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About Shannoncr

  • 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 until this visit. I went to see her thinking I had some sort of connective tissue disease (which I still could but AS fits a lot of my symptoms) I too have a syrinx! Mine goes from c5 to my thoracic region (I don’t know the number) I was diagnosed with syringomyelia in 2010. Sometimes the syrinx can cause widespread pain, based on where it is. I found this chart a while back. Do they know how or why you have a syrinx? You’re literally the first person I’ve ever spoken with that has one too.
  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 Ankylosing Spondylitis & a definite diagnosis of fibromyalgia (which is super weird as I have no tender points) I have to do physical therapy, she’s started me on NSAIDs & gabapentin, then hopefully insurance will approve MRI so she can see if there’s already damage. If this treatment fails or symptoms worsen, I will start injections and/or immunosuppressants. She also said I could have rheumatoid arthritis but it’s just not showing in blood test yet. Apparently I am mildly hypermobile. She said autoimmune disorders come in clusters & she has quite a few patients with autonomic dysfunction as well. She said it generally takes 10years for someone to be properly diagnosed as it can take that long for all the diagnostic criteria to be met. She said some people never meet the criteria but they still need treatment to feel better. Ankylosing Spondylitis is frequently misdiagnosed as fibromyalgia in women. It been considered a man’s disease. Symptoms in women present differently so doctors don’t suspect it. Ankylosing Spondylitis is a systemic disease that can affect the whole body. @dizzytizzy if your doctors are willing, ask for X-rays of your sacroiliac joints.
  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 of us have thyroid issues. I’m sorry you’re dealing with all of this 😢
  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’t right. It doesn’t matter how bad the pain is, it’s there & we should take a look at that”. I’m thinking maybe once my results come back, she’ll have a better idea as to what to do next or what to look for next. Were your doctors able to figure out that everything you’re dealing with is all connected? It seems highly unlikely that one person would have all these random medical diagnoses but none are connected, right? unless we are just unlucky ones 😉 hope you’re doing well now!
  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 off antidepressants for 10yrs. I had been on so many different kinds. I also have prescription for Xanax (.25 but I only take half) but I am soooo sensitive I rarely ever take it. I can’t even remember the last time I took it. I feel so hungover on it days after I’ve taken it. Do you get restless legs?
  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 was diagnosed with osteopenia (2009). I brought the MRI results from a neurologist in California who originally diagnosed me with syringomyelia. I also brought my gene testing for pharmacology. She looked at it all but only kept the bone density scans & blood work. She was able to access some things on her own because of the system healthE link, which i always sign up with any time a doctor offers it. It's convenient because then they can access all your records. Im sorry your doctors aren't taking you seriously. I just happened to get lucky with my psych team - they believe me & are trying really hard to help me figure this out & see the right doctors. It was my psychiatrist who encouraged me to see a rheumatologist. It's really frustrating & has happened to me my whole life. Just keep trying to find the help you need. Do you have parents/siblings/friends who are there for you? I sincerely hope you find the right doctors soon & get some relief. Shannon
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