becky Posted September 26, 2005 Report Share Posted September 26, 2005 hi all, i just wanted to write and tell you all about my latest trip to see my cardiologist, i was really lucky because i am suing my ex employer for disability discrimination i had to have a medical exam and because they couldn't find anybody else in this area who knows about pots i got to see my own cardiologist in the private hospital in chester for an hour! great! he read me the letter that he was planning to send to the insurance company (the ones who are against me) and it sounded really good, however he had put in a line saying that this is clearly a case for disability discrimination and they told him to take it out, he said he'll find another way to get it in there! so having spent five minutes talking about the case i got the rest of the time to tell him what has been going on, mad symptoms again etc. he said that he doesn't think that i am having a reaction to the florinef but that i might have a problem with my adrenal glands, have to have a kidney scan. i have to see an ENT specialist cos he says my vertigo isn't a pots thing but sounds like my ears are playing up. he says that he might tilt table me again (NOOOO) to see if my symptoms are getting worse and i have to have some other tests ad increase my paroxetine to 30mg daily. it was so good to see him though, he agreed that i need to get a new gp after the last incident and he's writing to her to complain about my treatment. so i'm now seeing him again in about two weeks because he says that there is no reason for me to be suffering again, i have got a good cardio! anyway sorry to write a huge essay but i feel so good, like something is really getting done, and that i will be supported in court no matter what. oh, if anyone has any info on the adrenal gland thing can you let me know cos i don't have a clue what he was talking about. thanks for reading big hugs and good wishes to everyone else, hope you are all well. becks x x x Quote Link to comment Share on other sites More sharing options...
melly4 Posted September 26, 2005 Report Share Posted September 26, 2005 Hi, and congratulations, Becky. Sounds like you have a really good doc on your side. I hope things continue to improve for you. I, too, am being worked up for adrenal insufficiency...again. I think what your doctor is looking for is Addison's disease, which can cause people to have low blood pressure. They'll check an AM cortisol level. I saw a new doc today. I thought I was seeing an internist, but he turned out to be a GP, but was really great. He didn't throw anxiety disorder accusations at me, and he referred me out for a tilt table test...all in 20 min. This has got to be some kind of record for me as far as doc visits go. I warned him that I was his worst nightmare!! He also wanted to check for hypoglycemia, in addition to Addison's. I don't know if hypoglycemia is part of POTS, and I don't think that is my problem. But he saw that my mother is hypoglycemic, so I guess he wants to rule that out as a syncope culprit. Like you, I finally feel like I'm getting somewhere. I wish you the best of luck with your disability discrimination case. I can't work in my profession (med lab tech) because of the meds I take, and am waiting for a decision on disability benefits. Take care, Melly Quote Link to comment Share on other sites More sharing options...
persephone Posted September 26, 2005 Report Share Posted September 26, 2005 Backy that's FAB! He may have been referring to pheochromocytoma- a type of benign growth associated with the adrenal gland that can cause an adrenalin rush when you stand that makes your heart race (that's my understanding of it)have a look here, it explains it pretty comprehensively:http://www.nlm.nih.gov/medlineplus/ency/article/000340.htmIf that is what you have, it'll be pretty easy to fix. Quote Link to comment Share on other sites More sharing options...
melly4 Posted September 26, 2005 Report Share Posted September 26, 2005 Becky, in regards to the adrenal issue: do you have high blood pressure, either sustained or episodic? My son has episodic high BP, and they worked him up for pheo, but never found a tumor on his adrenals or anywhere else. Pheos can show up in extra-adrenal areas, esp. in children. Has your doctor done a 24-hr urine on you to test for catecholamines or a plasma free metanephrine? This would be a first step in looking for pheo. My son was positive for catecholamines in his 24-hr urine, but a lot of things can cause that. Usually, with people who have pheos, the level of catecholamines is extremely high, and their BP is usually extremely high sustained or they have episodic spikes followed by low BP. I had a friend have one removed. Surgery can remove the tumor, but special considerations have to be made to normalize BP prior to surgery. Again, I hope you get things worked out, and I hope it's not pheo. Quote Link to comment Share on other sites More sharing options...
Sunfish Posted September 26, 2005 Report Share Posted September 26, 2005 hi becky - i'm so glad that you had such a productive appointment. re: the adrenal issues, there are a wide variety that your doc may be wanting to test for or rule out, including (but not limited to) the things others have already mentioned. personally i have a cortisol deficiency which essentially is a MUCH lesser degree of something similar to addison's; day-to-day it's not a big deal for me & treating it hasn't improved other things in ways that we hoped it might, but not knowing about it contributed to my having a dangerously rough time after surgery & will dictate some other procedures/protocols for future surgeries (hopefully nothing big, but i know i'll have to have endoscopies & colonoscopies & they count for me...gggggggrrrrr). if you do search both on here & on the web in general you should find lots of info though.... melissa Quote Link to comment Share on other sites More sharing options...
Poohbear Posted September 27, 2005 Report Share Posted September 27, 2005 Happy to hear you had good visit with your Dr and glad you are getting the support from him. I hope your disability case goes in your favor!!!! Quote Link to comment Share on other sites More sharing options...
becky Posted September 27, 2005 Author Report Share Posted September 27, 2005 howdy all, cheers for the replies, i don't think he's testing for addisons because i've already been tested and it was fine, he was a little concerned that i have bad pain in the right side of my tummy, had it for about six months though and my gp said it was just cos i have ibs. anyway, i have to do three 24hr urine tests and have an mri of my tummy and kidneys (?) thanks for all the suggestions though, at least i know what to have a look for. i do have episodic high bp and i told him about that. on the plus side though he say's that he is sure my VVS is under control and that my pots is getting there and that the other symptoms are not related to pots but he'll get it sorted for me! yeah i'm gonna be a well person again and then i'm gonna kick some butt at my diability hearing!! woo hoo! sorry major sugar high, just had a hot chocolate and my bp and pulse have shot up, syncope in college with a skirt on is not going to happen today so i'm off to chill out and cool down.thanks again for reading, and pers thanks for the link i'm going to check that out now. big hugs to all. becks x x x Quote Link to comment Share on other sites More sharing options...
melly4 Posted September 27, 2005 Report Share Posted September 27, 2005 Becky, from you symptoms and tests being run, they're definitely looking for pheo. I wish you luck with that. Keep us posted. Melly Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.