Hello Everyone, I'm sorry I haven't been on in awhile. I decided to get a divorce and it's been a rough year. I'm starting to date now and I wondered about when to talk about my lupus. My ex husband...
Hi Everyone, I have a question about SSI and working. I can't work yet so this is a future question. Does it matter what kind of job you have? I hope to be able to work part-time eventually. I used...
Hi Everyone, I was just wondering if anyone else has been diagnosed with Erythromelalgia? It affects my ears/face/hands/legs & feet. I was diagnosed two years ago and my docs aren't doing...
Hi Jaime, I've had my neuropathy for years (from Lupus) and it has slowly gotten worse but then so have I. It's in my legs & feet and it causes numbness, tingling, itching, shocking, stinging...
Thanks everyone for all the info. My first appt. with the new doc is on the 30th and then they will schedule the biopsy after that. I'm more worried about my results than the actual procedure itself....
Hello Everyone, For those of you with Peripheral Neuropathy I was wondering if heat makes your symptoms worse? I have heat intolerance already and I've noticed that as it's gotten hotter my...
Hello All, I have been spilling protein and now they are going to do a kidney biopsy. I'm really upset because I've gone this far with no kidney involvement and I was hoping it would never be an...
opps sorry I guess I was a little vague. :) it was a sural nerve biopsy for my peripheral neuropathies. My rheumy was concerened about how bad they were getting and wanted to make sure that it wasn't...
Hi all, I'm got my nerve biopsy results before my appointment and I'm doing the usual impatient thing and trying to interpert them myself. I hate getting results early then waiting a week to find out...
Hi okie, I get the B-12 injections once a month they prescribed 1ml. I can't absorb it either. Thankfully my husband gives my the shots, I just don't think I could do it. I had a stomach biopsy to...
Hello there your reasons aren't silly this stuff is scary....My neurologist wanted the test done and I put it off for awhile because I didn't want to know either. Eventually though I felt that if I...
I am so very sorry that you are having such a hard time right now. I just wanted you to know that you are worth something to me. I haven't been on this forum that long, but I've been around long...
Hello Everyone, I have a question about Imuran. I'm supposed to be starting it soon and I was wondering what I might expect. I researched it online and it sounds kind of scary. If you have taken it...
Hello Everyone, I am scheduled to have a nerve biopsy in a few weeks to see what is causing my neuropathies to get worse. Has anyone else had one of these and if so what should I expect? Were the...
Hello Everyone, I had to go to the ER last weekend for severe chest pain. Ouch. It turned out to be pleurisy (inflammation of the lining of the lungs), they said it was common with lupus. I got...
Thank you all very much for the advice. What everyone has said makes a great deal of sense to me. I need to keep trying new things and see what works for me. I like the idea of a "new normal". I know...
I know this isn’t an easy question to answer, I’m just looking for some help. My question is how does everyone else deal with the disappointment and guilt? At the end of a weekend I find myself...
Hi Everyone, I was wondering if anyone has experienced tongue tremor? I have had it for nearly two months now. It comes and goes. It happens when I'm taking pills, flossing..stuff like that. I've had...
Hello, My lupus affects my joints, skin, muscles, CNS & PNS, as far as the peripheral neuropathy goes...at the time of diagnosis it was affecting both legs. (and no one really knew why I had lost...
Hello.... Me too! I get the itchies a lot...even my nose itches /community/emoticons/smile.gif My doc said it was a side effect from the pain pills I was taking vicoden etc. I'm not sure if he is...
Wow, I cried a little....Thank was a wonderful song. Thank you for sharing /community/emoticons/smile.gif ...
This is an embarrasing topic but...... I was wondering if anyone else has trouble peeing. I've had tests done about a year ago because I was having incontinence, I was told I had overactive bladder...
Congratulations /community/emoticons/tongue.gif I am soooo happy for you!!!!!!! YEAH!!!!!...
Hi Kasey, Most of my (blood) labs were negative in the beginning and even now (after diagnosis) they are borderline or up and down. My biopsies were positive as well as some scans and some other...
Kasey, It is so weird how you described that because I've experienced almost exactly the same thing. The only difference is it's mainly my legs only rarely has it affected my arms and if it does its...
Hi Quack, I have vertigo too, its commanly associated with MS but there are many many other causes. I have Lupus brain lesions which the doctors attribute to my memory loss, speech and cognative...
Hi Stacie, My weakness creates a shaking thing. I wasn't weak at first it started with a burning pain and then regular pain and then i lost a lot of muscle in my arms and legs i'm sort of excess skin...
My rashes get aggravated by a shower or bath...even if it's only warm water. They get blood red and stay that way for hours. Does this happen to anyone else?...
Hi, quack welcome to the group I get a wide variety of rashes....I was talking about the face rash and the red scaly patchy rashes I get on my upper body, I also get the disk shape ones that scar and...
I have the exact same choking sensation and pain, often it will happen just because of swallowing a pill. I do have the terrible heart burn acid thing due to a hiatel hernia, my gastroenterologist...
I'm so sorry you had to deal with a doctor like that one, I think we have all seen one of those through the course of our illnesses. I have doubted myself once or twice over the last 7 years and in...
Yeah your right, I guess I was trying to avoid yet another doctor....wouldn't it be nice if the lupus doc could treat every aspect of lupus it would save everyone alot of effort :)...
Hello... I asked my rheumy about what I can do for my rashes and he said to use OTC cortaid. I've tried it but it doesn't do anything for me. Some of the larger rashes are starting to scar and...
Hi everyone, I am 28 years old and I was recently diagnosed with Lupus. This came after years of searching so I thought it would ultimately be a relief when they gave it a name; but I don't feel...