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jenglynn

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Everything posted by jenglynn

  1. I am where you all are. I have so many issues that seem to connect but not sure if they do. Even my providers at major centers can define me as anything but a "medical enigma." I laugh about that because it's actually says that in my discharge papers- lists all my DX and here is a long list- and state I'm a medical enigma. Like "We have NO idea what to do Ith you." but at least they aren't giving up. Maybe there is no ONE answer for me- just a perfect storm of genetic diseases and a very aggressive Autoimune Disease. I would really love to know what is casing all of this but so far it's a mys
  2. My balance issues have always been horrible. I once had an assessment done and was told the same exact term, ironically nough, a couple years ago (before I knew I had any autonomic, autoimmune, EDS or anything) that I had the balance of a 90 year old and I should not be walking without a cane. Well, I knew my balance was bad but I wasn't using a cane in my 30's unless I had no choice. It's the same whenever I do those neurological tests.... Touch your finger to your nose.. Eyes open then closed. I can barely do it with my eyes open and usually miss but with my eyes closed I usually hit my for
  3. Oh Peace- Sounds like we have much in common. There are so many things I just cannot do- guilt. Things that they do that just physiologically drive me crazy may be normal kid things but I can't tolerate- I have to ask them to stop or isolate myself (and I have to spend so much time in bed as it is) - GUILT. The things they've witnessed- fainting, bleeding, my rapid decline- guilt. Missing activities- guilt. As juju know- list is endless. I love them so much and my husband and at times it seems as if I'm more of a burden than a wife or Mommy. I know that sounds like whining and melodramatic b
  4. Peace- Our two boys- 11 and 13- are very sporty and they are always bouncing balls or tossing thing, jumping, floor hockey- these things drive me abolutely crazy, they ALWAYS have but in this flare it is so much worse. I usually just tell them to go outside but we live in Wisconsin so sometimes in winter (although not this one) that does not always work. I have a hard time with this- I struggle between my patience/tolerance level and Mommy Guilt. It's bad enough to have me for a Mom- so disabled right now I can't do any of the things they are used to me doing... And thinking "Okay, is this a
  5. I do not remember the name of mine- but it's the one that works with my iPhone. It has a cuff (arm) that plugs into the dock (which is also a charging station for my phone which works great) I like it and it is pretty accurate but when I'm standing it almost never reads it (but my standing is pretty low- 40/25 usually) sometimes even the hospital ones don't get it. The home models are more designed for people with high BP it seems. It tracks my numbers though- love that- so I can just show a doctor if they want to see what my BP has been. There is an app you download an your phone and then go
  6. Oh, and I'm surprised in a way but NOT surprised to hear about the results of that survey. 2/3 is such a huge number. My patience level and tolerance with doctors is so paper thin right now. I'm so tired of getting treated as if I am wasting their time. I called my neurologist last week about ANOTHER concussion (number11) at the major facility I go to and won't use names. It took him 4 days to finally call me back. I had gone through IVIg rejection in January. My labs were a mess. Every organ system was affected and my blood as well (hemoglobin, hematocrit, RBC, WBC, ferritin) They are al
  7. Hi PotsGirl, I had the same issue- very bad syncope- almost literally every time I stood up. I started at your your dose of 2.5 and currently take 15 mg 3x a day. I had lost a lot of weight since taking it also. I am 5'3 and weigh 104 pounds. I know that doesn't sound horribly underweight but I feel I look and feel best at 125-130. I'm pretty "curvy" I guess and really large chested which DO NOT get smaller as I lose weight, unfortunately!!!! When I first started getting this flare I was 145 so definitely overweight- but but fit and firm I think because I worked out a lot and it was mainly
  8. Interesting.... I am so home bound that it is rare I go anywhere- but we have 6 kids- so the noise level gets high- and I have a real problem with that and need to get away from it or they all need to tone it down fast. Well, this weekend my brother and sister are visiting and I decided I am getting OUT and doing something and everyone wanted to go to a hockey game (like kids out if high school before college level so not a huge stadium- they play at the same rink my boys play in). Everyone except my hubby and I went to the whole game but I know my max would be an hour... Because cant sit in m
  9. It seems like most of my emotions are dictated by POTS/ Autonomic Failure/ and meds needed for them. But to me, this is the chicken or the egg question? Not sure if the illness causes the emotions or vice versa???? Jen. P.S cognitive problems are more due to head traumas/ concussions from syncope vs. POTS
  10. Brenda, Good luck with your decision! I live in La Crosse WI but would easily go to Milwaukee to find a endo that will actually take me seriously. If you or anyone hears of one- please post!!!! The ones I've dealt with thus far act is if they have no idea about my thyroid and how it works with the autonomic system... It's almost as if they ALL specialize in diabetes... That's what every single one of their bios say- believe me, I'm grateful to NOT be diabetic but would be nice to at least be HEARD. Abnormal labs are abnormal labs, right? Dismissing it because I have an Autoimune Disease and
  11. GEEZ.... I was hoping to get answers but not responses saying that you are having the same issues :mellow: It is just awful. I know it seems trivial compared to everything else- but I feel unattractive enough as it is... and stuck in bed all the time- its just depressing. I am pretty sure that it is my thyroid but no one seems to want to investigate and I am growing weary of asking again and again but something just isn't right with this. I swear, I DO have a VERY VERY MEAN autoimmune disease and it doesn't play nice with me at ALL!!!!! It HATES ME! Will attack anything and everything. I
  12. Does autonomic issue cause hair loss or it is more likely thyroid or meds? I know, everyone loses hair every day- but it has gotten to where I don't want o wash it for fear of losing more! Just comes out in clumps!!! I've lost about 40-50 % of my hair! Luckily it was thick to begin with.... But this is really starting to bother me. Gee, I get to be bald too? I can't get ANY endos to listen. TSH is hyper- .08 I think or .05. T3 T4 fall in very 'hypo" normal range. All I hear is that my T3 and T4 are"fine" but very borderline but then something is up then if my TSH is off, right? they just s
  13. WELL, this is something I need to work on myself- so I'm not going to have wonderful words of wisdom. However, I TRY to always be positive around my kids. I guess I feel bad enough that they are having to suffer with a debilitated, bed-ridden mom and have all seen me faint in the hundreds of times I'm sure- and all have witnessed serious injuries. I try to keep things as normal as I can with them and I don't really know how I do it... It's like the Yoda quote: "Do or do not, there is no try." I just make sure that there is no there option for me and I do it. Not to say they have each not wit
  14. Interesting about the memory- yes that was one of my major cognitive losses- short term. Well I can't say it helped with the fainting LOL.... Because I fainted every time I was out of bed- but maybe I took too much like we already said. I'm going to go do some research on my own now. Thanks Issie!!! Jen
  15. Kim- you reminded me- another major sign for me is vision problems.... Gets blurrier and LOTS of double vision or like I am looking through a strange looking glass. Hard to explain- but just visually perceiving everything in very odd ways. Jen
  16. I haven't had my hair cut- and I'm a cut AND highlight kind of girl too- since the summer. My hair is a MESS. It looks horrible plus I've lost about 40% of my hair as well (I'm thinking thyroid issues no one can figure out) I've been debating about making an appt. bu I'm basically bed bound so was wondering if it would end in catastrophe. Sounds like quite a few of you get symptoms. Darn!!! I wonder if I can pay a stylist to come to my house?? Hmmm.
  17. I wonder..... It seems like I need such HIGH doses of anything before it even makes a dent in my symptoms. So strange- I am envious, all of you are all at such lower doses. My Midodrine is 20mg 3-4x a day, Valium 10mg 2x a day, Florinef is .2 mg, everything I take has zero effect until I am at mass doses even if its a drug I have never taken. I also take Paxil and Adderall- not sure of their usual Doses but I think I'm at 40 mg of Paxil and 60 mg of Adderall. And I have ZERO side effects and it makes me think they aren't working at all. Jen
  18. Live and learn! I keep trying to call my neurologist all day to find out what dose he wants me to take... still hasn't called me back. And I have an appt. with him this week... Thanks for your help!
  19. I guess it depends on the hospital.... My local hospital doesn't charge us personally for our records. They may charge insurance companies or SSI. I am not sure, but patients get them for free at our hospital. Jen
  20. Okay- so on Sat night if I took 500 mg that was a high dose and it could happen that fast. So I was really REALLY stupid!!!! Lol
  21. It did not cost me any money for my medical records but it cares by hospital. My sister is the manager of our Health Information Mnagement dept which includes medical records- so she just sent me a zip drive the other day so I have PDF lies of everything and CDs of all my radiology scans. It's not special treatment- anyone can request it that way But I e signed a release for her to have access so I get mine a little faster. I definitely recommend getting your own personal copy of ALL of your records. My sister goes a little overboard but. Have I have binders filled with paper copies that we
  22. Okay.... I tried Magnesium over the weekend like my neurologist asked as i stated above. Saturday I took it only in the evening and did the same yesterday. I just took 2 tablets on Sat. (he didn't give me any dosing instructions) but after Issie's warning yesterday about lowering my BP last night I took only 1 until I call him and find out: why am I taking this and how much. I don't know if it was a coincidence but I had 9 syncope spells yesterday. I told my husband it was Syncope Sunday lol. I haven't had that happen since Nov. when I was still walking. I still have 1-2 a day even while cr
  23. I am so sorry to read so many of us struggle with this I am in the middle of a rather extensive cognitive battery of tests- Sadly, it does show "cognitive dysfunction" ( I had testing done 3 years ago) and compared to then I've lost function in quite a few areas- some more significant than others. I guess the only "good" news is the neuro psych said I don't have any "impairment" (yet) so not being as highly functioning is definitely better than being impaired. My testing is due to my Post Concussion Disorder (have had 10- 5 of the 10 pretty severe) so I don't know what causes my dysfunction-
  24. That must have been scary, Heather!!!! My HR drops when my BP is high nd vice versa. After a high dose of Mestonin given to me st a hospital my BP got to like 200/140 (CRAZY high for me- normal without meds s like 70/55) and my HR was like 35 or 40- cant remember. I felt like I was going to die and my head hurt SO bad I thought for sure I had an aneurysm or was having a stroke- just the high BP- but it was terrifying for me. I had all of those symptoms you described- but I know mine was from the med. I don't think I've ever had it just happen. I know we all hate to hear this.. But MAYBE a c
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