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Sophia3

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Everything posted by Sophia3

  1. Thanks Reen. I've already read scans of stuff on Sjs but appreciate the link...I've been HEAVY user of Chapstick for years..but I've also needed DDAVP and so between that need and ANS junk. so many things blur. but since eye surgery both the surgeon suggested I get this test as has my optometrist but he's seen me at least 15 times in last few months and my eyes varie in dryness. Also Reed, if you want to reply, just hit the REPLY button. Tough for me to re read everything in duplicate and saves space for this site. It's TOUGH to come here and read a long posts so when folks QUOTE everybody it's tedious.
  2. Hey Let me clarify. I KNOW it's possible to have Sjogren's alone (Primary) but the fact my ANA and SED rate tests were "Normal" and the ssDNA positive is what has me surprised. Usually if you have Sjogren's one of the pre screening tests were also positive (ANA & SED) sigh. Thus Lupus is often looked into...I've felt horrible and disabled for years but my fatigue stinks even for me. Good luck with what you find out, too. I've had HORRIBLE COTTON mouth for over a decade...and last few months dry nose...then the eye surgery that trigger sudden dry eye issues. Oh and this surgery is not supposed to even have any real recovery time and no 'reports' of dry eye side effects. Anyway, I know Sjs can be alone..it's the pre testing NORMAL that's confusing. Sorry if I was fuzzy in that info earlier.
  3. I did not want to hijack the other Sjogren's so excuse my own. Ok I am confused. MANY times over the years I've had initial screening test for autoimmune stuff (SED rate & ANA that I remember off top of my head) NORMAL. Then my ANS endo doc ordered those and a boatload of sicca syndrome tests for Sjogren's. My on going cotton mouth of MANY years (blamed on ANS stuff) has worsened and since my iridotomy surgery for NARROW ANGLES, dry eyes and now blepharitis. I never EVER had dry eyes until this surgery to save me from another problem. SO only part of the out of state Sjogren's test came back. So do I have primary or secondary SJogren's? Primary is quite rare and most all times there's another autoimmune illness going on so I wait. My ANS doc emailed me blood work results and phone number and two rheumy's to choose from. One man and woman. Sadly I got the female as she's easier to see (3 weeks) but is Indian but I am assured not a THICK ACCENT. So now we go starting over again although this office HAS my recent blood work already due to in same extended health group. Normal ssDNA test is 0-19. Mine is 219. So for sure Sjogren's. BUT..could this mean I also have LUPUS as it's rare to have "Normal" ANA & SED rate for Sjogren's...but we dysautonomiacs ain't normal. I realize few post on this topic but i have much joint pain and RA ruled out over the years...so osteo arthritis we guess or some non specific ritis. I'm TICKED the rest of the blood work never came in but my doc has no control over this....we already had to redraw one test as it got shipped THAWED & needed to be frozen. Except for gravity issues not being address. Sjogren's alone has MANY symptoms I have..add Lupus and it's a big Bingo (except for the gravity thing) How many here have had normal pre screening tests for auto immune junk ONLy to find out you did indeed have such an illness. My ANS Dr has been pretty repetitive at screening for this over the last 13 years and checks my thyroid a lot for Hashimotos and other stuff (all NORMAL) even tho my thyroid often enlarges and then gets smaller again..we even did an ultrasound a couple years ago...normal. Between recent eye issues,my surgery was not successful so they want to do iridoplasty Narrow Angles and Plateau iris (rare combo, surprise!!) Ive had it with waiting. they fry your eye like bacon in plasty and NO guarantee except it's VERY PAINFUL and 98% get iritis afteward. No thanks. thanks Soph
  4. depends on the med. yes some lose potency but depends on many things so mileage may very. Temp/humidity etc. Is it hormones or meds that weaken as Nina mentioned, or stuff that goes bad? Me i've used stuff way beyong the one year date as most things on shelf have longer life. They do this to cover their rears. Also in my house I keep things in a drawer or a hormone like DDAVP in hall closet that stays consistent in temp year round. A bathroom is the worst place to keep meds due to heat/humidity. but again it depends on many factors. I'm just sharing not saying what to do in individual cases. But I have no script coverage and have used things long past what bottle from pharmacy says with blessing of my doc. Other things, no. Just ask a pharmacist you trust that has your $$ at heart, too. Hope this helps more than confuses.
  5. Wow. Have problems STANDING still and movement like in cars and can't do boats or even a floating restaurant (mild vertigo or dizzieness issues) A segway would never work for me. I know HEALTHY people who found them awkward for balance as you need to shift your weight on them in order to CONTROL them. Otherwise the Segway tips over and you need to JUMP off! Would never work for me. A guy I follow on Twitter had a video of he and his wife trying them out last year on city street. Not easy. Some local police use them in urban areas. I do better walking fast between A & B but I better have a seat or better yet, recliner or bed when I get to point B. Walking too slow is as bad as standing for me. Walking fast pushes the blood back up towards the upper body. Standing still for more than a few minutes (NECESSARY for a Segway) saps my energy. Some days quicker than others.
  6. WOW, sorry for the situation you are in . "Medical malpractice" for treating POTS?=LAME. More likely there is not a lot of money in it and takes a lot of the doctor's time with pts so the rest of the group was not happy. STINKS for you....hope you can get somebody else to help you out.
  7. I had something similar years ago. Had very VERY painful periods and the cramps turned into intense pain each month...soon starting before the period and I would have to miss work and take pain meds. Then the pain meds no longer worked. Then wearing tampons hurt....it would feel like somebody was grabbing me inside with pliers and yanking in some rhytmnic torture. I remember giving some details at one point to my sister (who had had four children) what I described sounded like labor pains. Well, after one clueless gyne missed it, & suggested a hysterectomy...I got another opinion. A wise doctor who thought I had something wrong with my pudendal nerve I think it was. after he listened to my give details of the pain. He was able to make it hurt a upon examination. AFTER they scraped me off the ceiling he said he could do laser surgery to fix the problem. Thankfully it DID!! And I just went back to normal painful menstrual cramps afterword. Not sure that is what you are having but it took three doctors to "understand" what my pain source was!! I could NEVER find this problem in books in the day (this was late 80s) and when I googled it a few years ago, nothing on the net. Good luck getting this fixed.
  8. xoxo to you !! Give us an update when you can....
  9. Rachel THANK YOU! Yes, that fixed it. Whew. Glad I asked
  10. When I try to read a post here the initial one shows up but the responses are ALL ON SEPARATE lines??? What's the deal. When did this change. I am having reading problems and also wanted to ask about blood work (waiting for final results) but am LOST ON THIS SITE. I have changed no settings. please advise. thanks p.s. Seems to be Firefox quirk? In Opera (which I hate due to ads) things look ok. Also using xp. But this is odd. I have line of text with responses listed. weird. Looks like this????????????? - alicia Your Husbands Response Today, 10:12 AM - - firewatcher Alicia, I suffered in silence for many years. It ... Today, 10:29 AM - - DelphicDragon I'm not married, but I'm going to comment ... Today, 10:30 AM - - mvdula My DH is definitely like that....I guess he feels ... Today, 10:35 AM - - potsgirl I have the opposite issue. My boyfriend is very co... Today, 10:44 AM - - alicia Most of the time I try to act normal. My DH def... Today, 11:02 AM - - thankful I'm pretty fortunate because my hubby is happy... Today, 11:23 AM - - thankful QUOTE (alicia @ Apr 9 2010, 09:02 AM) Mos...
  11. wow. Just saw this post. Hugs and thoughts for speedy recovery. Didn't know those airbags had smoke in them. Sheesh..they really are like bombs in the car...glad you could at least post an update.
  12. I'm the same way about long lasting meds..if you have reaction feel like &^%^ for 24 hrs. Just remember don't take bb or anything else for 24 hrs before this blood test..I forget what all meds can affect it but you want it to be as accurate as possible. You can find out what not to take. I would search for you but my eyes are really bothering me lately. Good luck
  13. It helps to confirm POTS if the norepi levels either double or triple I forget..had this done 9 years ago. BUT IT's VERY IMPORTANT to have it done PROPERLY. I was taken to a QUIET hospital room, alone, no tv, no radio, no phone, I had her CLOSE the door. But I had to tell the nurse "NO I do not want tv on , no lights, no open drapes, no talking...no stimulation at all, ok? Lie quietly 15-30 minutes. Have blood drawn. Then stand up and have blood drawn again at 10 or 15 minutes . My phlebot was so good I NEVER felt the second stick (pain can affect test to small degree!) and she'd never drawn blood from standing pt! lol just blood test and medicare covered it..just make sure you can lie QUIETLY before the first test Sometimes there are meds to help or beta blockers..but I am too sensitive to those but DO sometimes take 10 mg propranalol as needed. NEVER would I do the 1 pill for 24 hours..too many side effects. Take as needed
  14. How OFTEN one is reviewed with SSD depends on the INITIAL dx and reason for getting disability. Mine was for CFS (and of course a depression disorder which I only found out about 10 years ago) there is a code the put under your name and those numbers can TELL you their code..but I only know that from the Disinissues group. Certain likely to improve reviews are like 1-3 years other 3-5 years or it's 3 yrs and 5 yrs (I have memory issues and after all these years just take it a day at a time) MOST IMPORTANT THING, have a good doc and or therapist to see if need be. DOCUMENT your daily limits "not the name of your illness". That's the key. The packet I got 5 years ago with the numerous pages, detailed questions was something people only sometimes get. The little 4 page thing where you pencil in the answers in the blocks is sometimes enough or gets you a little paperwork. I would not wish the detailed TWO documents sent to me in yellow 8x10 envelopes on anybody. sorry I can't remember the specificities of the details but they will not just forget about you after a certain age...they are just back logged in paperwork that can delay stuff for months or years. I experienced that also but thats not worth going into and I will not revisit that time anyway.
  15. I get reviewed about every 5 years. You often have to fill out lots of paperwork and see a shrink if you aren't seeing your own therapist. And your doctor has to fill out lots of paperwork. The last review I had to do two huge packets of documents going over every nuance of my life asking how my life had changed. It was MOST depressing but it's what they do and need to do to rule out the fakes. But it was the most paperwork with detailed questions I had seen and I had to call them and ask them if I could have extra time. They said yes.
  16. if you are LOW on the ADH hormone aka anti diuretic hormone=DDAVP, you could drink and eat salt by the boat loads. Won't help squat. DDAVP can be quality of life fixer for those of us who need it and know how to use it. it helps us to concentrate urine. I would and still can push out clear urine at times. I dont put out a gallon of urine like some do (THAT NEEDS INVESTIGATING!!) I could lose 8lbs urinating a day some times. I Still am cotton mouthed and use lots of chapstick but helped by DDAVP immensely, as needed. My autonomic/endocrinologist says water deprivation test too risky and he would never trust it to be done correctly (He can't do it himself by staying with me 24/7) In my case we tried the DDAVP when I came across an article on it 8 or so years ago. Samples he had helped IMMENSELY with many issues.
  17. p.s. one supplement that CAUSES INSOMNIA is CoQ10. It helps with fatigue but . . . *sigh* I did many studies on this supplement after being found deficient in it in blood work. Anything over 30 mg can disrupt sleep even if taken early in the AM on a healthy person. So ..it's maddening. oh and exercise even early in the day can make my insomnia worse but I still try to do it a couple times a week for bones and stuff. If you have TRUE insomnia/circadian rhythms are OFF, No normal sleep hygiene rules in the world will fix it!!!! Normal 'insomnia' may be helped. Been there, done that, confounded sleep experts. Find your OWN WAY to help you sleep. Melatonin at low doses can help but also make you wake up at 4am and cause nightmares....another Catch-22.
  18. Insomnia, on top of unrelenting fatigue/tachycardia, was my most disabling symptom when I was still working in 1990. Still there. ONLY CONTROLLABLE to some degree with Klonopin. Been studied by sleep specialists, did sleep/drug govenmt studies. ...is much a part of POTS, Postural changes trigger the adrenalin. Add to that I have alpha-delta disorder and get little REFRESHING sleep. Hope you find ways to cope. One does eventually.My longest time awake with no NAPS or anything was 36 hrs, in early 90's. I used to see MANY sunrises. Thanks to Klonopin for 18 years (ONLY @bedtime... .5 mg usually does it but sometimes entire 1mg) things improved but still can't BE asleep when i want. It was always worse with PMS insomnia, too. No sleep on top of Chronic fatigue= insanity. Do whatever it takes to get rest. What helps me is falling asleep to benign tv show on dvd (Horrible depressing commercials can ambush you while watching the most benign show) This also helps to mask my roating tinnitus (ringing of the ears) Good luck to you. p.s. Currently on season 4 of Gilmore Girls for the second time in a year. LOVED that show.
  19. Futurehope YES! Allodynia..that goes along with Fibromyalgia which is what I chalk my hat pain up to...years ago FATIGUE was always number 1 issue..in last 8-10 years pain has stepped up (we know I have sleep disorder alpha intrusion but that's another story) but yea, I miss wearing hats for hours and on bad days cant wear ANYTHING either. Also years ago I had a HEAVY terry cloth robe I finally could not wear as it hurt my neck and shoulders. It was floor length and weighed about 5 lbs. I finally just pitched it...was a pretty dark green but also major cat hair collector so . . .
  20. I've had POTS 20 years (called it Chronic mono or CFS in early years) but it's worsened in last 8 years or so. I used to wear a certain hat of mine all the time if I wanted to for hours at a time. Now it can bother me so I take it off in the car and use while in stores (GREAT for bad hair days ) but I also can't keep pony tails when hair was longer in summer. My "roots/scalp" seem to hurt and or get headache. There's a word for normal touch causing pain but the name escapes me as I am multitasking. I can sometimes wear baseball type caps but have to make sure they are lightweight and loose as possible. Anyway, don't feel like the Lone Ranger.
  21. Please don't feel bad and I've read MANY stories that ablations has WORSENED POTS anyway...hang in there. Many of us NEVER find the cause like tearose said..you just have to move on from where you are at, sometimes.
  22. I've had similar pain for years...I have no EDS but have fibro...sitting up has been huge issue for me due to OI and the coat hanger pain is always there when upright too long. Midodrine can trigger this or worsen this as that med wears off. I spend most of my days everyday reclined or lying flat in between trying to be upright. Host of reasons for this but I hope you determine yours & get relief, kiddo.
  23. ditto Earth Mother. You save me lots of writing. especially on the 'creative part'. if you are married or in relationships, creativity is needed to keep all happy & healthy imo. There is always 'a way to get things done' !! w/o causing a flare. The end.
  24. Congratulations on your baby and getting through the C section.
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