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Muscle Spasms
Does anyone diagonased with lupus suffer from crazy muscle spasms and twitching.
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Thanks for your info. I have had Lupus for 6 years but am finding its hitting me pretty hard at the moment. Fevers like crazy, pleurisy, kidney infections, but this I am unfortunately used too. What is worrying me is these bizarre twitches and really violent spasms or ticks as I call them as the almost replicate Tourettes  Syndrome ticks. They generally affect my arms, neck, legs and hands. I've also started shaking all over. My vision is deteriorating and I;m dizzy and have balance problems. I fear its targeting my central nervous system now. So getting back to BFS, did you find that medication Methocarbomal helped??n
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I am not sure if you are sill reading this..but once again I am on the search in the middle of the night due to muscle spasms. This all started for me in Feb 2012. I have seen so many doctors and we are down to a few things: positive ANA homogenous cells, 1.68  a B12 deficiency and also low vitamin d. I have lost my job and my home and am so tired of whatever this is! I have ruled out all vasculitis,connective tissue disorders and infectious diseases. I have and no fever (but one ear infection) uvietis, impentigo, and constant UTI's. My rhum thinks it is Lupus due to no lesions found on MRI for MS. I am not sure if my symptoms are matching though. I cannot look up with my eyes and they are in severe pain all the time!! It feels like the muscles are contracted for about four to six hours at a time on the eyeball. WEIRDEST THING! I was wondering if anyone had any insight? Thanks to all and I am sorry you are all going through similar situations!!
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You really should visit an optician(uk) they can examine your eyes and refer you to the hospital eye emergency dept. You may need steroids. Please go asap
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I am not sure if you are sill reading this..but once again I am on the search in the middle of the night due to muscle spasms. This all started for me in Feb 2012. I have seen so many doctors and we are down to a few things: positive ANA homogenous cells, 1.68  a B12 deficiency and also low vitamin d. I have lost my job and my home and am so tired of whatever this is! I have ruled out all vasculitis,connective tissue disorders and infectious diseases. I have and no fever (but one ear infection) uvietis, impentigo, and constant UTI's. My rhum thinks it is Lupus due to no lesions found on MRI for MS. I am not sure if my symptoms are matching though. I cannot look up with my eyes and they are in severe pain all the time!! It feels like the muscles are contracted for about four to six hours at a time on the eyeball. WEIRDEST THING! I was wondering if anyone had any insight? Thanks to all and I am sorry you are all going through similar situations!!
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Hi, I am so sorry that you are going through such pain and uncertainty but I do understand and sympathize with your questions.  I too was hit like a ton of bricks last December 2011 when on a routine BP check and my internist ran the usual CBC and I received a call that my blood platelets were 53,000 when the low range is usually in the 140,000.  The next words out of his mouth were I am referring you over to an oncologist at our cancer center.  What I did not know was that all of my blood counts were out of whack and the search started for what was wrong with me.  Cancers were ruled out thankfully but I too then began this journey and have been stuck and poked and prodded so many times that I am used to it and I used to faint at the sight of blood.  Now, I just sigh and go on.  
I had a lot of muscle and joint pain and my left shoulder even froze in place before I was diagnosed by April 2012 with Lupus. I have had some restless leg but was put on Gabapentin which is used for Fibromyalgia pain and restless legs and it seems to work well. I have also had bouts with anemia throughout my life and it seems as the Lupus was around before I was aware it was around.  
My eyes have changed but I believe it has been due to the Prednisone doses.  I hope that you find a great RA and can get some relief for your symptoms.  
My biggest discovery yet is that no person wears the same Lupus hat and that each individual has their own set of issues to deal with.  Good luck to you and God Bless.
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Thank you for your concerns! I am sorry you are going through the whole "health battle". I am at a dead end right now and about to start planquinel or something like that. I have had severe reactions to medications and cannot take anything for pain becase it KILLS my eyes when they get tired. I am going to go to a teaching hospital if this med does not work. The eye pain is by far the worst thing I have ever exp in my life! Hopefully I can get some answers soon. Until then its just me, the computer and my bed lol. Thank goodness for down comforters!!! ;)
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Hi,

I am so sorry that your eyes are giving you such trouble.  I went yesterday to our teaching hospital in Louisiana and had more labs run.  The doctor seemed very knowledgeable and strangely enough said that my Lupus diagnosis could be wrong.  That opened another can of worms but she did tell me I could keep lowering my Prednisone dose and get off the Imuran.  These were great words indeed as the medications have made me feel worse than before I started treatment.
I do wish you great luck with finding some answers and some relief.  These immune diseases are really rough on all parts of the body and there is no one place to try to fix, really challenging.  
Please keep me posted on your progress and yes you are right down comforters are nice although here it is still 82 at 245a and another 100 degree day tomorrow.  Life in the south and summer, ugh!
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Wow this is all so illuminating! I've had a tentative diagnosis of Lupus since last September but the rheumatologist seems hesitant to make the commitment, not that an official diagnosis would change anything really. I deal more with my PCP who is sympathetic but admittedly knows little about treatment for any form of Lupus, and my nephrologist who seems a little more knowledgeable but again, reluctant to cross the line. Does anyone have a recommendation for a rheumatologist in the Dallas/Ft. Worth area that is good with the disease?

PJ
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Hi Patti,

I have a friend that lives in Dallas and I believe she just went to an RA last month but she deals with Fibromyalgia and spine problems but it might be a referral.  With what I have absorbed about Lupus and immune diseases in the past 8 months is that a great hematologist is one of the keys.  Also, I have been referred to our teaching and research hospital here in Shreveport at LSU.  The first RA and I butted heads as you can see in my other posts and I am on my second one.  She seems much more willing to listen to me and my symptoms and side effects than the other RA was.  She is having me see one of the research hematologists there in the next week and we will go from there.  
I seem to have some of the criteria for Lupus and some for other auto immune diseases as well so they are going to try to isolate the problem.  The big one for me is the low blood platelets and no response to treatment.  Walking timebomb I guess for now.  
Supposedly Lupus is one of the most challenging diseases to diagnosis correctly and sometimes is the diagnosis when a doctor hits a wall and does not know where to go next.  
I do really like my hematologist that I have now but feel another opinion will only help me get to the root of the problem.
I looked on line and Methodist and Baylor are in Dallas, do you all ready go to one of those for treatment?  Baylor is ranked so high, seems like you have wonderful choices there.

Anyway, sorry to ramble, I am up as usual at 245a probably because of the Prednisone, hard to sleep.

I will ask my friend too, but please let me know how you are doing.  I find other people with the same problems are so much easier to chat with.

Teri
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Hi Patti,

Here is the name of an RA at Presbyterian Hospital from my friend in Dallas.
These are her words about her doctor.

yes, I love my Rheumatologist. Her name is Dr. Kathryn Dao. Her PA is great too, Leilani Law. Her clinic is the Arthritis Care and Research Center, ph 214-373-4321. They are associated with Texas Health Hospital (Presbyterian). Very very well respected. She was referred to me by my neurologist (Gerhardt). She was very very thorough with me and Leilani was great.

Hope this helps you.  Please keep me posted.

Teri
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Hi,
I am what they call C4 deficient Lupus. From what I understand, that means that testing for Lupus is spotty. I can be positive one day and not positive another. Although the symptoms are always there!
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I am seeing a rheumatoid for the first time in NOV. "new patients can start being seen on NOV 3RD" really? thanks.

Anyways I started out having CRAZY muscle twitching in my arm associated with kind of a "bone pain" then my whole arm swelled up and went numb. i was put on NSAIDS for the pain, then my blood work came back that i had positive ANA and LOW platelets. the twitching in my arm moved to my WHOLE BODY. legs, arms, hands, back, butt, feet, back. I CAN SEE my muscles twitch. its gross!

had more blood work done and my labs came back worse. I also feel like i have restless leg syndrome. it *****. and there are morning where i feel like i cant get out of bed and i feel so bad bc I have a 2.5 year old lil guy.

i started taking 1000 mg of vitamin C, juicing and taking this immune probiotic  shots bc i feel like crap all the time and get sore throats, etc... they help out a lot.

any thoughts? lupus?! i cant wait till NOV so i can find out whats wrong with me. btw my leg just had a crazy twitch.
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434278 tn?1324709825
Another thing you might could try in the mean time is magnesium.  1200 mg calcium and 600 mg magnesium.  

Have your dr. test for vit. D and B-12 levels.
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Hi,

I don't know if you are in small rural area or a city but maybe you could be referred to another RA before November.  I do know that they will work you in if you are having severe problems.  I was diagnosed with SLE Lupus back in January of this year and because of my platelets was sent to the front of the line so to speak.  I am on my 2nd RA and like her much better than my first one.  If you have research hospital or teaching hospital you will find they are wonderful because of all the new information they are privy to.  
My 2nd RA is the head of the department in a teaching hospital so she is really up to date and caught the fact that my platelets were not coming back up at all and I have just been diagnosed with liver disease caused by the undiagnosed Lupus which is the root of my platelet problems.  So, while I am very disturbed at the new findings I now am pointed in the right direction to find out how bad things really are.
There is another support site that I have found that is really wonderful and people respond on it everyday so you might have more information to sift through.
Hopefully you will be able to be seen earlier than November.  I am in Louisiana and could steer you to doctors in the south if you are close.  Anyway hope this helps.  The other site is mdjunction.com .  It never hurts to have other opinions and hear other peoples stories, it has been very helpful for me.  
Please feel free to keep me posted or ask any questions you like or just to vent. I am Mina001 on the mdjunction and in the Lupus support group....

Teri
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My bf was diagnosed with lupus nephritis at 15 and is now 39 and has been in remission for almost 20 years. Yay for that! But I have noticed that he has always had these muscle twitches/tics that he says are painless. another yay! recently the twitching has become more frequent. Through many hours of research we have found that you must be careful with immune boosting drugs/herbs ect. He was taking a supplement that was a blue/green algea called chlorella, it is wonderful for the normal person but not for him. Since lupus is and autoimmune disease that can exacerbate the problem and even cause more flare ups. He has a yearly physical and has always had trace protein and trace blood in his urine that will most likely never go away due to the scarring in his kidneys. his diastolic blood presssure is also slightly elevated 130's/90's which we have been told is also "normal". I pray that he remains in remission. To help ensure that we eat low protein meals and juice often using alot of dark leafy green veggies. Good luck in all you do!!!!
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I get them and it's horrible...use to only get em in my legs but it has progressed over my whole body and sometimes it feels as if I'm getting a heart attack ! Very scary...God bless~!
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I have lupus and have had spasms starting in my tummy then extending to my limbs. I also get a burning numbness before the spasms.  I do not see a Dr (I don't like them), but u all's posts was very helpful ty.
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WHAT PERCENTAGE FIND HIMSELF/HERSELF IN REMISSION?
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434278 tn?1324709825
There is a 2-10% chance of remission.  Also, the onset of menopause is associated with milder disease.  
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Well all dis is new to me I had been sick since June 2011, and since oct I started getting muscle spasms real real bad to the point that I thought I was having a heart attack, they will start on my legs and they will make my foot get so tight that I was unable to move it and I would get a burning sensation on my other foot that went all the way to the middle of my chest and to the point that would take my breath away and once I get one of those bad ones Im left with no straight,  can anyone help me.  Oh I'm taken lots of meds as well.
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434278 tn?1324709825
Welcome to the forum.  Sounds like you are having a terrible time w/ spasms.  Have you been diagnosed w/ lupus?  What medicines are you taking?
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Hi there everyone. - New here
I've been almost a year with no exact diagnosis. Started with a complaint of Carpal Tunnel. After having blood work, the doc said I had lupus. Sent me to a Rheumy who said it was not lupus. He tested me for everything under the sun but ended up referring me to another doctor. That doctor said it was probably rheumatoid arthritis even though rh factor was negative 2x. She also found a pinched nerve in my neck.
Stopped going to the doc. Felt I was wasting my time. Pain is still strong in my hands with swelling, joint pain, warmth, aching, sharp and sometime pins and needles. Pain is also in my neck, feet, knees and back. In the last few months, I've been getting random muscle spasms(mostly at night) and a lot more pain in my feet and lower legs. Almost feels like muscle cramping in my calf. But also, for the last 6 weeks, I have had vertigo steady. Worse at night when rolling in bed but have had to leave work(unable to drive) and have almost fell down at home. Feel at a loss..... But back to the doctor I will go..
Anyone else ever been told it was Lupus, It's not Lupus?
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434278 tn?1324709825
Oh yeah.  It looks like lupus, well, maybe not, well, it's something autoimmune..... yes, it happens all the time.

Have they checked you vit D level?  

Some things that you might want to give a whirl is magnesium along w/ calcium.  I was having some vertigo along w/ some headaches.  I took some distilled salt water and irrigated my sinuses w/ a nette pot.  That has helped quite a bit.  

I have a lot of muscle spasm, twitching, cramping symptoms too.  Sometimes charlie hoarses.  Very painful.  I think it's perhaps calcium deficiency.  Do you drink soda pops?  They can pull calcium from your bones...too much phosphorus in cokes.

What lab lead the first dr to decide it's lupus?
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I'm not sure if they have checked my vitamin D but I have an appt. in 2 weeks so I will ask. I was first diagnosed with Lupus from a blood test. I was later told it was a lab error and that it was actually negative. I'm wondering if the negative result was actually the error. When I read these forums, I can relate to most of what everyone is saying. My mother-in-law has Lupus and she thinks the same thing - that maybe it was a wrong diagnosis. I noticed this morning a bruise on my leg that I don't remember doing - second time that's happened in 3 weeks and they're dark purple bruises - not real big but noticeable and not sore.
When I go in, I'm going to ask to be re-tested.
I do drink soda, maybe too much, but I will cut down and try some of your suggestions.
Thanks for the help
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Been reading some other posts. I wonder if maybe my ANA was down on the day they repeated the bloodwork. My doc seems to be basing the whole diagnosis on that bloodwork. The bloodwork was negative, so I don't have Lupus? I had x-rays, ultrasounds, emg plus I've been tested for ankylosing spondilitis, carpal tunnel, rheumatoid arthritis, leukemia, lupus... plus a bunch of tests with letters in them.. lol. Don't know what they were for but I am anemic and a migraine sufferer. I take a pile of vitamins everyday to help and sometimes it does. Never been tested for MS but I think my symptoms are more like lupus then MS. I work in trucking selling parts so hopefully if it is lupus, I can get some modified duties. Been at this job 4 months and am finding it very difficult - but maybe this is just a flare up
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434278 tn?1324709825
OK, when you go back to the dr. ask if they could repeat the ANA.  I am under the impression that they have to wait a certain time before they can repeat the ANA due to insurance issues.  Anyway, when they agree to re-do the ANA, spend time in the sun prior to having the test done, even if it's cloudy.  Depending on the exposure - how many clothes you have on and cloud cover - but around 15 min.  "If" you have lupus, this will cause an immune response, thus causing your ANA to be elevated.  A positive ANA is not the only thing they look at, there are other symptoms.

There are 11 criteria for a lupus dx.  You must have at least 4 of the 11 to recieve a dx.

They are:
1. malar rash over cheeks (butterfly rash) (74%)
2. discoid rash, red raised patches
3. photosensitivity - reaction to sunlight, resulting in skin rash (50%)
4. oral and nose ulcers
5. arthritis (95%)
6. serositis - inflamation of the lining of the lung or heart
7. reanl disorder - excessive protein in urine and/or cellular casts
8. neurologic disorder - seizures, or psychosis
9. anemia or low white blood count or lymphopenia or low platelet count
10. positive ANA
11. positive anti-DNA or anti-Sm, or antiphospholipid antibody or false pos. syphilis test

Other symptoms are:
fever (90-95%)
low vit D levels
abdominal pain
chest pain
shortness of breath
blood in urine
hair falling out (27%)
fatigue (90%)
muscle pain and weakness (90%)
dizziness
poor memory
headaches
poor circulation in fingers and toes
tingling in extremities
diarrhea
bloating
nausea
weight loss
blurred vision
depression
palpitations
raynauds (where fingers turn white when cold)
intollerance to cold
sore throat
lymph node swelling (50%)
...to name a few

Keep in mind that fibromyalgia, CFS, MS and lymes disease also have similar symptoms.  
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OMG! Some people that know what I am going through. My spasms sound identical to most of you. It usually happens when I'm comfortable in bed almost sleep or when I am asleep and it wakes me up. It is so frustrating when I go to my doc and all he says is "I don't know what can be causing it". Recently, it has gotten more painful and more frequent. I have the 5 mg flexeril but it makes me so sleepy so I break it in half and it still leaves me groggy for the next several days.
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434278 tn?1324709825
I'm still learning about all of this, but I'm thinking the muscle jerks can also be associated w/ fibromyalgia too.  It must be common for people who have had a busy day for their muscles to jerk at night as they are unwinding.  Is your sympotoms only at night or does your muscles jerk during the day too?  Is this your only symptom?
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I'm new to this page,was reading comments on muscle spasms,I suffer from them also, usually when extra tired. I have found for me a glass of oj helps, I still get them but it slows them down and not as many at one time.  My are usually in my back.
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I was diagnosed with lupus 2 years ago.  I have raynaulds and fibromyalgia as well.  I noticed my tremors before I was diagnosed. I have tremors in my hands, but when I lay down, I feel tremors, almost like I am shivering, in my shoulders and ribcage, I feel like my muscles never relax.  My muscles are always tense. I saw a neurologist and he put me on an antisiezure medication which, after one dose, I WILL NEVER TAKE AGAIN!!!!!  I was so groggy and dopey...  i think I will try magnesium and ask my primary for a muscle relaxer.  
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So I went to the doc. Mentioned to her that I have tested positive for Lupus in the past and also negative. She seemed very interested in my livedo reticularis which I did not realize(at the time) could be a sign of Lupus.... Anyway, she said the symptoms were there and she was going to do a full panel blood work. I've been calling for 3 weeks for results and keep getting told the doctor is not in or results aren't ready and finally today, the receptionist says the doctor left her a note saying the bloodwork was fine, book follow up appt and MCP ultrasound.....
So now, what I'm wondering is - does that mean it's not Lupus? Because the receptionist never said "it's not Lupus" Can the blood work be normal with Lupus?  I don't understand why a follow up appt would be necessary if everything is "normal".  I assume the ultrasound for my hands is because they hurt the worst and I have developed nodules (which I have also heard is common in Lupus) Just not sure how much longer I can continue to wait. It gets harder every day and the doc she doesn't want to start treatment without a diagnosis so the only thing I take for pain management is advil...
Anyway, just wondering the opinion of others - Anyone else have this happen? Should I be concerned?
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434278 tn?1324709825
I suggest you get a copy of the actual lab work.  I've had drs. tell me everything was normal when it really wasn't.  I often wonder if they really look at that stuff.  I would also keep a daily journal of your symptoms.  Along with your activities.  
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So, I am 40 now and I was diagnosed with Fibromyalgia over 10 years ago, about four years ago I had to have my Gall Bladder removed which is supposed to be an outpatient surgery and ended up admitted to hospital with sever pancritis, liver and kidney failure.  I have been diagnosed with brisitus, arthiritis, vitamin D deficiency and Perenimious anemia (b-12 definciency) . I have discoid rash on my elbows and forearms, severe migranes, severe mucle spasms and horrible, make me cry cramps.  I have severe fatigue and can not make it through a day without a nap.  I had an ANA test done 10 years ago that came out ok.  Because of the negative ANA test that I had 10 years ago the pysicians I have seen say it can not be Lupus.  I am convinced it is Lupus,  is it appropriate for me to demand a ANA be done again?  I keep having spurts of pancritis, and my liver and kidney function are never normal.  
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434278 tn?1324709825
Yes, I would definitely push the issue.  Just because there is a neg. ANA does not totally rule out lupus.  
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Wow you sound a lot like me, I started out with the Scleroderma symptoms, I have horrible Reynauds, now to the point of pain when it starts to "thaw" out. Is affecting my esophagus, Doctor describes as a lead pipe when food goes down, no peristalsis anymore. Most recently had fluid around my heart, Tamponade occurred, had to have "windows" placed in my space around my heart. Have had all the + tests for lupus. But now my concerns are of horrible bloating /gas, gets worse as the day goes on..also have started to have severe spasms in lower legs /feet...also muscle twitching...any thoughts on any of these??
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434278 tn?1324709825
Have you been diagnosed with Scleroderma.  It can definitely cause swallowing issues to occur.

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Hi Guys :)
I'm 24 years old, and very much thinking I could possibly be (developing) Lupus. I have an appointment with an MD tomorrow, but I'm worried they will dismiss my symptoms and tell me I'm just stressed. It all started about 4 years ago.
I started getting numerous UTI'S in summer 2009. The UTI's were like clock work, every two weeks. I would even pee blood with them they were so bad. It was summer, I had a pool in my back yard, I was dating a new guy- the doctors came up with everything. I can't tell you how many times I heard "You're a female, this happens to us."
My sophomore year of college, I turned into a kidney stone- making machine! I even had one lodged in my ureter for a WEEK and they needed to do surgery. I had never been so sick in my life.This happened twice (2 surgeries). SEVEN kidney stones later, I went to an endocrinologist because one blood test showed a parathyroid hormore to be elevated. The parathyroid hormone was never elevated again in future blood tests, so I was released from the endrocrinologist's care. I am happy to say, I haven't been plagued by kidney stones for some time now. (*knocks on closest wood furniture*) I still get random "ticks" in my kidneys, maybe like there is stones bouncing around...
   So, lately... I've been having some sort of "episodes" before my period. They usually come on approx. 2-3 days before my period. I am on a birth control pill. The gyno said that I possibly had too much estrogen in the pills, and we've tried a butt-ton of different ones. Nothing seems to deplete whatever these "attacks" are I'm having every month. Let me explain.
    Every month, I wake up with a KILLER MIGRAINE. Like, I've been partying for days and days... such a sickening headache. I have thrown up multiple times from them being so bad in the past- can't keep my eyes open. Then, within a few hours, my body follows suit. My neck goes, my shoulders become so sore, my legs feel like I've been doing heavy squatting, very weak muscles.  Simply moving from the bed to my couch in my tiny little apartment is exhausting. Needing to get up to go to the bathroom is so strenuous. When this starts, I know darn well there is no school for me,no work for me- no nothing for at least 2 days. It makes me feel so worthless because I'm in my last year of school and I want to get this figured out before I graduate and get a job.
    Last month (September) I had a rash accompany the "attack". It was on my left shoulder. Red, raised, scaley patches. It stretched down to my shoulder blade. Didn't itch, just hung out for a couple of days and then vanished. I thought it was dry skin, so I put cocoa butter on it a couple of times a day and just chaulked it up to dry skin. The two biggest patches donned a boarder, the other smaller ones did not. I'm so mad at myself for not getting a picture to show the doctor. I usually stay sick for close to three days, until my period starts or I start a new pill pack. These "attacks" are so painful, I BEGGED my mom or boyfriend to take me to the hospital and they just told me to rest it off and I would be ok. "Resting" during one of these things is impossible. The heating pad is my only relief.
  If it were just related to my periods, perhaps I wouldn't be so concerned, however, last semester during finals, I had the same sort of situation happen. This, however, was mid- cycle... completely ill. Pounding headache, body aches, next to "immobile", vomitting. But, I had ONE finger swell up... just one. My left pointer finger. (I'm right -handed)  Thought I may have hit it on something (I just didn't remember), the joint was really swollen, looked like one giant sausage finger. I couldn't bend it down all the way. It stayed like this for a LONG time- quite a few weeks and gradually returned to back to normal. Not long after that, (this was May) I developed a weird little dry patch on the same finger. Somedays it looks red and irratated, other days (like today) it's just dry and cracking. It's still on the tip of my left pointer finger and now it's October. And of course, what lead me to this page... I have the muscle twitches too. Not painful by any means right now, just annoying when trying to fall asleep or sitting with my feet up.

Basically... I just need to know I'm not crazy guys. I'm SO scared this MD tomorrow will just brush me off (Tomorrow is our first meeting). Tell me what you think... and I will keep you posted.
For the record, I've had seven kidney stones by the age of 22, I KNOW pain, and whatever I'm going through right now is no joke- I'm not a wussy.
   Whether it's lupus or not... I just want to get it figured out. I can't miss school when I'm so close to the end.

Night!! Katie
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I am so happy to hear others experience the horrible muscle spasms that wrap around your waist! I recently been in & out of the ED because of it. I had a dr who literally tried to tell me it's pneumonia!!! I finally was given Valium to relax the muscles. I increased my prednisone too-- this has been very helpful. Please keep sharing your post-- w/o hearing from people living with Lupus I think I would be seriously depressed. It lets me know I'm not out of my mind.... Thank you all
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How are you doing with the twitches? I have started to have them. They are anywhere on my body, but only when resting in my Lazy Boy or in bed. When I am very tired, they keep me awake for some time.
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This discussion board has helped me realize I am not alone! I have started to have lots of twitches. They are anywhere on my body, but only when resting in my Lazy Boy or in bed. When I am very tired, they keep me awake for some time.I mentioned it to my neursurgeon (back surgery soon for a bone spur) and his response was, "I have heard he same from several patients." But he didn't give any explanation. It's frustrating, and others can't possibly understand. They just think I'm complaining again. I've had a full year now of back pain....tried everything. Surgery Dec. 17. I'm not thinking it will help the twitching, though. I'm really looking forward to getting off pain medications. I hope that will help!
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So, it's been about half a year since I posted here... I still have no DX...Except, the doc thinks maybe it's Fibro but they'll only say that for sure when she's ready to give up looking.. ugh..  I was referred to a neurologist who said he had nothing to add to my case but this past week, I think I had a Lupus Butterfly rash. It was mild and only lasted one day (although I put some Aveeno cream on it). It looked sort of like pimples on my face and was ever so slightly purplish and the following day I was sick with a cold. It is the 4th time this winter I have had a cold/flu and every time comes with fever and chills. This never happened to me before. I can't just get a cold anymore. It's so much more this year - fever, chills, body aches (my hands and feet are the worst), headache, fatigue(real bad)....
Prior to this, I showed my doc a video I took of the Carpal Pedal Spasms I get(finally she listens. lol) and she was sure I had a parathyroid problem - those tests came back normal. 3x they have tested ANA with 1x positive and 2x negative. Maybe I was in remission?
One thing I know for sure is with every "flare" up, I feel worse and have more trouble recovering from it.
I go back and forth every day trying to figure out for myself what is wrong, but with this recent rash, I really wonder - could be Lupus this whole time?
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So here's something interesting. My rhuemy tells me last week she is at the end of what she can test me for. She won't give up on me but is really at a loss. So, today I see my family doctor and tell her I need to see someone else since the pain in my hands is severe now. She says to me that she already told me I have Lupus and that's what's causing my hands to swell. I tell her the whole story, how I've been tested 3x, the EMG's, the X-rays, Ultrasounds.... I said there must be another condition that's causing this. She looks through my paperwork and says there are only 3 conditions possible - carpal tunnel(negative 2x by 2 different doctors), RA(negative 4-5x through bloodwork as recent as last week) and Lupus. What my family doctor found interesting is that the positive was Ds-DNA. She says it's specific to Lupus but none of the other doctors I have seen have tested for that specifically. I confirmed today that my rhuemy has never re-tested for Ds-DNA. Anyone else out there have Lupus like this? After all these years, I can't believe this is the first time I'm being told this information but I still don't know if it even means anything. Doctors are so frustrating.....
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Oh yeah and one other thing that I'm not sure is related. They found cysts on my kidneys through my family doc. Never mentioned it to my Rhuemy cause I didn't think the 2 were related but now I wonder??
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434278 tn?1324709825
Yes, dsDNA is very specific to systemic lupus.  So sorry they are giving you the runaround.  
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Ive just been diagnosed with Lupus and have had painful muscle spasms in my legs at night which wake me up.It all started before meds but they don't seem to help them x
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I have been having twitching throughout my body that gets worse when I try to fall asleep. My rheumatologist started me on low dose neurontin and it has helped a lot with the muscle twitching. Magnesium supplements have also helped but the neurontin really did the trick.
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Soy can cause lupus flares.
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I don't have lupus and I get muscle twitching and my body feels shaky. I do however have anxiety and when I get stressed out it gets worse. I found something online called BFS benign fluctuation syndrome. It's pretty much caused by stress. I've gotten blood work and everything is normal. I did have a EBV (mono virus) infection last year before it started, so I don't know if they set it off or what. So in conclusion it may be the stress of having an incurable disease. I'm not anything close to being a doctor, I'm just a worrier that googles too much. I've learned to live with it.
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So crazy, I had mono last year and then this possible bfs as well. Not diagnosed with lupus (yet), but I e been suffering from muscle twitching and vibrating sensation especially when I sit still or at night. I also have anxiety. But it's all in my head right?
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This sounds so familiar.  I have not been diagnosed with Lupus or MS yet but they have been suspicious for 6 years.  my ANA Titer is 1:1280. I had shoulder surgery 9 weeks ago today and the past several weeks have been in what I usually call a flare of some sort. My joints in my hands hurt really bad. My neck and knees hurt and I am just really realy tired all the time. In my mind daily there are 100 things I want to do and should be able to do but physically I just can not keep up. I just don't know who to turn to anymore in the lines of specialist I have been to them all. The neurologist has been the one running the show and sometimes I feel he is just not looking in the correct places. I called last year to get in with a specialist who is an MD but practices integrative medication but my appointment is not until August.        
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What is ANA?."
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I have lupus and I been suffer with muscle spasm between my lower shoulder. I been taken muscle relaxer and it really not doing any good so I just deal with it until the pain go away. It there anything I need to do different. It's been 16 years and the pass 6 years I been dealing with muscule spasms.
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