A little about me. I am not yet dx. with lupus ,guess I'm still in denial. I have been diagnose with MS ,RA,raynoud's ,colitis,ON's,gerd,PN,hernia,sponyolosos ,ddd,scoliosis. I've been with this PCP for about 2 years that feels that I have Lupus. And I have a family history of lupus and other AI diseases.
In the past years most blood work only showed high inflammation marker and high ANA. My ANA fluctuates from neg to positive. The highest being 1:1640 H pattern .
My clinical symtoms as of right now are :
rashing, some face blistering (mild) .Mild butterfly rash in the sun mild raise rashing elbow and thighs
bowel and bladder problems
hair loss /thinning
pluersy ,asthma .bronchitis (not all at the same time of course =)
swelling ,painful joints
severe muscle weakness
mouth and nose sores
I've been in denial for some time now but it time for me to except the possibility and let my doctor re run the test . I'm in a huge flare not and it (whatever is flaring) has made it to my lungs. I can breath ok just feel like bronchitis again along with the rashing ,hair loss, ectt..... I had to miss church today so I'm a little sad.
And found some raised rashing on my right elbow last night.
Getting a bit sick of being diagnosed them rediagnosed. Its taking its toll on my family . They can physically see that I have some health problems but I'm going to hold off until I know for sure what all is happening this time.
Does lupus cause the same neuropathic (gait ,weakness , atrophy) as MS does ? This is one of my problems that I'm dealing with . Not knowing if this is MS or Lupus or lupus and some overlapping or MS and Lupus. My MS diagnose was mostly based on old lesion ,clinical findings and positive NCS and ON's. But I don't relapse and remit like most MSER's mine is just progressing . Plus the lupus symptoms.
Its all making me crazy . And I can get into see my PCP until January.
So these is what brings me to you all.
Welcome to my crazy life. =)
Hi daylight~ Welcome to WHL! I am so sorry that you are going through all of this! You found the perfect place because we have someone here with MS and Lupus and he often says that even his doctors often don't know where the MS ends and the Lupus begins. His name is Rob and his one of our wonderful Moderators (along with the fabulous Susie who should be a doctor with all the info she has to share with us).
This is a fabulous place with wonderful people. Although it is called we have lupus there are many people here that are undiagnosed or have other autoimmune diseases. I look forward to getting to know you and please make yourself at home!
tgal thank you for welcoming me here. I'm looking forward to talking the Rob. I've heard that it really rare when one gets both MS and Lupus so it's got me thinking . I haven't had a blood panel done since 2009 so its time to re check.
I'm looking forward to getting you too. =)
Welcome to the WHL and you'll find alot of the threads as you look through so helpful.
Rob's excellent he was brillaint with me also and he'll explain like maria said about MS but you might not have that MS it could be Sjogren's syndrome [Muscle wastage] which i've got and it makes you very weak in your muscles and body.
Like yourself i've had these symtoms in 24yrs but was born with it and i had slight symptom's from the age of 5yrs old but now at 42 they're hitting at me more rapid.
Butterfly rash/skin trouble [so i use steroid based creams and 50 block for when we do have some sun in the uk because after 10mins it burns me out.
It's affected my eyes and muscles of the eyes also
Hairloss and bald patches which have come back grey
Pluresey twice/pheumonia 3 times/ severe bronicle bronchitis
At the moment my muscles are swelling around my lungs and that's painful
swelling and painful joints
dizziness and actually passing out
DVT [Blood clotting]
Two forms of epilespsey
Two major strokes at 24yrs
Disfigured spine from birth off spondalitis [found that out when i was 22yrs old and they can't do nothing but if it had have been found from a child they told me they would have platted my back till a certain age to help it]
daylight the list goes on and some people find it hard to live with and some cope quite ok, it's all down to the person themselves. I'm ok with my epilepsey now had to come to terms with it but regarding the raynauds and everything else i'm down more at the mo like yourself and finding it hard but your not on your own in that respect and there's so many lovely people on this site to help it's unbelieveable and anytime your down and need to chat, just carry on.
Luv Terri xxx
thank you for replying Peridot-Gem.
It's all been a crazy ride. I've got a Neurologist that is 97% sure it MS and my PCP (internist) who thinks its lupus + things overlapping . All I know is I'm getting worse. Going through a bad flare. Woke out today dog tired with more sores on my face and small one on my hand that could be a bug bite but it doesn't itch. Sore knees, throat, more hair loss,sore and numb hands and forearms . Plus the chest congestion. I know I'll be feeling better soon or else I hope to be.
I've been thinking about my grandmother lately who had lupus. No one knew that she was that sick. Well we knew she wasn't well but didn't know why. She never complained. She got a little grumpy at time but not a complainer. We didn't know she had lupus until they had found the cancer. A double blow. Looking back to the way she was ,you can see all the signs of the lupus. I wish that I hadn't of pressured her so much to walk and eat better or to get out more. She was weak.
I know that most people that get this disease live a full long life . But the possibility of being diagnose with lupus scares me more than my MS diagnoses. Plus I haven't been successful with most of the drugs the doctors have tried with me . I'm allergic or the side effects are to much for me.
Waiting till Jan. to see my doctor is proving to be very hard . And ironically I expect that by the time I do see him most my symptoms will be better. I find this happens to me some of time I schedule to see the doc. . I'm hoping that the blood test will shed some light on whats going on. I really really don't want to do an LP .
Well I'm think I'm going to play some poker to get my mind of all this. =)
Originally Posted by daylight
I'm Rob, I'm sorry I did not catch up with you sooner. I do indeed have both SLE and MS. I also deal with something called Trigeminal Neuralgia, but hopefully that's now a thing of the past. I recieved the SLE diagnosis in 2004, and the MS diagnosis just about two years ago. It can be very difficult to determine what symptoms belong to which disease, as many of them are the same, affecting the same systems. Like you, I have a family history of autoimmune disorders-my mother has SLE. How long have you had your MS diagnosis? There are some differences between some of the neurological problems caused by MS versus those caused in a person who has SLE that affects the CNS, but they are subtle, and very hard to tell apart without running tests. Having a good Neurologist is essential. What sort of meds and/or treatments have you received for your MS, and did they have any beneficial effect?
I'm looking forward to talking to you too. I'm a moderator here, so I'm here every day. Feel free to PM me if you like. Oh, and welcome to our group!
hello daylight and welcome whl you will find we are just one big family always here for each other look forward to talking to you kim l from sydney australia
Originally Posted by daylight
I have the skin rashes mate and sometimes they itch but when they're itching i'm sure it's my nerves kicked off with it and then i have stages where they don't and after a while out the blue scabs form just small ones, then i had my feet bad ontop losing clear fluid and i used steroid plasters on them and the plasters burnt it out. The chest part can be terrible the last 2 days my chest and lungs have hurt me, they've got me on three different types of inhalers, mind you bronchitis and asthma alone can be a nightmare to the lungs besides other things adding to it.
Well my dad had some signs of the lupus which i've got, bad hands /skin trouble, then his feet and 2 strokes plus arthritis and before he died cancer of the left lung and liver he went within 2wks of being diagnosed at 63 but he often told me he was fedup of life.
Well like yourself i've had no medication yet, the skin specialist wanted me on presidone but my epilepsey tablets would have been bad with it, then i was in the day unit and they offered me a steriod jab to help the swelling's and i refused had that all before and won't go there again as they don't suite me, so come january i'm due to see the rhuematologist to see what he says about more results from bloods and x-rays.
I laughed at you going to play poker to take your mind off it. Terri xxx
sorry its been so long . I've been sick .Some chest congestion,sinus and cough. well I just have to make it through a few more weeks and I can have the blood work done. Still have a weird rash on elbow and around hair line. Had 2 blisters on face but they are almost healed.
Its been raining here so I'm all swollen up . My feet ,hands ,neck ,legs are pretty swollen. Lots of joint pain and really tired . But I'll live . It will be nice to know for sure if this is MS or lupus or both .
I did also get some biotin for my hair loss . Hopefully it will start working soon .
Its nice to have people that understand about this stuff and have gone through the muk of being diagnosed and re diagnosed and so on......... I'm trying to be patient thro all this but its wearing my down.
I am so sorry you are feeling bad. I know that it is emotionally draining trying to be patient but please remember that stress is your biggest enemy right now. Find something that you enjoy doing and find relaxing. Make yourself do it. Maybe it is soaking your feet in warm water or taking a quiet bath (if you can get in the tub). Maybe it is sitting in a quiet room with candles with music playing softly. Just find something that will help you relax. It sounds silly but if you can find a way to relax a bit every day it will help drop your stress level which could help the flare not be so intense.
If nothing else works just stop in here. We will be glad to listen!