Yesterday i was diagnosed with undifferentiated Lupus and then my Rheumy tells me she thinks I have MS and is sending me back to my Neuro. I have already been diagnosed with Livedo Reticularis and Raynauds and now this. i am so scared to get a MS diagnosis. How many of you had the same problem at the beginning of diagnosis and what was it like for ya'll?
I have MS symptoms, but have had negative MRI and am now in the process of checking to see If I have lupus. I am not familiar with undifferentiated lupus, my issue seems to be kidneys related. I have Raynauds too but a negative ANA.
I just went through the same experience! I've been dx with Lupus now for 6 yrs, but it never went full blown. My ANA has always been low. Now I moved to another state and right away got me a new rheumy, and in the meantime Ive been looking also for a dx of MS, because I started having the tell tail sx ON, vertigo, tingling numbness etc. Plus my sis had been dx with the same sx. Anyway, I go to this new neuro, and he says that having the Lupus this long, I should've had some kind of organ involvement by now. It always seemed to hit me with the fatigue joints and rashes, but really nothing else. So, after showing him my sx list, he said to me, " I think we need to see if maybe you've had MS all along, and not Lupus." The only thing is, I do have the butterfly rash on my face, or as they call it the malar rash, and I am very sensitve to the sun. In fact once, my old rheumy told me ' I don't think that's a Lupus rash, I think it's from roseasia' So I went to a dermatologist, and he told me that it's a Lupus rash. She, my old rhuemy was always getting annoyed with me if I quesitoned her about anything. She was the only Rheumy in the are so everyone had to go to her and she knew it, she was moody and sometimes difficult,,and no one seemed to like her. I actually dont think shes very good, if she never investigated into my dx to see if it could be something else.
In fact one time I did go to her about the tremors and also the lesion, and she got real defensive, and yelled," THAT'S NOT FROM THE LUPUS, EVERYONE ALWAYS BLAMES EVERYTHING ON LUPUS!" So any way, that's where I'm at now, seeing a new rheumy, and a new neuro trying to find out what's going on. Lets us know how you make out! Sandioe
yes I have had Arm and leg weakness and/or big muscle spasms after taking hot shower or just getting overheated. these usually came with vertigo. but once I cooled down they'd reduce or go away.
I'm not dx with MS; just in limbo land once again. I've had blood test and everything is normal. I'm waiting for my insurance to give the ok, so I can go to the neuro. I'm thankful that my PCP believes me when I say I don't normal.
I know little about lupus, but I do know that hot showers are *forbidden* with MS. Don't risk raising your body temp by fooling around with heat. This can cause pseudo-exacerbations of MS, and maybe long-term problems too. It's just not worth it.
Iris, was your rheumy saying you have lupus and also MS? This does happen. Please let us know how you are.
Yes, my Rheumy thinks I may have both Lupus and MS. All my ANA test were negative except one for Lupus that was high. She said I probably had inflammation in a joint that day. She started me on Plaquenil and I will continue to get the steroid shots. The things that bother me the most, is the fatigue (I want to sleep all day) and the weakness when taking a shower and the tightening of the muscles in my left arm and leg. The
The last steroid shot seem to calm down some of the ankle and leg pain.
I'm a limbo lander but i have Lupus issues like Raynauds feet and hands, the Lupus discoid circular rash on both legs and one on my back, Livedo Reticularis, chilblains (suspected lupus chilblains), mouth ulcers, light sensitive, joint swelling without arthritis, recurring kidney issues, IBS and very bad circulation issues along with...
MS like issues that come and go, walking like a string puppet, spasticity, balance issues, spasms, tingles, bladder issues, lost a truck load of IQ, numb spots, hot spots, lost word recall, stuttering and slurred speach, double vision etc
Not sure which camp to put the pain, pain or the pain!
I'm also sensitive to heat dirrectly or indirrectly, i've been getting the occational heat rash since my early teens, I burn easily etc. Temperatures affect me, both cold and hot, hot zapps my energy and i can think straight, so hot showers and baths as well as air, are a no no for me.
But i dont test positive on any blood tests for anything at the moment and even though i have been anemic for most of my life, my last blood tests showed iron levels very high which was very confusing, that and being told i was very healthy when i couldn't even stand up or speak properly lol
Everything I have read about the ANA test suggest that the only time they are positive is after the flare is gone not during it. It seems to me the doctors should know this by now and wait to test after the flare is over.
For the last 2 days my IBS has gone crazy and I am afraid to leave the house. I too have bladder issues, lost word recall, blurred vision (yet the eye doc says my eyes are fine, just vision change), IQ has definitely gone down, spasticity with left arm and left leg, and i seem to walk into door frames alot. I also get mouth ulcers and nose ulcers and I have bad circulation in my hands and feet.
So far all my ANA test except one was all negative( and it just showed I had a joint inflammed at the time), but I am flaring right now.
Do you ever get any kind of rashes? I was on Plaquenil for almost 7 years. It seemed to help. Make sure you have a regular eye check up especially the retina cause Plaquenil in rare case has been known to damage it. According to a couple of Dr's I spoke to, it is very rare, but I faithfully had this special test done once a year. Ask your Rheumy about the testing. You know what's really strange, Plaquenil is an anti-malaria med used to treat or prevent malaria. I noticed when on it that the mosquitos never bit me, seemed to avoid me. I don't know. see if it works for you, but if they find definitely Lupus stay out of sun, it will cause huge flare. Even when just driving around in your car you need the sun block.
The Lupus will cause joint inflammation, and heavy fatigue. Watch the sun, use sunblock, not sunscreen. If you do have Lupus your ANA will be very elevated, and the steroids do help the sx. I think the tightening of muscles and weakness with the shower though sounds more like MS. I don't know about you, but I noticed that I couldn't take a hot shower cause it hurt too much. The hot water just made my skin hurt, and also the muscles. Now trying for the MS dx, I've been noticing if I make the shower more than luke warm, I do get that weakness, like I have no strength to finish shower. Does anyone also get pain a bruise-like pain on the skin from a hot or too warm water hitting the skin, who is dx? Hope you get some of your concerns resolved and you find out whats what. Keep us posted, we're thinking of ya! Sandie
I'm sort of getting use to being told one thing and then the blood tests not proving it, now i've got the neuro thinking i'm a nutter lol and the psych's saying no your not its neurological, just another conundrom.
Oh well, i'm getting use the idea of not knowing whats wrong with me, things happen and i'm still avoiding going to the dr's, i still want to know but i'm getting tired of the effort to find out. It helps that i've come a long way forward, i'm sure i'll be back on the merry-go-round when it goes down hill again and it always does knock me off my feet (literally lol) and i crawl my way back.
I knew things were going to be bad with my last wally episode because i started walking into door frames, no balance to speak of, lots of stuff happening like the new sx of stuttering and slurring. I'd lost words before but not the stuttering. i had always been able to hide most of what was going on, this time it just wouldn't go away and i was so different to my usual self, that they noticed.
It took a long long time to get most of my words back, it took even longer to relearn how to walk but i'm a stubborn so and so.
I get what i feel like is a skin burning pain. I don't know if it is caused from the shower though, sometimes I wake up in the morning and its just there. I have had it on the inside of my left arm, my left side and my left hip. I can't stand anything touching or rubbing up against it.
I just had the eye exam for the Plaquenil, so i am good to go.
My Rheumy said it might take a month, 6 months or a year or 2 for the Lupus to rear its ugly head strong enough to make the test positive. She has got to be the sweetest doc I have ever met, she actually takes the time to sit and listen and explain things to you.
Can't use the back brush any more. I look like a racoon with my rash that seems to never go away. Can't wear pants sometimes because my kidnesy kill me. my knees are shot from the RA, Most of the time... sorry forgot what i was saying. Forgot my Grand daughter's name for 5 mins. I feel like i'm in a flare ALL the time. Had stroke Sx that lasted over a mo. The nuero told me, " can't help you, you will have to go to a rhumy to get on their fancy meds" Pain, pain pain! All the time. I'm a nap junkie. Everything you good peeps have talked about, i have. I know how you feel. God bless us all.
My neuro thought I had MS, then my wrist had a sudden attack of arthritis.
The rheumy he sent me to didn't think I was autoimmune, ran some tests found a low complement and WBCs in urine. Sent me to the GP.
He cultured and found RBCs and no bacteria and sent me to the urologist.
Urologist said he didn't think it was interstitial cystitis but knew the other docs wouldn't be happy if he didn't look. Hello.
Now I have interstitial cystitis, a couple of attacks of arthritis, raynaud's, a history of costochondritis and sacroileitis accumulated over time. And I'm losing my hair and have chronic fatigue.
Go back to see the neuro after infectious disease doc says it's not infectious (I've also been running a low grade fever for three years off and on), who hears about the other autoimmune things, saw the tremors finally and decided to run tests for thyroid.
Now I have autoimmune thyroiditis.
But they still have no idea what's causing the neuro symptoms. Although we do now know they respond to high dose steroids.
*sigh* I am afraid I will not have a brain left by the time they figure it out.
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