Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
I just wanted to type a quick note to tell you all that I'm sorry for my absence, that I miss you all and I'm praying for you daily. As far as I know I haven't passed my "kidney stones"...and from what I've been told I should know, as its quite painful. In the meantime, I've had some back pain, but its not flank pain, so we're not sure what that is now. I've been sleeping A LOT...anywhere from 12 to 16 hours a day. I haven't been able to eat much as most meals either cause nausea or I vomit. So far I've lost 8 pounds. Which may not seem like a lot...but my weight never fluctuates. Especially since getting IH. When I gotIh I initially gained approx. 25-30 pds., but haven't been able to fluctuate from that number...until now. Of course, it's not a bad thing, but obviously, I'm not losing in a healthy way. I still have blood in my urine and frequently carry a low grade fever. And, of course, I am still dealing with IH itself. Occasional headaches, pressure, jaw pain, etc....although the shunt doesn't seem to be swelling as often as it used to. And, at last, I hate to admit it, but I am also dealing with a bit of depression. (Although, I have heard that kidney function has been linked to mood function...so maybe that is the cause...???)
So, know that you are all in my thoughts and prayers. Cath, how are your HA's and eyes? Threeangels...How are you and how is our littlest angel Aiden doing? TJ, how is the VA shunt working? Of course, I want to know how all are holding up...I'll try to do some reading here to get caught up.
Much love,
MM3
So, know that you are all in my thoughts and prayers. Cath, how are your HA's and eyes? Threeangels...How are you and how is our littlest angel Aiden doing? TJ, how is the VA shunt working? Of course, I want to know how all are holding up...I'll try to do some reading here to get caught up.
Much love,
MM3
Good to see you . I have been there and done it all with stones and I wanted to share with you . My first bout was at 23 and I had blood in the urine . I was actually told it was normal. Idiots .
Finally saw a REAL doc and he had me get an IVP asap and it showed a stone in my ureter . I never had much pain and this just boggled the mind of my urologist . This was a large calcium oxalate stone - about the size of half a pinky nail . Maybe a little bigger . All I ever had was a real sense of urgency - like I had to go all the time and felt pressure all the time . A few months went by and they gave me antiobiotics in case there was infection impeding the passage of the stone . A few days later I passed it in the middle of the night ...CLUNK! in the toilet . I got it and took it to the uro the next day and asked if this was it . He said yes with his jaw dropped to the floor . He said .."how can a little 23 yo girl pass a stone that would make a grown man cry ? " He was baffled . Through the years I have had hematuria at one point or another and it always went away so I passed more small ones apparently . It seems I am an anomaly !! Maybe you are too !!!!
I had awful back pain before I was dx with IIH ...maybe the two are not related ....good luck and I am so sorry you are dealing with so much right now .
Glad to see you here. Sorry to say I have been a stranger to our DS friends too. Sorry to hear of your pains and unknows. Nothing worse than not knowing.
Well I am on the verge of VA hell. It is working intermitantly where the resevoir is not filling all the time I press on it and my HAs correspond to whether the shunt is pumping or not. I fear it will be completely plugged very soon. I might go see my NS next week if it continues.
Other than that life is GREAT. I just finished negotiating a full time job and start on Monday, VP of something or other. The thought of working 5 days a week is both exciting and HOLY SHIT, I gotta go back to work?? lol
Hope you start feeling better. FB me.
TJ
Please don't fall apart on us! And while weight loss may be nice in some ways no that is not the healthy way to lose it I myself am struggling to lose it but am not jealous of the way you are losing it. :(
Hang in there and check in whenever you feel well enough. We all miss you and it is not quite the same without you here.
Hugs,
Mandy