I have recently had the muscles in my legs “freeze up-get stuck-not flex” and I can’t walk. I have sle and fibro, but my rhuemy said that isn’t a fibro symptom. This has been going on since october, but has just gotten worse and worse. Rheumy says blood work is all good except for vit D and a urinary tract infection. Emergency room told me I couldn’t walk cause I had a urinary tract infection. I keep getting spells of lost balance also and terrible muscle weekness, but it is always both sides of my body at the same time. I can’t get in with a neurologist till august! To be tested for MS! Has anyone else had these problems? Please help!
I am actually making an appointment to be seen by a nuro dr because of dizziness, having a problem with my balance and weakness. I get confused very easy and I'm having a hard time remembering the smallest things. I have never had anything as extreme as you. If you can not get in to see the specialist until August then I would find another Dr or go to another hospital and demand more help. It's not a urinary tract infection doing this. You should also start taking some vitamins.
I have Lupus but it took me years to get a proper diagnosis as they thought I had MS. The lower half of my arms and legs (muscles below the elbow + down & muscles below the knee + down) get spastic, painful and stiff. It seems to get worse in hot and sunny weather. I also have a difficult time wearing flip flops and am better suited to take walks in shoes. My toes seem to draw up which fatigues the long muscle along the front of my legs and makes it difficult/uncomfortable to continue walking any substantial distance. Not sure if this is different than what you’re referring to, but some of my Lupus neurological symptoms manifest/appear as MS like. However my spinal tap was negative (not in a flare when drawn) and while my MRI showed some plaques, it did not meet MacDonald criteria for MS. Well wishes to you.
My daughter has SLE and Vasculitis. She could not walk because of the Vasculitis. She takes Actemra for this. Have them check your IL6 levels. Hugs…you will find an answer!
I am certainly in no position to make a diagnosis, but my heart goes out to you as i can’t walk without a walker and then can only stand for 5 min at the very most. I couldn’t tell you if it were related to Lupus…but I’m sure others will offer their advice and words of wisdom to help you. My difficulty walking is related to my back, so I would offer that you might see a neurosurgeon…but that’s jmho. I say NS because just say by some wild chance you ever needed surgery, you wouldn’t need to go see yet another doctor…the very best to you, this journey is a long one…
Gail/angel
Symmetric suggests it is NOT MS, since MS is nearly always an asymmetric pattern of symptoms! It’s one of the key clinical ways they begin to try and diagnose it (my friend with MS presented with a “classic picture” before her diagnosis, asymmetrical numbness and tingling in her torso, asymmetric numbness and incoordination in hands, anxiety, and problems with cognitive function.) However, it’s still potentially quite helpful to see a neurologist to look for vasculits, or possibly transverse myelitis, which both happen in CNS-active lupus.
Please see the article by Cleveland Clinic (comtinuing ed for healthcare providers!) for more info and something from a highly credible source to point out to your rheumie who thinks its “not a lupus symptom”. As far as rheumies thinking CNS/neuropsychiatric (NPSLE) manifestations are rare, see the article by my own rheumie, Dr. Neuwelt (an NPSLE specialist) wrote to combat the sluggishness of the medical community in recognizing this significant part of the disease!
Cleveland Clinic Continuing Ed SLE focus piece (Neuropsychiatric section falls after Gastrointestinal under the “Clinical Presentation” section, but when I found this article I read the whole darn thing! Word of caution, if you’re the worry-more-the-more-you-read/hear type, DON’T mess around with this one! It’s written very dryly and technically for a doctor audience, in a way that makes everything sound like a really big deal when really they’re just being precise and highly factual… A totally different style than patient/family info and if you’re concerned where you’ll go with it, just print that section and bring it in with the line “I don’t know if this is relevant or not, and I didn’t read it myself, but a knowledgeable friend I discussed my concerns with suggested this article in regard to my symptoms”… Great way to get them to a) read it and b) not dismiss you as a self-diagnosing or somaticizing dissident who needs to pipe down and follow the good doctor’s expertise, etc… As you may be able to tell from my tone, I run into this issue ALL the time!):
http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/rheumatology/systemic-lupus-erythematosus/
Dr. Neuwelt’s educational highlight of NPSLE (also aimed at clinicians, and may require a Musculoskeletal Network login, which is free and connects you to lots of interesting current Rheum articles! Again, best suited for those who feel calmed down rather than worked up by this kind of straight dope… I certainly am, but I’m trained as a scientist and have always been an info-junkie nerd my whole life 
):
http://www.musculoskeletalnetwork.com/display/article/1145622/1396901
Happy reading, unless it will make you unhappy, in which case, happy printing and trying to get your docs interested in reading! Feel free to ask me follow-up questions here or by a direct message to me 
Brynn
Your GP can do the basic test for MS but if they thought it was really that...well in my experience they jump fast when they are worried it is something very serious.
So ask your GP to run some basic MS test...also any other that might show muscle issues or diseases. Go on MS form site and ask them ...could be in your ears your dizziness or dehydrated can also make your muscles not act correctly. Plus go along with UTI.
Hope it is just something easy as being dehydrated .... wish you well in finding out...to me no news is good news.
I agree about that network being one of best sites....but also agree not for those who might either worry or start to see the themselves as having the stuff you read about. But it has latest and one of best...also Rheum journals is another...sure Bryn reads it too. I also in love with science..Vet or Naturalist/ biologist was my dream...another Farley Mowat...Lupus got in the way but i still do much on my own. nice to meet another science lover.
Faladora said:
Symmetric suggests it is NOT MS, since MS is nearly always an asymmetric pattern of symptoms! It's one of the key clinical ways they begin to try and diagnose it (my friend with MS presented with a "classic picture" before her diagnosis, asymmetrical numbness and tingling in her torso, asymmetric numbness and incoordination in hands, anxiety, and problems with cognitive function.) However, it's still potentially quite helpful to see a neurologist to look for vasculits, or possibly transverse myelitis, which both happen in CNS-active lupus.
Please see the article by Cleveland Clinic (comtinuing ed for healthcare providers!) for more info and something from a highly credible source to point out to your rheumie who thinks its "not a lupus symptom". As far as rheumies thinking CNS/neuropsychiatric (NPSLE) manifestations are rare, see the article by my own rheumie, Dr. Neuwelt (an NPSLE specialist) wrote to combat the sluggishness of the medical community in recognizing this significant part of the disease!
Cleveland Clinic Continuing Ed SLE focus piece (Neuropsychiatric section falls after Gastrointestinal under the "Clinical Presentation" section, but when I found this article I read the whole darn thing! Word of caution, if you're the worry-more-the-more-you-read/hear type, DON'T mess around with this one! It's written very dryly and technically for a doctor audience, in a way that makes everything sound like a really big deal when really they're just being precise and highly factual... A totally different style than patient/family info and if you're concerned where you'll go with it, just print that section and bring it in with the line "I don't know if this is relevant or not, and I didn't read it myself, but a knowledgeable friend I discussed my concerns with suggested this article in regard to my symptoms"... Great way to get them to a) read it and b) not dismiss you as a self-diagnosing or somaticizing dissident who needs to pipe down and follow the good doctor's expertise, etc... As you may be able to tell from my tone, I run into this issue ALL the time!):
http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/r...
Dr. Neuwelt's educational highlight of NPSLE (also aimed at clinicians, and may require a Musculoskeletal Network login, which is free and connects you to lots of interesting current Rheum articles! Again, best suited for those who feel calmed down rather than worked up by this kind of straight dope... I certainly am, but I'm trained as a scientist and have always been an info-junkie nerd my whole life ;) ):
http://www.musculoskeletalnetwork.com/display/article/1145622/1396901
Happy reading, unless it will make you unhappy, in which case, happy printing and trying to get your docs interested in reading! Feel free to ask me follow-up questions here or by a direct message to me :)
Brynn
How is/are your potassium level and/or your electrolytes? Have them checked. This could be simple. The "routine" lupus lab tests do not necessarily include this.
My two cents.
Hello, sorry that you are having these problems. Falling is something that happens to me every now and then, the doctors say it will come and go!!! Sometimes I think that don’t know what cause this to happen, they just want us to take so many pills and it is not fair. I don’t like taking all those pills and they really don’t help to sovle the problem. But I hope that you feel better soon…Beverly L.
Ok, so magnesium, potassium and B vitamin levels came back normal. My dr’s office took blood work for muscle enzyme levels Monday but no one has given me that result and the rheumy said he wants me back in on tues. I went to the pain clinic Friday to get a spinal block for relief and they wouldn’t give me one! They are sending me to a neuromuscular specialist at K U hospital, who also by the way can’t get me in till September!!! Are u kidding me people! Let me throw something random out here at ya all…since I started back to work I had started drinking the green monster that tastes like cream soda to help shake off the cognitive fog and keep me awake in the mornings. My son drinks one every morning to start his day and had offered me one of his one day to help with the fatigue. I have migraines with the fibro and this time of the year but they have been really bad recently and so have my neuro symptoms. I was reading all the vitamins on the label out of sheer bordem from being laid out on couch…I avoid all food/drink with sucralose aspartme etc in it. Normally u know it’s that way cause it"s marked sugar free or diet. Sucralose-aka spenda gives me really bad migraines. “Hidden” in the middle of the list of the ingrediants on the bottle in very “small” print was the word sucraloser!!!
I meant to spell sucralose! I googled sucralose cause I couldn’t remember if it was one of the names for fake sugar. All these articles on sucralose poisening came up!!! Oh my goodness! It is my muscular problems! Last fall I started drinking the irish cream monster cause a chilled coffee fan coworker told me about it. I started having problems. I wonder if it is in all of the monster drinks. Shouldn’t they be required to say something is sugar free? I wonder if this is what is causing the problems…sucralose poisening…it’s like rat poisen in our food! Any one else have any symptoms with their lupus with this?
Lupus can have rare neurological side effects that could cause things like what your describing. Also, please take what you read about Splenda (sucrolose) with a grain of salt. It was tested very rigorously by the FDA before being put on the market. Having said that, many with autoimmune issues are much more sensitive to many things, chemicals included, than “normal” people. The only way to know for sure us to stop drinking it for a few days and see if it gets better. Since my diagnosis I have become very sensitive to caffeine. I used to be able to keep a diet coke by my bed at night and still sleep but now I get heart palpitations and can’t drink caffeine within several hours of going to bed.
Good luck! Hope it gets figured out soon!
That’s what my lupus does most of the time…is almost always in my legs. When it first started I didn’t have the strength to even stand on my own…after 2 years of taking medicine after medicine that didnt work long or at all, I took a big chance and joined the gym…focusing on my lower body strength. At first I thought I was going to actually die, but i forced myself to keep going and after a couple months I started noticing small changes. I could walk longer without pain,I could go up steps without trouble …5 months later was the true test when I could once again mount my 17 hand walking horse without using a mounting block …its been 9 months now, i am off all medication, Ive lost 50 lbs and usually feel great…there are still flare ups, and i have ro rest for a day or two but they are not as bad and many more good days in between
Good luck n just keep in mind to not let this disease rob you of your life nor define who you are.
I totally agree with you- we can’t let Lupus define who we are!! It is not fair. We are people who want to Live like everyone , a heathy and pain free life (normal)…smile…Beverly L.
I think you are great example of not giving into the disease!! I backpacked again after also working out daily and feeling much same as you describe. In the beginning it is horrible but then you to where get if you do not work out you feel not right. Plus endorphins it releases really helps.
I will be first to admit that i again need to get back in shape...and know losing weight will make my joints not hurt as much plus building muscles supports me better...you burn more calories.
so you are inspiration to us all!
Kelly said:
That's what my lupus does most of the time....is almost always in my legs. When it first started I didn't have the strength to even stand on my own.....after 2 years of taking medicine after medicine that didnt work long or at all, I took a big chance and joined the gym...focusing on my lower body strength. At first I thought I was going to actually die, but i forced myself to keep going and after a couple months I started noticing small changes. I could walk longer without pain,I could go up steps without trouble ...5 months later was the true test when I could once again mount my 17 hand walking horse without using a mounting block ...its been 9 months now, i am off all medication, Ive lost 50 lbs and usually feel great.....there are still flare ups, and i have ro rest for a day or two but they are not as bad and many more good days in between ;)
Good luck n just keep in mind to not let this disease rob you of your life nor define who you are. ;)