Shannoncr

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 😞

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.

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.

@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.

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.

@Vickie5297 do you take the extended release adderall? That’s what I’m on & I don’t get that crash feeling from it.

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.

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.

@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/

@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 😢

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.

I get tachycardia after eating. sometimes I get sweaty too lol.

@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!

@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?

@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

my mom is an LPN but she’s smart enough to be a doctor. for years, she worked on the labor & delivery unit at children’s hospital of buffalo. she then went on to work for OBGYN private practice but she wore many hats there. I think I am having joint pain. I can’t tell if it’s my joints or my tendons. my hips keep locking and I have to pop them in order to be able to move comfortably. my ankles are sore but it’s not the ankle bone, it’s where the top of the foot meets the ankle. sometimes it feels like they’re getting stuck & they give out on me often (they always have given out on me, as a kid in gym class it was so embarrassing) my shoulders are sore. My elbows hurt but it’s the inside of my elbow. my fingers & wrists are really sore. my index fingers, at the top knuckle, are twisted slightly towards my middle finger. my thumbs, I notice it more on my left hand because I am left handed, hurt but only when I am writing or using them where they have to be pointed inward towards my palms. my left thumb knuckle is about twice the size of my right. my left knee is swollen on the left side of the knee cap & I have a bakers cyst behind the knee. my neck is sore & tender to the touch. my jaw often locks & cracks (that’s pretty painful) I am exhausted all the time. I get winded easily. my muscles in my arms & legs feel like I’ve been doing push-ups & squats all day. Driving is hard because of this. my arms are so heavy on the steering wheel lol. I get headaches almost daily. I am so winded all the time. I do have really bad pain in my sternum (sometimes it cracks when I stretch) & it hurts pretty bad when I breathe deep. I’ve had this before & it has always come & gone. This has lasted about a month now. I have noticed a drastic decline in my ability to do things I could do with ease just last year. & then I have a lot of the typical POTS symptoms (which I haven’t been diagnosed with either, still waiting on my primary care to review my neurology medical records to have a consult with Dr. Blitshteyn) tachycardia, fainting, brain fog, balance issues, etc. I have weird stomach issues, comstipation, bloating, often feels acid-y & full all the time. Lately, I’ve been just feeling like that feeling you get before you get the flu. My oral temp is usually normal 97.8-99.5 but my body temp is usually like 103-104. I get super bad night sweats, like change your sheets the next morning night sweats . when she did my exam, I moved all my joints perfectly without any pain that’s why I’m not sure if it’s joint pains or muscle/tendon pain. I do have a really high pain tolerance so for me, the pain is more of a nuisance but it’s scaring me because of how quickly it came on. I’ve had some of these aches & pains before but I can’t ever remember a time having them all at once. the heart stuff &headaches I’ve had for as long as I can remember. i don’t have any rashes. I did have this crazy rash two years ago that started on my left shin, the skin all peeled off like a sunburn & then it moved to my right leg then my right arm. I was just told to keep it out of the sun & put vitamin e on it. I had it for a year. I am & always have been sensitive to the sun ( I get sun poisoning several times in the summer every summer) but I don’t think I have any of the clinical symptoms of lupus. she also didn’t think I had lupus but said she wanted to test just in case. she also said exactly what you did, she wasn’t going to offer treatment until all the results came back. she did say if these results come back with nothing, she will dig deeper. she was the medical director of rheumatology department at a teaching hospital here in buffalo. She’s young, only like 40something. but that’s about it, I think. do all of your doctors work together? i will probably take you up on the offer to DM you if I get a diagnosis, thank you so much.

here’s what she’s testing for: 14-3-3 ETA protein cyclic citrullinated (ccp) IgG rheumatoid factor c-reactive protein, quantitative ESR, westergren urinalysis, complete DNA Ab crithidia,ifa with reflex to titer c3 & c4 serum sm & sm/rnp abs centromere B ab sclerodoma, abs sjorgrens abs anti nuclear Ab titer & pattern hla-b27 antigen vitamin d,25-hydroxy,total, immunoassay its all Greek to me. my mom is not emotionally involved at all, lol. i mean she’s sad I don’t feel well but she doesn’t think it’s anything serious. once my cardiac issues came back there’s nothing structurally wrong with my heart, she wasn’t super concerned anymore. she is a nurse, so she’s always been tough like that. which is really the reason I had thought to ask her to come. I know I haven’t been diagnosed with anything & there’s a chance I may not have a diagnosis, but is there any specific questions you can think of that I should be asking? & this is personal & you don’t have to answer if you don’t want to, but how many doctors do you have to see for your conditions? i appreciate this so much. I’ve been doing this all on my own without much guidance & it’s nice to get input/feedback from others who’ve been here before. Shannon

@KiminOrlando thank Kim. were you able to find the right treatment? i feel nervous they’re not going to find anything or give me a diagnosis because i have some symptoms of certain autoimmune/connective tissue disorders but not all of them. i went to the initial consult by myself but I’m wondering if I should bring my mom with me when I go back in 3 weeks after the results come in.

So I saw a rheumatologist for the first time on friday. she said my exam with her was “unremarkable” & she can see why I am often dismissed. I didn’t explain ALL of my symptoms, but I gave her a detailed history of all things I’ve been medically diagnosed (with test results to prove) with. she was like “wow that’s a lot” & I guess it is but they’re all diagnosed separately & I just find it hard to believe I have all these weird medical issues but nothing is connected. She order x rays of my hands, my sacroiliac joints & a bone density scan. Before I went to her appointment, I made a list of all things (that I could remember) I had been diagnosed with. endometriosis possible pcos MRI revealed part of brain consistent with small vessel disease (in 2009, I was 25. I don’t remember anyone talking with me about this but the MRI was done in the hospital. when I did see a neurologist, he said I had lesions on my brain & that I was having seizures. I wasn’t having seizures. ) syringomyelia from c5 to thoracic region (likely idiopathic or posttraumatic) Low ferritin levels -IV iron infusions were required because supplements didn’t work - some sort of malabsorption thing (likely will be again as my ferritin is 12) all my cardiac issues with a structurally sound heart (aside from mild mitral valve prolapse & mild tricuspid regurgitation) osteopenia of the spine ANA positive Raynaud’s Red ear syndrome hypothyroid she also ordered 15 different blood tests. she said if these come back with no results, we will just have to dig further. part of me is really afraid that there is nothing wrong with me. I feel guilty for hoping these results come back with something. but then there is another part of me that hopes they don’t find anything because I don’t want to be sick. my psych team does not think it’s psychological though. whatever is going on, it feels like I am getting worse. my sat o2 level was only 94% - i don’t think I’ve ever seen it that low for me before. do a lot of you have autoimmune disorders? or connective tissue disorders? or is it dysautonomia without an underlying cause? as cliche as it sounds, I am just so sick & tired of being sick & tired. sorry for being complain-y shannon

Have they checked for hypothalamic dysfunction? I’m not totally sure if the tests they ran would detect that.

i had genetic testing done for pharmacology - anti depressants, benzodiazepines, opioids, ant psychotics - & my body doesn’t respond well to SSRIs because my receptors (I think?) only work intermittently. I’ve never had any luck with antidepressants. Lexapro was the worst one I’d ever been on - I had seizure like symptoms on it BUT the psychiatrist bumped me up to 40mg which is higher than the recommended therapeutic dose. i hope they can one day use genetic testing for pharmacology to one day figure out which blood pressure/cardiac meds would work best for a person.

Have they checked your thyroid? Ferritin? Prolactin? (My Dad had prolactinoma) If those are off, both cause weight gain because they mess with your metabolism.

i have a dumb question, would an ANA test help diagnose dysautonomia?

@Shane I have palpitations constantly. They’ve gotten a little better but over 20% of my heartbeats are palps. they’re super annoying & literally take my breath away because they force me to cough involuntarily, I think it’s my body’s way of trying to reset my heart. @Pistol & I seem to have very similar heartbeats lol. My EP told me “usually, once we tell patients that PVCs are not dangerous, they go away” aka he was telling me it was all in my head. I now take metoprolol tartate 12.5 for breakthrough palps. I still think it’s important to have it checked out. My cardiologist said sometimes they do ablations, but the EP said that’s only in extreme cases & they need to be able to figure out where it’s “misfiring”. Have you had your thyroid checked recently? That can cause palpitations if it’s off even slightly.

@zerohours000 I have been feeling almost all those exact things for the last month now. I know what you mean about the pain in the groin... My fingers, toes, & ankles are extremely sore but not swollen. Lyme can literally take years to diagnose because of the criteria for the testing & often times you get false negatives/false positives. My friend was finally diagnosed with Lyme after years of being sick & has been tested for Lyme numerous times. I hope you find some answers & some relief soon shannon