It's been a while since I posted last. I had a stroke in October which left me unable to walk write and all those other fun things we take for granted sometimes. I'm healing pretty well from it...
I had what sounds to be the same neuropathy in my legs as well. It was an incredible burning pain in both thighs similar to the feeling of running your freezing cold hands under warm water. My doctor...
I have to have a Memory Test says The SSI lady... What in the world do they do that I would need a driver for there and back?? I suppose I'll take it as a good sign since I haven't gotten a Big Fat...
Thanks for the responses. Ladybug, you sound a lot like me. Mine started in my upper thighs also. It has spread into my hands up to the middle of my forearms. It usually gets worse in the evening as...
I have had EMG which came back fine. I had an MRI which came back ok according to my Neurologist. Now I am having a Somatosensory Evoke Potential test done on Tuesday. Wondering what tests any of you...
Sorry I haven't been on for a while. My weight has been steady at around 97lbs now, but I'm pretty sure it is from the Neurontin I have been on for a couple of months now. I just started a medical...
I too have been experiencing that as well. My rhuemy said it was the inflammation in my chest cavity as well. It feels to me like a weight is on my chest or a band pulled tight around my chest and...
I went to Cleveland Clinic last week for continuing problems from my Lupus. He spent a lot of time with me and had a battery of blood work and other tests done. He says it is possible it could be...
I'm off to Cleveland Clinic Wednesday and am a little nervous. It's just the initial visit and I have my long list of questions for them. I was diagnosed with Lupus 2 years ago and although the...
I have a lot of pain in my back as well. I have three fusions in my cervical spine and spinal stenosis. The pain starts there and just spreads. It is always in my left hip and right shoulder as well....
Mine will let me clean it but does have sympathy for me when I feel awful afterwards. I truly feel blessed that he is as sympathetic and supportive as he is. Now, if only I could get him to clean up...
Thanks for the advice. I will have it checked out. Stacy...
I've had 3 cervical spine surgery's and the last one took over a year to heal. I too had several epiderals with no results. The only thing that helped me in the slightest was the prednisone I was put...
There apparently has been blood in my urine according to my last two blood/urinalysis. My Rhemetologist has said nothing about it. I just happened to ask for a copy of them today after my...
Joy, Yes I've been seeing one for a few months now. My CT scan came back okay. I have a test done Tuesday. Not sure what it is but I know I will eat or drink something and they somehow scan to see...
I would agree with the planquenil being the culprit if the weight loss hadn't started about three months prior to taking it. I always have huge bags under my eyes as well which I didn't used to have....
I was diagnosed with Lupus 2 years ago. The planquenil is finally helping /community/emoticons/smile.gif ! Now a new problem.. My stomach. I've lost over 25 lbs. Now weigh 94 lbs. I am either not...
I too have had temporal lobe seizures for many years. My EEG shows it but not a MRI. My seizures have changed over the years from de ja vu to smells to almost a halucination of sorts. They have...
Faunts, I am completely photosensitive. Sun, computer screens, florescent lights. I have temporal lobe seizures and take 1500 mg Keppra / day. I also have Lupus, so it is presumed that is what my...
My pharmacy is telling me Medrol is not available anymore unless it is in a dose pack. I'm not sure if it is just there or are all pharmacies having issues with getting it. I take 8mg a day and had...
I've been like this since I was in my late teens. I'm 40 now. It was and still is a standing joke. My husband just tried to convince me the other day we had gone to Hawaii.. Not funny! Anyways, I was...
I believe the hardest thing for most of us with Lupus and kids is to admit I just can't do it... Most people don't understand that just because I look healthy in no way means I am healthy. We have...
It is all so overwhelming sometimes. From the steroid shots to the confusion. A young girl came into my work with a shirt on that said "No, I don't look sick, but you don't look stupid either"... I...
Thanks Kathryn, it's good to know there are others with the same issue. I know it's a complaint that most would love to have, and probably one in the future I wish I had again, but for now it is...
Thanks for the advice. I'm 5' 3 1/2" (had to throw in that half inch!!). I did have my thyroid checked and although it was off a year ago it was fine this time. I also went to my neurologist last...
I started out at 122lbs and am now down to 97lbs. My rhuemy just says "eat more". I truely do eat but just seem to lose. I really don't have an appetite but do force myself to eat 3 meals a day. I...
I'm going on my third month of Plaquenil.. The GI problems are gone. (turns out I've become lactose intolerant) No releif on the symptoms yet. I've heard it takes a while to take affect for some....
You've raised a question I have been wondering about myself. Would love to have a BA but know the end results would be incredibly painful. I had cervical spine surgery a couple of years ago with a...
Are you getting hives along with the itchy? I get the hot red spots, then hives, then itch... itch... itch... The doctors say hot water is the worst thing for it.. Try some benedryl and think back on...
Wow, I'm so sorry Leilani has to suffer through this at such a young age. I think like so many of us, symptoms at younger ages were dismissed for lack of knowledge. It seems to me that there are so...
I can so relate to this topic! Everyone at work thinks it's pretty funny.... Me, not so much. I'm a florist and am in and out of a cooler all day. But despite that, I'm still always freezing! I layer...
I just got over 2 weeks of the flu and 2 weeks of pain free. I'm a little confused by it all because now all my pain is back.. I started Planquinel about 2 months ago and thought maybe it had started...
Hi Badday I get a butterfly rash across my nose and cheeks. It looks like a sunburn and it is not raised. It comes and goes and can last from a couple of hours to a couple of days. Obviously if I'm...
Thanks so much for the information Rox. I'm sorry you couldn't catch it in time to have a better outcome. I had bloodwork done about 3 months ago and it all looked good, but the puffy eyes started...
My children and I have had it quite a few times. Both my daughter and I are getting over it right now. The blisters look a lot like strep and are very painful, but it is just a virus. A flu virus and...
Thanks for the advice. The weight loss started long before the Plaquenil. I lost another 2 lbs but trying to put it back on. I'm thinking the puffiness comes from overdoing it. There seems to be a...
I was diagnosed with SLE about 1 1/2 years ago. I'm getting fairly concerned about my weight loss. I was about 120 when I started and now am down to 103. I take Medrol and just started Planquenil...
I've been on it for over a month now. Some upset stomach and bloating the first few weeks. A little embarrassing.. (gas). It is fine now.. I found a tablespoon of vinegar or vingar pills worked...
I really appreciate the advice. I can definitely see where starting out slow would be to my advantage. I also take Medrol and Keppra. It's probably more than my body (or my digestive track) would...
My RA just started me on Plaquenil this past week. I've heard so many great things about it so kind of excited. But... Wow am I having side affects. Incredible joint pain, diarrhea, gas. I can...
Thanks for the advice. My parents gave me a different supplement a while back and I had a bad flareup with that as well. My RA said some supplements and vitamins can cause flareups. To be careful....
My parents got me a case for Christmas in hopes for a miraculous recovery! They mean well and are truly the greatest! I just started taking it the other night. So far it has brought on a flare-up. I...
Brit I'm not sure what to say about the docs. My EEG's have always come back with seizure activity. Of course you are on the Keppra now so I have to wonder if it will show Seizure activity or not. I...
Thanks for the advice Possi. I'm sorry you are so "lucky". I will definitely talk to my RA about another type of med. I have also heard those type of horror stories about steroids and definitely...
Hi Kat. I also have temporal Lobe Epilepsy. I have been on Keppra for about 3 years now. It's about the 5th anti seizure drug I've taken. It has worked great for me, so hope you also have good luck...
Yes I am seeing a rhuematologist. I'm taking 4mg 2 to 6 times per day. Depending on the flareup. It only helps moderately. I will definitely have to ask about the Paquenil. Something needs to change...
Thanks Amy! I was in the understanding that the Medrol was for the Lupus. Yes the shot is a form of prednisone. It gives a little boost and the Medrol gets it back to bearable. I'm not sure if my RA...
Bumble 30, that sounds so similar to myself. I was diagnosed about 6 months ago and the rash comes and goes along with the flareups. I get Hives on my ears often too. I am photosensitive and the pain...
Well I was diagnosed with SLE about 6 months ago after my third spinal surgery didn't improve. Now it's believed the surgery wasn't necessary it was possibly a Lupus flare up that was making an...