July 8, 2013 at 4:04 pm #481
I’m just wondering does anyone know if Addison’s disease and/or pseudotumor cerebri are linked to EDS or common in EDS patients? Ik pseudotumor cerebri is common in EDS patients but is Addison disease connected to pseudotumor cerebri or EDS type 3 it’s self?July 9, 2013 at 10:19 pm #3886
I’m just wondering does anyone know if Addison’s disease and/or pseudotumor cerebri are linked to EDS or common in EDS patients? Ik pseudotumor cerebri is common in EDS patients but is Addison disease connected to pseudotumor cerebri or EDS type 3 it’s self?
Hi Jrl_3327, I don’t think anything is in the journals yet, but I’m working on it! If you’ve heard of The Driscoll Theory, you know that I strongly believe (and our family has experienced) the hydrocephalus also known as pseudotumor cerebri. You can find some of my videos on Diamox and External Communicating Hydrocephalus on my site. Please check the out! My hypothalamus isn’t worth a darn any more, and I believe I’ve come close to an Addison’s crisis in the past. No one knows if our squashed pituitaries are related to this or not. Is your cortisol and ACTH in the dumper like mine is? Your doctor can run a stimulation test to see if your adrenals, or pituitary, or hypothalamus are to blame. Let us know? 😉July 10, 2013 at 7:53 am #3888
Hi I just got an order for blood work to be done yesterday from my pcp. I have an appt next wed. with a endocrinologist. Back in July 2011 I had my carpel tunnel Dr tell me he wouldn’t perform my surgery bc he tought I had something else going on besides carpel tunnel such as Addison.. nothing else was ever mention about it again until this past week. Its been proven that I do have the pseudotumor cerebri and the diamox zyrtec and zantac have all help tremendously as long as I don’t allow myself to get to acidic. Thanks to u on that Dr. D.. but I just all of the sudden have gotten so fatigued the past month no motavation what so ever and if I could I would sleep 24hr it seems along with no appetite at all the feeling of nausea and vomiting and left back & abdominal pain worse than my normal ha!. So I mentioned this to my pcp and also mentioned how my scars have went from white to brown, how my gums have even went from pink to dark brown all over time and he said it sounds like Addison’s. He gave me a dose some kind of cortisol steriod through my vein with saline after. And within 10 min I could actually stand up straight which I haven’t been able to do in a very long time. He just didn’t explain how long will that steriod last and also now that I got the medicine in me when I go get my blood drawn today will it be thrown off. Should my blood have been taken 1st or will it not matter for the blood test results? Ik my sodium has always been low I’m told to add salt to my diet but the problem is I can’t eat I’m I am now 7lb lighter than Iwas 3wks ago. I will keep u posted after I see the endocrinologist next week & see if I get some more answers!
Thanks Jamie:)July 10, 2013 at 10:49 am #3889
Hi Jamie, I wondered about Addison’s when you described your scars as turning darker! Do you notice darkening of your skin elsewhere (arm pits, inside of your elbow joint, etc)? It sounds like your doctor is on the ball! Just by hearing from other patients, I *think* “true” Addison’s isn’t that common with us, but adrenal fatigue and pituitary (and hypothalamus) problems ARE all over the place. Do you know if your ACTH and/or a.m. cortisol levels are low? Many of us have low ACTH and cortisol levels without having “true” Addison’s (but that means we do not have the skin darkening, either!). You can google for images of Addison’s skin darkening, I’m sure. Please let us know how you are doing! 😉August 15, 2013 at 4:12 pm #4110
Hi Dr Diana, I have dark spots on my gums that are turning darker brown and spreading. Yes on the sides of my elbows are darkend there’s a patch on the front of my lower leg/top ankle spreading down to the top of my right foot. The lines in the palms of my hands are dark brown and my knees. I noticed the spots on my gums over 8yrs ago but didn’t think anything about it now its almost all of my gums. I was started on cortef 10mg 2 wks ago. My energy has improved but my appetite is still in the dumps along with every muscle spasming in spots I never imagined could spasm. Also still feezing all the time… But I’m on my way to finally getting some answers along with the correct meds! 🙂 I know I have adrenal insufficincy I will find out in 2wks if its true Addison’s or not.. I will keep ya posted!! Thanks for your educational input I wouldn’t of got this far with out it;)August 16, 2013 at 1:13 pm #4115
Awesome news, Jrl_3327! Most of us end up with sluggish adrenals, but not “true” Addison’s. Honestly, yours sounds like Addison’s to me because it it wasn’t “true” Addison’s, you wouldn’t be getting the pigment. So glad you’re getting the proper care!
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