look up the porphyria foundation member stories and see if any of that sounds familiar
ahhh porphyria the great how and why. ya cant get more simple than a mutated gene. it has to be really old if it effects all races but not equally. yes if ya cant tell ive got the psychosis. weeee what a ride. porphyria is the mama and environmental stresses are daddy and its offspring are the infinite manifestations lupus being one. some say ms is another. who knows if thats true but imagine what that implies, in our vast population we are still experiencing inbreeding depression.
Jim, Im sorry - I didnt thank you for your reply earlier. Its also nice to meet you. I actually sweat alot too - at the weirdest times - with no cause. AND - I sweat NOT in my underarms or the like, but in specific spots - my head, the creases in my arm fold, striaght line down my chest. And though I feel hot, when I touch it its ICE COLD. Soooo bizarre. It happens in the middle of he night (umm, no, Im not in menopause yet! been checked-lol). I live in cold Boston (Quincy) and 4 homes up from the beach - its COLD. And I constantly leave the house without a coat cuz Im hot as Hades. Its terrible, but I thought it was maybe from medication. Who knows? haha - I just layer, layer layer my clothes. Another weird thing tho. no matter HOW hot I feel, ALL my joints - particularly my hips, knees and ankles are ICE COLD to the touch. Yes, indeed - Im a whacky woman with a whacky body...And Jim, God Bless you too.
Ha! I think the 3 of you are lucky. I'm always wrapped up and have a space heater blowing on me all day. I can't get warm.
I think we are all crazy, but I wouldn't want to be crazy with anyone but the people who are my family and friends here whl:) at least we all understand each other. I definetly include my wife and daughter in that group. they have to be to love me and take care of me through all this. At least for now I am feeling pretty good. Check out the raw food diet thread in lauries lounge, I have been doing that for 4 weeks now and am doing good, we will see how it continues while I keep tapering off the prednisone. Laurie, nice to meet you also and yeah I sweat at night also but lately not as often as I used to. Middle of last summer I would sweat so bad out side at work my shirt would be soaked from my shoulders clear down to at least my belly button area. I finally got over being embarassed about it. Nothing I can do about it so I might as well accept it. Yeah, crazy man:) Again God bless you and I wish you all well. sincerly, JIm.
I believe you know my Aunt Barb, she recommended that I go on this site and since yesterday when I signed up to become a member I am just beside myself that I am not alone during all of this. Truly this site must have been a God sent for me, as I feel sometimes I struggle alone. I have been in a flare up for several months now. I am weak, I was diagnosed with pleurisy and a partially collapsed lung, my lleft hand goes completely numb I drop things it wakes me up at night in excruciating pain, burning pain as well, blown up fingers like balloons, cold as anything, if I put it up or down it gets worse. I just contacted my neurologist, but I believe I have neuropathy right now. Just sometimes feels like there is no lite at the end of the tunnel, but I know there is hope and God gives me strength.
Thanks for sharing what you are going through and thanks to you all who also share as now I don't feel so alone in this. Lauri I was wondering if you wouldn't mind sharing the name of your neurologist? Aunt Barb told me that you have found a good one. I am currently on plaquenil but it is not cutting it anymore, I take Lyrica which has helped with the nerve pain in my hand. But my Rheumy feels I need more invasive medication thereapy or infussion therapy. I am very scared right now, I cry constantly, my family supports me but they live 4 hours away, my mother comes up as much as she can. She helps my sister alot with my 7yr old neice who has epilepsy! Thank you again ! for listening and giving me some will power to keep moving forward to getting all the right answers and all the doctors in place. Thanks so much Jess (Pipsi)
Oh my gosh!! I am SO GLAD you found us here honey! If for nothing else, you will find love and suport from others who have been there (or are STILL there). I will absolutely send you a message with the neurologists name. Feel free to contact me any way you can honey. The WORST thing we tend to do with this disease is ISOLATE. It is such a relief when we find out that all our weird little symptoms are not so weird after all!!
I look forward to talking toyou honey - and hang in there!!
Lots of love honey
Big hugs all around.
I deal with lupus that has hit my CNS... I have lots of neurological issues such as seizures and visual implications etc. I dont have much to add that others have imput other than to give lots of support and hugs.
love and light,
sending big hugs!
yes, i have cns sle and it's not fun, but it gets better. i just had an MRI yesterday and the doctor there missed my port by a country mile so the contrast die when under my skin. then they gave me saline to help dissipate the die.. talk about pain! i'm still uncomfortable.
anyway, i do have lots of nuero symptoms - tremors, numbness, siezures, brain fog, memory loss, loss of balance, weakness in limbs, etc... i guess that's just how it goes with cns sle...??
anyway, i hope you all are having a flare free day!
Just an update on me - decision is that these attacks were CNS lupus and inflammaiton of the blood vessels in the brain. I am feeling a bit better, my regular lupus sym are better as well (joints feel ok, fatigue better) all due to the 60mg prefdnisone. I am still having attacks, though, of HORRIBLE neurological pain - Oh. My. Gosh. Brutal. Hoping the Immuran gets that under some better control and I believe neuro may start me on Neurontin (as you spoke of earlier Rob). Just want some relief...you guys know what I mean....
I just started the taper to 40mg and I begin Immuran today. The prednisone is just not working as well as it should or has in the past. Besides, they obviously want me on the lowest dose possible - so starting Imuran.
I will start a new post about something the neuro told me the other day during my EMG about how doses of prednisone of 60mg or higher over a 2 week period can literally destroy parts of the brain responsible for memory! He is a really smart guy, so I believe this. Intersting...never knew that and - uummm...I do NOT need any more problems with my memory! Mine has been SO BADLY affected (as I know the majority of us here) by the lupus itself!
Anyway, thats the update with me - Ive have had in the past three weeks - EEG, 2 EMG, CT scan, CT-A, brian MRI, 2 lung xray, neck xray, and blood work up the wazoo...Almost over - 2 more EEGs and maybe lung CT (poss lupus pneumonitis again - but I dont think so - lungs feel better:) ) So - thank you guys, for always being here. I was a little concerned about the Imuran but the FIRST thing I did after leaving my doctor was come on this site to check on everyones experiences. It made me feel better. God, I am so grateful for this place...and all of you