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Everything posted by mjan

  1. Dana, I agree with you about your question about why you'd stay on your BB when you are having the test. I had a TT done which was not done by an autonomic doc but still told me it was "positive" and lead to my BB. When I was referred to the Autonomic neuro he ordered the whole autonomic testing and I had to be off my BB for 3 days I think it was.. that bothered me..but I did it. Of course I failed the TT but.. my BP did skyrocket as it always does before it drops suddenly. Maybe you could call and ask for the doctors RN.. is that who you spoke with? Or just the scheduler?? Let us know..good luck Jan
  2. So sorry you are struggling with this..its scary sometimes. I used to have it ALL the time I would try and eat..wave my hand and my husband would bring me water. Then I learned to drink fluids WhILE eating and that helped. BUt after I started to wake up at night and in a panic could NOT swallow at all.. I saw a doctor again. I had a GI doc and he did an hmm..cannot think of the name..but its when they put a tube down your throat with a camera. You are sedated..YEAH. Turns out I did not have GERD OR hernia..but he needed to stretch my esophagus..and since then I have not had a problems. Confusing eh? OH.. after the test..I did have problems for about 2 weeks as the esophagus was healing..but it was NOT painful and helped alot. Good luck..but if you are choking on saliva..see a doc Let us know..k? Warmly, Jan
  3. Hey there my dear...your post caught MY eye too ~! I remember the many many years and problems of PERI-menapause..yuck!! I had over 10 years of PERI-menapause. I didn't know I had Dysautonomia then either..or other kinds of things wrong. Get this.. I just had some steriod injections in my back..and..WOW the side effects INCLUDING BLEEDING again at 60!! Now I have to have tests..biopsies for Uterine CANCER.. oh no they didnt!!! I dont have children your kids are at..but more like 7 grandchildren. I cannot be that ACTIVE grandma like others. My darlings seem to just accept me..but still..they ask. But sweetie.. I will be your friend..your internet "mommy"..whatever YOU need k? You can PM me.. and we'll see what you need and know this.. I can and WILL support you.
  4. WOWEEE FOUND SUZY!!! ANd hello to all ...like Broken shell.. I am not on here as much. BUT I was so happy to SEE you on here Ms Suzy-Q~!! Glad you are coping better. How did you find out about the drug metabolizing problem? What are you doing differently to be well? I have so much to share too. Know what you mean when there is a "name" to the monster!! I even have docs who see my history and have to look up the name of some it it..THEY have never heard of this and another problem diagnose. Miss talking to you Suzy WRITE when you can..PM..Email k? Warmly with HUGS..Jan
  5. Glad you brought up this topic. Although my tests did not prove positive for Sjogren's my first Rheumie said I just have had too many symptoms for too long so she made it a "differential dx" and started me on Methotrexate which is taken 1 time a week with folic acid and OH.. I forget the 2nd one but it begins with a P and it has to be checked by a neuro ophlamologist in case it starts to damage your eyes. Oh its called Plaquenil if I got the spelling right. One of my ENT guys said he could do the lip biopsy and yes its not conclusive in 40% of people. The biopsy confirms the DX. He helps me when my very dry ears get easily infected and I have had to have a stint placed with ear drops..easy tx actually. I take a pill generic is Philocarpine which I LOVE LOVE LOVE as it works immediately to give me saliva. There is a lovely Sjogren's forum which many have dual diagnoses or disorders. I take Restatsis for my eyes and now do not take the above named meds. I went to another Rheumie who would not dx me with Sjogren's even as a secondary dx and took me off the above named meds except Philocarpine. HOWEVER>>>When I got my Dysautonmia DX that neurologist named it as "SICCA SYNDROME". Obviously have had the symptoms way too long. Trust me you need to educate docs on this. THey may have "heard" of it but have no idea the extent and how being an autoimmune affects Dysautonomia. AND its a BIG MS MIMIC Good luck Warmly Jan
  6. Yes I have had IRITIS and man was it painful. I could not move my eyes and laid still hoping the eye drops would help. That was in 1993. Now that is my weaker eye and one Rheumatologist thought it was related to an autoimmune problem..but I cannot remember which one~!! LOL. I think it was Sjogrn's or Sicca Syndrome=dry eyes..mouth..etc. I have that too. Did you find anything else out? Any other connection? Good luck Warmly, Jan
  7. HUGS to you ~! I have had the whole MS work up and was monitored for 4 years before they finally ruled it out.. AND.. I do have lesions on the brain..not the typical shape that MS folks get. BUt whenever my symptoms were bad and got the oral prednisone it may a BIG difference as it helps with inflammation with exaggerated symptoms. You'll be ok...IV pred is just stronger. It can make some hyper and sleep less but man does it help Good luck..can you write us in the hospital? Some have IV labs in their clinics and can avoid the hospital. But they may want to just monitor how you're doing. Keep us informed.. Warmly, Jan
  8. Good luck with your 2nd opinion. Just wondering if they will offer you a 3 day 24 hour video EEG which can be done in your home or hospital. It tells them more AND they can SEE them not just the EEG. Is this neurologist a specialist with epilsepsy? Wouldn't both POTS doc and the seizure doc consult with one another? best to you..Warmly Jan
  9. Have the exact thing except the ANA. Rheumies want to DX and treat with meds. All/MOST docs treat with meds..its what they know. A lot of extra pain is from toxicity..in our systems. Think of doing a safe..natural detox of liver then colon found in health food stores. Its NOT running to the bathroom but gets the pipes cleaned out = more energy and less pain. Try it. Just know that meds in themselves makes us toxic with side effects et al. AND..we need to build UP our brains/systems with safe non toxic NUTRIENTS!!! You'd be surprised how everything works better with less toxicity in our bodies. I know this subject well.. my husband died from medication toxicity...sad. Good luck with all you are going through. I hope you get answers. SORRY you are struggling so....know it well Warmly Jan
  10. Dr Oz who has this new show and used to be on OPRAH.. says we need 1000 mg of Vitamin D..and that is for folks NOT with any autoimmune or other disorders.. Anyone take that?? Jan
  11. HUGE but GENTLE HUGS for YOU and YOURS!!! Gosh your mom HAS to have this surgery? Of course she and you will continue to be in my thoughts and prayers. No wonder you are scared.. for her and for YOU!! Do you know or believe in the Serenity prayer? I will say that for you (as well as for me). IT keeps me grounded when on a humal level when I do not understand I ASK FOR GUIDANCE and I am OPEN to recieve..esp when scared. Picure all of us..sitting nearby..with sweet understanding smiles..with arms to hug you when you need it.. or arms to hold you up ..to fetch things you need.. to help you and comfort you. With this vision may you be surrounded by loving..caring..guidance that WILL get you through all of this. Warmly, Jan
  12. HUGS to you and yours my dear!!! First of all you have not completed the divorce yet right? You live in Wisconsin a no fault divorce state. Its the primliminary/custody and getting one of the partners out of the house hearing right? Sounds like it. There is mediation whenever children are involved. Then custody stuff is a battle in FAMILY court. So... you have NOT lost. Its temporary to get someone out of the house and you two separated..right?? As horrible and shocking as this has been..its not over. AND it will COST YOUR SOON TO BE EX lots of monies to take YOU to court for all these so called substantiated evidence. WE will all continue to support you through this ok my dear?? Its TAKES evaluations.. psych evaluations..guardian ad litums (attorneys for the children) and lots of TIME AND MONEY to prove you cannot care for your children. Think of this the best way you can.. its ONLY a piece of the puzzle in the BIG PICTURE of you NEW life without this uncaring so and so of a husband. EMAIL me.. or PM me.. I too will be on YOUR side through this all!!!!! Warmly, Jan
  13. OMG...HUGS to you and yours my dear Maxine!!!! Your dang PCP...what a doof!! OF course he does not know what to do..but still.. where's the so called bedside manner. I know you are so scared.. worried. Easy for any of us to tell you what to do. All I know is that YOU deserve a miracle How involved will your new neurologist be? I mean could he be called when you have an ER visit or a crisis question? I hear how scared and worried you are..but dang..what a GREAT grandma you are to care so much about those little ones!!! PRAYERS...BELIEF.. there IS an answer out there for you...And I hope your brother takes your concerns about his son seriously. Warmly Jan
  14. HUGS to you my dear!! WOW.. you have a strong constitution !! OF course you do. Doesn't mean its fun or hard to accept help from other..so many lessons. At least he is showing his true colors until the end.. and then some. TRY real hard to jus stay with today.. this moment.. to get through each and every day. Worrying about the near future.. is your grieving..I understand. BUT you can CLAIM that this WILL BE your best holidays.. IF you think it.. it will be your reality !! Of course in grieving there is the sad moments.. mad moments.. ups and downs until you get to acceptance mind/body/soul. I am divorced..it went totally against me... then finally remarried and it was so rocky due to HIS disease and my undiagnosed self. BUt..I FOUND ME.. grew spiritually and went THROUGH my sad angry moments to get to an amazing spiritual place in my life. We're here for you.. anytime.. you can email me too. I mean it. Hope you continue your healing.. Warmly Jan
  15. WELL...HUGS to you my dear!!! Aren't you sweet to wonder about all of us on this forum when YOU have been missed!! Remember you can email me. I am on this puter x 2 at least every day .. I would've been there for you. Anything helping your problems? Bleeding??? What IS going on with my girl??? Warmly Jan
  16. Sorry for what you are struggling with and loss of your cousin. Are you sure your cousin and Aunt had Dysautonomia?? It could be seizures as well. There are several kinds of seizures and one is where you just suddenly fall over or Drop seizures. But have hope..and know you have our support !! Warmly, Jan
  17. Welll you go girl ~! YIPPEEE!!!! YOUR miracle is starting to enfold...BELIEVE..TRUST...AND SEE HELP IS ON THE WAY!! Keep us informed. Jan
  18. {{{ HUGS TO YOU AND KRISTIN }}}} Gosh I think YOU are amazing and hope you take all our support for yourself as well. All I want to add it be careful of Keppra. Neuro docs love this stuff but it can cause more problems than its worth. They are making educated guesses at Kristin's expense. I have found more help here than in all the years of docs and tests. Mostly they rule things out but are limited not only in evaluating but in prescribing. Docs like to know there is an RX to offer. DIET and chemicals in food and drinks are adding to already messed up neurological system. Even so called healthy foods have hormones/chemicals added. I see a specialized Nutritionist who has the most amazing evaluation tool It picks up what you are lacking or toxic from.. it assists with side effects from meds. It kept me going for a long time. Once I am done getting all my evals done this year I will go back. All my neuros were amazed at the improvement this guy was able to offer me. I used to have autonomic seizures but they stopped. Best to you and poor Kristin. Does she want to come on to this forum too? Again.. I am so proud of you. Make sure to take time for yourself as well. Warmly Jan
  19. Thanks for responding. So how was she when you heard from her?? Oh how I worry bout her... And how are YOU doing? Warmly, Jan
  20. For the life of me I cannot remember Suzy's user name. Does anyone remember her user name? I wish I knew how she is doing? Let me know Jan
  21. {{{{ HUGS }}}} Gosh what a struggle..glad you are getting some help with the pacemaker and no more gallbladder problems. How are you coping emotionally?? I miss you... Warmly, Jan
  22. OK..now I am mad FOR you!!!! What is with that nurse? I work with RNs who are suspicious of those who use alternative supplements etc. THEIR drugs work.. yes..but can be harsh. I have one idea. If you look up a chiropractor..don't get scared now.. but one that uses B.E.S.T. method. Its using a finger along the nerve paths and with a counter point on your nerve pathway they UNBLOCK where nerves are pinched.. they do NOT manipulate your vertebrae. They would listen at least and be honest with you about what they can and cannot do. I had one who saved my life..just prior to neurosurgery and he saved my life and career. I was totally disabled..could no longer walk nor sit. It was chronic.. 20 years and this neurosurgeon was going to try and do surgery but thank God he thought he would start a condition that would only make me worse .. I was in my mid 30s so he did not want to contribute to ruining my spine. I have to thank him to this day as I was already in the hospital and learned he would not do the surgery. Of course when you are in pain you want to be OUT of pain. But that PAIN is what lead me SPIRITUALLY to seek out this specialized chiropractor. Anway.. its a thought. I am SOOO lucky. I switched job and had to start ALL over with all new docs..and each and every one LISTENS.. respects MY theories and opinions AND even got ONLINE with me to check out this web site to help Diagnos this rare condition!!!!! Can you believe that? HUGS.. gentle...but hugs my dear Maxine Warmly..Jan
  23. OK.. I promise I will read ALL the responses..but first I gotta say..I AM SO ANGRY for what you went through. !!!!! WHAT IDIOTS !!!!! Not to EVEN BELIEVE YOU!!!! All I can say is that you held your own. Proud of you for that!! Why didn't your hubby go with you.. being a MAN and all..he could have witnessed to them ALL you have been through. YOU my dear Maxine have my undying support!! Warmly, Jan
  24. YEAAAAAAAAAAAAAAAAAHHHHHHHH WOWEEEEEEEEE !!!!!!! Now its time to celebrate..yes? Expect a miracle !! Jan
  25. NOPE not getting it. I stopped getting flu shots. I am basically healthy even tho I do have an autoimmune disease. I see this amazing nutritionist who warned against gettng the regular flu shot. Call me a skeptic..but getting "detoxed" from mercury more than one time (along with my 2 baby grandsons) MY belief is that its a hoax to make money for pharmaceuticals. They put a scare in us.. warn us its coming when the FLU comes every year and more die from it WITH the flu shot. Sorry for those of you that believe in these shots. AS I said.. I see my nutritionist.. he has a very safe whole food nutrient for building up one's immune system It works for me.. and keeps me going. Good luck with this stuff. Jan
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