Jump to content

jclair

Members
  • Posts

    23
  • Joined

  • Last visited

Contact Methods

  • Website URL
    http://

Country

  • Interests
    Current medications: Metoprolol 25mg 2x a day, Niferex 150 2x a day, Cymbalta 60 mg 1x a day, Florinef .1mg every other day, ranitidine 150mg 2x a day, Ambien 10 mg at night as needed. <br /><br />Diagnosis, Autonomic Dysfunction and POTS from Cleveland Clinic, (although i am not convinced).

Recent Profile Visitors

1,169 profile views

jclair's Achievements

Newbie

Newbie (1/14)

0

Reputation

  1. i haven't seen an EDS dr as of yet..didn't know there was such a thing..lol..
  2. Hello everyone.. I am writing, finally, after I have had my first appointment with Dr Grubb. Let me first say I had been diagnosed from the Cleveland clinic with Pots.. and autonomic dysfunction disorder by my local dr's here.. My appointment was Sept 7th after nearly a year of waiting to get in to see him. We arrived the night before and stayed at the hotel on the campus, which was $59 per night.. And it was great~.. By the way..We went to the spaghetti warehouse to eat..i recommend it..LOL.. Anyhow..We arrived at 10:00, my appointment was at 10:30.. And we were taken back to the room around 12:30, which we were prepared for the wait.. I slept the entire time.. My sister took me, and took notes, which was great.. Dr Grubb then stayed in the room, for 3 hours..total.. Showing slideshow presentations on this illness I have now been diagnosed with. And its called... *drum roll please*.. Ehler-Danlos syndrome.. The vascular type, type IV.. After well over 5 years, I finally have a diagnosis.. And Ehler -Danlos is in some way related to POTS.. But this dr is incredible..Amazing.. Why? Because He takes the time.. Because He is highly intelligent, and it shows..Because He is empathetic.. Because He knows what it is like to have something basically hopeless given to you.. And not only did He give medical advice, such as physical therapy to help strengthen my legs to keep me from a wheelchair longer, and certain medications..But He also gave personal advice..such as seeking a counselor to talk to.. The appointment, the wait was so well worth it.. Now if you read up on Ehler-Danlos, at www.ednf.org you will see that the prognosis is not good for someone with the vascular type.. But.. just knowing, just seeing a dr who knows..who truly knows what I have is very real.. And understanding it is worth all the years of not knowing combined. I also mentioned to Dr Grubb about his many fans here at this site.. He has done wonders in the medical field.. He is an awesome man!!! When I got home, He sent me and my family dr a book, called When bad things happen to good people.. Buy it..get it..Its worth the reading.. God bless you all.. I am most often too weak to get online and write, but I finally had the strength today to do so. Hugs.. Jan
  3. Hi.. Many trips to the e.r. for me, the dehydration and headaches always go together.. And usually I am given some pain medicine thru the iv.. although now..thankfully, I have a mediport.. YEah~~~.. lol.. Anyway..I keep anti-nausea medicine always at home along with some prescription pain med.. hugs take care, jan
  4. I can relate..Its 2:00 a.m and I am up..lol.. and when I sleep I sleep until late..and that is not a good pattern to be in, but it always starts with feeling so bad I need to rest, sleep during the day..soon before I know it I am off my routine again. I tried ambien..That worked for a while until I started sleepwalking, getting up in the middle of the night doing odd things.. So now I take nothing more than the regular meds.. I wish you all the luck..hang in there ~s~ take care, jan
  5. ~waving~..i did.. Midodrine dropped mine to the low 30's and had to be taken to e.r. etc.. So no more for me.. i probably had too much of a dose but still..scared me enough.. Hope you do okay.. jan
  6. Hi everyone. Am planning my trip for my first appointment with Dr Grubb in September. We are so far from Toledo that we need to fly in, stay at a hotel, etc. Any recommendations on the least expensive places to stay, visit?? Any ideas on what I should take, etc?? Thanks, Jan
  7. Each time I read a post here it amazes me the similarities in conditions. I have had a problem of what my dr says my body builds up a tolerence to the medicine and fights it off, or else it just quits working for me. They change my medicine every 3-6 months.. Although I will say so far...knock on wood...*whispering so the medicine devil won't here*..that cymbalta has helped with the dizziness more than the others.. But the bp medicine constantly gets changed it seems. And 4 months to go before seeing Dr Grubb in September.. whoo hooo~~ jan
  8. Giving you a hug..I know how you feel.. The whole crowd thing gets to me at times, especially if i know its coming. I took midodrine before..I have to say that medication was the worse for me.. It dropped my bp too low, (I have orthostatic hypertension). But I know from reading Dr Grubb's information that it helps some.. I feel for you.. I wish someone could wave a wand and take this illness away.. Thank God for the boards..and so many people who understand.. Jan
  9. Hi I am looking for the last article Dr Grubb published.. I know someone gave this to me before.. Can somebody out there give me the link?? Thanks, Jan
  10. No driving for me anymore..Just isn't worth the risk to others out there on the streets..and I am sure with as many fainting spells as I have the dmv would jerk my license away so fast I couldn't blink..lol...so its safer in the long run.. A pain for family/friends, but they agree, its not worth the risk to others..
  11. Its 4:54 a.m. here...anyone else wide awake??? this means bad day tomorrow... jan
  12. hi..i think it says something about that in Dr Grubbs book and possibly the new paper out?? Jan
  13. Oddly enough.. I have pain, between my neck and shoulder blades, don't know if its the same as yours or not.. It hurts..then burns.. Nonstop.. What has helped though, I have noticed is the medication they put me on in the hospital. Niferex, for low iron, magnesium and potassium i believe.. I could be way off on why the pain is better, plus its late and I am wide awake.. .. hope this helps..take care jan
  14. hi.. Its rough, having the test, I have been through it twice. But what choice do we have really when there is a possibility of getting help? Hang in there..I got very sick on both of mine.. I didn't pass out.. My lower legs turned blue.. i lost feeling in them.. I was so nauseous.. and my bp just kept going up..along with my hr.. hang in there..let me know how it turns out! jan
  15. Hi everyone.. I have decided that I am backwards, or inside out or something. Seems that things have the opposite effect on me.. say medication, non drowsy..will put me to sleep. Or if I get a sinus infection, it seems to be 100+ times worse for me than the average person. I have had this for 4 1/2 years now.. And honestly I feel like at times I am loosing it. My bad days are about 50/50 to the good. So that is good, at least I have spurts where the times are good. However, I feel like I am loosing this battle. I see myself change daily. I often wonder why, how, when things will go from bad to worse. I have often said to my family, it won't be pots that kills me.. It will be something simple like an ear infection. Or an allergic reaction to something.. I thank God for this place.. Not for the fact that so many many other people suffer with this illness, but I thank him for being able to talk to others, to know I am not alone. To know that I am not the only one on this planet who is inside out. Jan (and I have as of tomorrow morning, the 26th, made it to my 40th birthday)
×
×
  • Create New...