuro, fwiw. he wasn't helpful at all. maybe after vanderbilt ill try a new neuro who does upright mris.

my left side of my neck vertebrae/first rib/collar bone/sternum crack a lot. it doesn't hurt but its odd.

Welcome to the forums clavicle! Could it be that your problems are caused by standing still too long? If so, that is a typical POTS/dysautonomia thing. Hope this helps!

yup, when im standing still i feel like im going to faint/an idiot but my neck/jaw doesn't bother me that much. SITTING still my neck and jaw kill me. at home i never sit for more than 15 minutes because my muscles all start to feel "heavy". at work (part time), the pain in my neck/jaw is so bad i have to put on a neck brace. i have water on me at all times and salt too, because there was a point where i drank so much water that i flushed out all my electrolytes, lol

last week i walked around a mall for 2 hrs and i was pretty okay because i was walking fast, walking with the dogs outside im okay, but if i go to the grocery store i have horrible episode every time without fail. in the morning i have to walk up stairs to get to my office and its rough. my hr is 140-150. DONT TALK TO ME.

[Clavicle]

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

[Katybug]

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.

[Clavicle]

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.

[Clavicle]

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.