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About Shannoncr

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    Advanced Member
  • Birthday 05/09/1984

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    Western NY

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  1. i have no answers for you but I know exactly how she feels. I can’t nap during the day or I get terrible migraines & nausea. it’s a really awful feeling being so exhausted but you can’t sleep because if you do, you’ll feel sick. I’m sorry, I wish I could offer more help 😞
  2. I take succinate daily (25mg) & tartate (12.5mg) for breakthrough palpitations. neither has done much for the tachycardia with position changes - it’s slowed it down some but not a whole lot. I take it more for blood pressure though as I now have high bp. hasn’t done much for that either. the difference is that succinate is an extended release. the tartate is fast acting but doesn’t last as long. at least that’s the way my cardiologist explained it.
  3. I had to get IV iron infusions. I’ll likely need them again soon as my ferritin has dropped again. Iron supplements don’t work for me but I know if you do take iron supplement, it’s best to take them with vitamin c. If you take calcium, don’t take it with the iron.
  4. @dizzytizzy MRIs are way better for diagnostic purposes but if you didn’t/don’t have inflammation in the sacroiliac joints at the time of the MRI it might not show - my rheum told me my X-rays didn’t show much at all but she didn’t really expect them to. She thinks I am early in the disease. I’m not sure if she’s looking for inflammation or to see if ive already started fusing. I just know rheumatologists usually order X-rays of the hands to look for joint erosion but I’ve had chronic low back pain for years but always attributed it to sciatica. I had never heard of ankylosing spondylitis unti
  5. I have a positive ANA - this time it was 1:80 with homogeneous & speckled pattern. I went to rheumatologist & she tested for a whole bunch of stuff. Everything came back normal (aside from i have c4 deficiency). My rheumatoid factor came back borderline, along with two other tests specific to rheumatoid arthritis. she did another physical exam (I just saw her three weeks ago prior to getting bloodwork & xrays & bone density scan - which came back normal aside from osteopenia which I already knew I had, except now I have it in my hip) she gave me a tentative diagnosis of Ankylos
  6. @Vickie5297 do you take the extended release adderall? That’s what I’m on & I don’t get that crash feeling from it.
  7. you & I have a lot of the same symptoms. this happens to me also, except I don’t get dry eyes. They itch & water. But I get the stuffy nose/runny nose. sometimes I get a stuffed up itchy nose. It’s always in the AM & in the evening.
  8. it’s happened to me my whole life. first time it happened, I was like 5. pediatrician was doing a finger stick on me & I told my mom I felt tired & I fainted lol. you definitely have to learn what triggers you may have like @Pistol said.
  9. @jklass44 you could look up Dr Svetlana Blitshteyn... she is a neurologist that specializes in dysautonomia... she does video consults so you won’t have to leave your home. http://www.dysautonomiaclinic.com/
  10. @brigit2006 I haven’t had surgery, but I have syringomyelia which is like a cyst growing in my spinal cord. It goes from my c5 to my thoracic region. I’ve read POTS is often associated with Syringomyelia because of nerve damage so I’d assume it would be similar if you suffered nerve damage in surgery. I found a picture/chart that shows all the different nerves & systems in the spine & what possible symptoms could be associated based on the area of the spine where there may be damage. my thyroid is also low but I don’t know if it’s associated with POTS, though it seems quite a few
  11. it happens more so when I eat dinner but I think that’s because dinner is a bigger meal for me. but it’s not every time I also get that full feeling in my stomach even if I haven’t eating much or anything at all.
  12. I get tachycardia after eating. sometimes I get sweaty too lol.
  13. @TCP no she didn’t check me for EDS, but I know I definitely don’t have the hyper mobility kind. I’ve seen the test & pictures of what people with hyper mobility can do & I definitely can’t do any of that lol. I think she examined fairly thoroughly. I went in there not knowing if I even needed to see a rheumatologist because my symptoms are pretty vague & I’m not in unbearable pain. Her clinician spoke with me on the phone & said “if you’re having minor joint & muscle pain without any injury, you should probably come in because that’s your body’s way of saying something isn
  14. @Pistol are some of your doctors weird about you taking ritalin? I’m on adderall xr 10mg & modafinil & the EP was like “these meds are causing your palpitations” but I’ve been on them for 8+ yrs & was diagnosed with tachycardia & PVCs before I went on any stimulants. but SSRIs don’t really work for me as my transporters or receptors only work intermittently. Lexapro caused me to have seizure like symptoms but the prescriber bumped me up to 40mg. I came off that & we tried the lowest dose of celexa to see if that would be better & the symptoms came back again. I’ve been
  15. @zerohours000 I sleep about 5-6 hours a night. I am an incredibly light sleeper so I am up several times throughout the night (I have two dogs who sleep in bed with me) but I never wake refreshed. There are some days that I want to take naps but as weird as it sounds, I can't because I always wake up feeling worse. I get bad headaches & nausea. I brought all the blood work I had had done recently, as well as old blood work that showed how low my ferritin was & what it was after IV iron infusions. I brought two old bone density scans, one normal results (2006) & one after I wa
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