lillybits

does the pots ever go away when it is caused by ehlers danlos? I have more than 15 different diagnosises now and they are doing a connective tissue cascade on me now because my ana is elevated. I was wondering if pots ever goes away when it is caused by another life long condition? i would like one of these health issues to be able to be resolved.. any answers or thoughts would be greatly appreciated!

kim

thank you. my son has been diagnosed with aspergers and epilepsy. has not had a seizure in a year tho thankfully. my daughter has mito issues as welll as myself. we are the portrait of health i swear ha ha i figured that we would have to drive into phoenix. one of my friends works for neurology associates out there. i just need out of the humidity like yesterday. i know the monsoon season is going to be hitting out there soon also so i am hoping to move winter or spring.oh ya is ahccs still available out there? thank you, kim

Hello I havent posted in a while but I was wondering how health care is out there? I lived out there 9 years ago and am looking at moving back. the humidity is killing me out here in wisconsin.i am on the last stages of getting my ssi but will need state health care because of that. my son is also on ssi due to his touretts. my husband is also disabled due to back injuries..We are looking at the havasu area. I just need to make sure that we will be able to recieve health care out there for my pots, eds, gi issues and lupus.. thank you!

kim

need to see a geneticist. they can do most of the testing thru blood work any more. I have vascular eds I am just following suit from my dad 60 is old in my family so I am just thankful for every day that I can wake up and see my kids!almost 33 and still kickin!

kim

i have 2 tea cup chiuahuas they freak out when i pass out and get my husbands attention!

i see dr. chalimski there he is very good and actually cares about his patients. all the medical staff there were all very nice and careful of making sure i didnt pass out during my visit.

he is awesome and he scheduals follow ups every 3 months!

i get those symptoms from lifting my head up too fast

i am thankful for a supportive family, my best friend and husband that has to drive me anywhere i need to go and takes awesome care of me. for my tini chihuahuas i got when i was completely bed bound for a year. i am thankful my kids and my self are learning patience not everything needs to be done yesterday! ha ha and now trying to learn to live on what is needed and not wanted on a new slimmer budgett!

i take loranidine (clairatin) seems to help some...

is it a liesion like in ms?

katybug that means full body mri and mra's and cts to moniter all the aryeries and veins and heart for anurisim development after the initial round of scans and blood work they then check on you yearly. for repeat scans.If you have any unusual pain or one of your eyes swell you need to go to the er!!!!.bren he is basing it on the fact that all my colligen/connective tissues are deteriorating and overly flexible and arent tight enough to make my blood pressure and volume rise appropraitly. i cant spell to save my life today!

I had a wonderful apointment with dr. chalimski(sp?) in milwaukee but got some additional diagnosises. One of them is veds. which was crushing to me since thats what killed my dad. Is anyones else on here dealing with this also? He told me it is the cause of my pots.

i see her husband at froedert . he is also awesome!what do you currently do for your gastroparisis? I am tired of eating and being in pain from nothing moving

thermo tabs I was told are otc. but you pick them up in the pharacy department

I have them on all my fingers and toes. I have eds, pots ncs, d and b12 diffiency , and a few other things.

Before I had my kids I was told that I couldnt have any because I had abnormal cells(precancerus) . My son was a suprise and my daughter was planned. I didnt know I had any health problems. With both kids almost being born preterm and being told I couldnt have any more or I wouldnt make it thru my pregnancy I had to have a hysterectomy at 24. Now that my kids are 8 and 9 I have found out that my son possibly has eds also, tourretts, seizures, and aspergers. My daighter wasnt supposed to make it to two, neverto walk and has mitochondrial disorder, atypical cp and some learning dissabilities. But she is 8 today!!!!Now I have a laundry list of diagnosises and wondering if anyone else on here has children with like health problems. I wouldnt trade my kids for anything in the world and thank god for them every day. I just cant shake the feeling that I passed them a short deck.

kim

I am currently on a battery of laxitives because mine isnt working at all. if your stool is getting lighter have you had your liver enzimes checked? light stool can be a sighn of liver problems.I am even going to pt for constipation.. dont know if it is going to help or not but its worth a try!

thats the same thing I was going to ask. are you vey flexible and double jointed, see your veins thru your chest? very velvety elastic skin?I have vascular eds.

i didnt have a great experiance at mn either atfter going there for one to two weeks at a time for 6 months I finally got diagnosed with pots and ncs. was given a script for midodrine, abdominal binder, given a hand out about pots, ncs . then the dr left. the docs at milwaukee cheminski(sp?) is awesome! he ordered more labs, reffered me out to genetics and told me why and how i have pots. never knew i have vascular eds but now it all makes sence. and i have follow ups in 3 months!

my doc is pretty sure i have vascular eds i fit the entire profile from top to bottom. even with injections of b12 and 50,000 iu of d i am still low my body isnt taking it. the L carnitine is what dr chaminski said along with the coq10. does ground flax seed and magnesium help at all with gastric issues?

thats the same thing I was told today. just got home dont know what type I have but everything is hypermobile on me and he said that is exactly why I have pots also! he told me I have multiple dysautonomias as well as small fiber neuropathy. he said that with coq10 and l carnitine it can improve!!!!

the cold hates me ha ha ! I live in wisconsin so there are only a few times I can go out with out layering. I get out as much as possible but i cant even sit in my own house with out a hoodie on!

I was deemed incompasitated from my neuro and that it would take atleast a year to find out if they can stabilize me and I still got denied....I totally dont understand that at all.. I guess that i need to get a lawyer now...Anyone know of any good ones in wisconsin???ugh

Lily,

I had to go to a SS doctor and he said he didn't know anything about POTS but could see I was disabled and he wouldn't disagree with my primary doctor. They are supposed to be independent. I think the primary purpose of sending people to SS doctors is to discourage people and make them give up. (I know, I am so cynical)

I also had to see an SS shrink. I don't know what he said but he must not have said I was a hypochondriac. lol

ha ha ya i am not looking forward to that but i am hoping that they will see that i am trying and that i am as disabled at this point in my life as the doctors see it. I usually try to laugh everything off but the little bit of extra cash that i could get now until i can get back on my feet with out my husband stressing on me would be great!