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Everything posted by jenglynn

  1. Interview went great- it was much more focused on our blended family dynamic ( how often is your hubby's ex-wife your best friend) but we make it work- initially for the kids and it was important that none of them- there are EIGHT!-feel less important than anyone else, I'm fortunate enough to be blessed with a wonderful woman who just happened to be married the first time. I always say they were two kind, living, loyal people just. It right for each other- probably knew it all along- but both too kind to say a word before "I Do". Anyway, I did get to bring up some general symptoms, explain
  2. About 4 weeks ago I saw a new local doctor who was supposed to have dysautomia experience Abd specifically with autoimmune autonomic dysfunction neuropathy, FINALLY. Little things started to bother me. I called after I fell and had a horrible frontal lobe concussion that led to 78+ hours if n sleep Abd awful hallucinations. Didn't want to see me- fine- help me sleep! I've had double vision severely in the last 2-3 weeks- I have had it before- but it's so bad I pick up my phone and see 2 phones or whatever I'm holding. Can't really read from a book for long. He said go to an eye dr- nit neuro
  3. Jan, I'd agree with your assessment exactly. I have a very aggressive Autoimune Defivpciebce and according to the doctors there basically no autonomic function- Technically, it's called Autoimmune Mediated Autonomuic Dtsfunction Neuropathy. A lot of other more "minor" DX (in their opinion !!!!!) we're made. Ipthey discovered a Connective Tissue Disorder but wouldn't test it because in their minds it is impossible for any connective tissue issues be related to Autonomic Neuropathy and mine is autoimmune- that's that. Finally, I insisted, and I do have EDS Abd said I have Fibromyalgia. Not s
  4. Hi everyone, Our whole family is being interviewed for an interview (like a 30 min segment) and most of it is about a family. Our two blended families (me and my hubby's family) and the other side (his X-wife and new hubby) have decided to raise ALL kids on one family. We really love them equally and we are together so much it didn't make sense any other way. So my hubby and ex-wife have 2 together, I have 4 w/ my ex husband and Ex-Wife and new hubby have two year old twins. 8 all together. This is always quite gossipy to people and fascinates people but we started it as a way for the kids to
  5. I have been admitted numerous times but typically due to head trauma after a syncope spell. Hope you get the answers you want!!! Jen
  6. Right now I'm at 15 mg and next week I think, I move up to 20 mg 3x a day. I started about 8 months ago 2.5 and just very gradually increased. I get the side effects like chills, goosebumps, always feeling cold. My scalp itches... They can always make me a but jittery and anxious as well. I didn't get side effects until 5mg and there are many others that I dont get that I didn't mention, I take mine 3-4x a day because the effects don't last long with me. 2-3 hours max (closer to 2). It hasn't been a "cure" for my symptoms by any standards... But I can sit up longer and it does keep my bl
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  8. Thank you all! My doctor is sure this is the way to go to calm my aggressive autoimmune disease down... But what if it doesn't? It had me in complete rejection of IVIG in 4 doses.... I've had many, many people tell me this is a wonder drug and lots of others tell me it was their worst nightmare. My illness is so rare or the combo (autonomic dysfunction neuropathy, autoimmune disease of unknown origin meaning they've never seen or heard of it before- but it destroyed my bidy's thermostat at some point so I never get fevers- and as quickly as my body was in rejection of the IVIG (which for imm
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  10. I've taken Midodrine since Oct. I take 15mg 3-4x a day (depending if I'm an early riser). I started at 2.5 and getting ready to be switched to 20 mg at the beginning of May. I get a LOT of side effects- in fact just about all of them. Feel freezing, colds tingly- tingly all over- especially my scalp.im very used to these Abd don't bother like they used to. I've always of of "THOSE" dreaded people to work who are wrapped up (not currently working). I didn't really notice the cold until about 5mg-and them much stronger at 10m and no real change going up to 15mg. As far as my BP it increases-
  11. Well, up until April 28th I would say "NO!" but my sister, brother and other family and MANY friends started planning this and I just found out a few weeks ago. Our area does a lot of this sort of thing, so it's not unusual but I just feel awkward, embarrassed and a little uncomfortable. I am VERY humbled, grateful and overwhelmed at the interest and people who are willing to help. People from so many "segments" of my life: family, church, work, prior work, hospital, hockey parents (boys play hockey), all the schools (we have kids in elem, middle school and high school) I teach a Marriage En
  12. Oh this is perfect timing for a question like this!!!! I'm on Long Term Disability and had to apply for SSI. I knew it would happen sooner or later, but after not working since Sept. my employer fired me due to inability to work. Like I said: expected. I guess I didn't REALLY think it through- how much would change. I'm now on Badgercare (Medicaid for Wisconsin) and not only did I have to cancel all my Mayo appts, and testing... I have to find new doctors for many specialists that I see. It took MONTHS to get all the pre-auths done for Mayo now I start over???? On the the point- four of my
  13. Kimbellgirl or any others who felt this way, How "long" we're you the Energizer Bunny before you crashed? Months, years? Jen
  14. Hi All, Just saw a new neurologist and he wants me to start a 2.week dose starting in 2 days. I've read lots of reviews- most say that it "works" but the side effects are so awful they aren't worth the benefit of it. I've taken a lot of bad drugs over the last year so at this point I'm willing to try something that even gives me a chance to get better. So if anyone has tried it or had loved ones try it, if you could share experiences I'd be so grateful! I don't care- good, bad or ugly! I've read the online reviews which are terribly negative in general and I get that and I know what steroids d
  15. Oh communication. It always comes back to that, doesn't it? In ANY relationship? Rob (my hubby) and I have only been married 5 years- blended family- I have 4 kids (with us full time) and he has 2 (50/50). I've tried to express gratitude to him and he will say 'You are welcome but don't thank me for doing my job! Sickness and health, remember???" 90% of the time he is like this. The other 10% is an utter nightmare. He has tantrums. He is mad at me for everything I do. Nothing I do is right. I sit up too long. I crawl wrong. I don't eat enough. You name it. He will tell me that I have no idea
  16. That's what I was wondering too, Issie. The doctor told me that I had such a bad case of appendicitis even though it didn't "rupture" it was inflamed for a long time-and all of those antibiotics kept it at bay. When I got out of surgery, I remember the doctor saying that I was still very sick with a serious infection and I had some of the "whatever is in the appendix" leak out because my appendix had an apendicolith which is a calcium deposit on the appendix- just as they were trying to get to my appendix the appendicolith started to split and the "stuff" started to leak. I had lots of adhesi
  17. Sue- interesting!!!! In late Oct. 2010 I felt pain in my side and thought I might have appendicitis. I don't know about everyone, but my appendix pain was just- different- than any pain I had ever had. Not the worst- just different. When I got checked I had no fever(well since have learned that my "thermostat" is broken so I NEVER get fevers- EVER- but I had a bladder infection. It was decided that was the. Ause of pain- given strong antibiotics and sent home. 3 weeks later- same symptoms come back. This time they did a CT but the ER doc didn't anything but I had another ( or the same bladder
  18. Thanks Ladies!!! I "guess" I'm willing to try the suit but I'd NEVER heard of it. It just seems a little... I don't know... Much??? Do you wear it all the time??? I guess after this long and being this sick - anything is worth a try. I looked up Predisone online and it seems as if people loved it or hated it- or it did work but the side effects were really hard to live with. I'm taking my first dose today. We shall see!!!!! I'm nervous about it. I saw one very rare side effect bring "extreme sense of euphoria, well being and happiness" I am praying for that one!!! I am a strong person and su
  19. Ugh! I HATE mine! When I have to be out for a while in my wheelchair I will wear them.. But they make me so uncomfortable. And the strength that Mayo wants me to wear is just too much. REALLY strong knee highs (like 2nd from the highest) and then black leggings over those one grade down from my knee highs and an abdominal binder on top of that. No fun! Jen
  20. I posted a few weeks back that I was "terminated" from work.... Well originally they told me they'd keep on our Health Plan for 6 months- that was very generous I thought- but because my employer ( the insurance Health plan is also the same as the hospital it can get tricky). We've had 3 different serious medical errors and they have been afraid of a lawsuit (which I've never threatened... I can't imagine suing them - especially as my employer)- long story short I didn't get the extra 6 months of coverage in writing and I just got our COCCs which give a term date of 3/31/12. So, verbally, they
  21. I never thought of Adderall as having possible effects on our adrenals... What symptoms do you notice? I take Addreall and have for about 9 months. It is one of the few (taken in combo with an SSRI) medications- along with Midodrine (off and on- I always take it but we seem to have a love/hate thing going-.sometimes it works greats- although other times nitvatvalk). I have lots of syncope and multiple concussions and I think it helps so much (Adderall) with my concentration and focusing, I get no SIDE effects either, not even energy. No loss of appetite, jittery, insomnia, guess I'm lucky. Y
  22. Sue- I'm so sorry. I had a TTT at Mayo but honestly can't remember the position of my arms. One thing I have learned at "Certain Large Medical Facility" who specializes in autonomic issues- and this is MY experience only and for those of you who have had better experiences, I am so grateful- is that they seem to have tunnel vision, they dont like to look at the big picture! Each specialist you see concentrates only on their specialty. Looking at our bodies from that mindset can be dangerous. And Chaos- I could not agree more with you about the adrenaline!!!! She, maybe your hormones were
  23. I wonder how this method works for some, like Lemons, yet not others- like me. After almost a year in this flare I decided about 2 months ago-. That is IT! I'm standing, walking, living "normally" until I DO faint. I've been exercising all along- leg strengthening with weights in bed, arm exercising with resistance bands, and supervised recumbent bike every day- plus home PT 3 x a week. The doctors are always very shocked at the good shape and tone of my muscles-considering I had been bedbound since Nov. OMG- before I start my rant- LEMONS- I have to preface and say this is NO way personal
  24. My biggest concern is not so much whether I will grow old or not because who knows??? Seems like diagnosis list is a mile long and no one can figure out how to treat me so I just don't think about it too much. I really worry about my brain function. I've had a total of 10 concussions in my lifetime. I'm 38. Of the 10, 5 were "severe" with head trauma. 7 of the last 10 occurred in the last year. At this point, who knows how many I have had, I still have syncope daily and I don't always know if I've hit my head. So I know of 10 for certain. That is my biggest concern. I already showed some co
  25. Both of my pupils are almost always fully dilated.... But my left is about 25% larger than my right I'm told. It seems as if every time it's looked at, it is bigger on the left, so I'm not sure if mine is related to sensory overload or if it always enlarged. I do know that my left communicating posterior artery in my brain in diminutive for whatever reason- a common sign of people who have a small artery on either side of the brain often have a larger pupil on that side as well. Jen
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