I have been dealing with "strange" occurances in my body for about 4 years now. My Rheumie thought Lupus about 3 years ago because my symptoms and family history but then said no after some testing. Because of neurological symptoms, I was seeing a neuro who dismissed everything I said for about a year and half. Because of joint symptoms, I went back the rheumie. He is now thinking Lupus again and warned me that he "has plenty of Lupus meds to treat me." I go back to see him in October.
Anyway, over the past few weeks my muscle twitching spasming and weakness as well as numbness has been hyped up. There is not a day that I do not have the spasms. They are more frequent and "bigger" (stronger) then ever before. They occur everywhere from my face to my neck to my arms, legs, stomach, chest, behind, feet, ankles, toes, and fingers. I have laid across the bed with my feet hangin over and the muscles in my ankles caused my feet to jerk back and forth. It feels like water is cascading down my legs and there are bubbles as they water passes by my knees.
I keep getting sudden headaches that are sharp pains on the sides of my head. They come and go as they please. I also cannot stop using the wrong words. My children find it so funny but I find it so frustrating. I do it so often than now it is a family joke and I am the butt of it. I know they don't mean any harm so I don't get angry with them but I feel like my brain is slipping. I could go on but you get the picture.
Here is my dilema. As I mentioned, the neuro thought..."crazy" and dismissed everything. And my rheumie thinks Lupus. I want to get another brain MRI but I don't know if I can take hearing that there is nothing wrong when my body is telling me otherwise.
Also, has anyone had a sleep study. My rheumie requested it because I have trouble sleeping at times. Since I have twitching and spasms at night, do you think the sleep study picked that up.
I don't know of what help I can be to you, but your post has helped me. I too, have had and still do have the muscle twitches, mine even effect my head making me shake my head either in a yes-yes pattern or a no-no pattern. I have gotten the same "crazy" speach from my neuro or should I say the several former neuros. My MRI showed clear for MS almost a year ago and I too want a nother one, but fear the "crazy" speach again. We both know that there is something wrong with our bodies... why can't the doctors see it too. Can someone actually want to 'Twitch" all the time to get attention...one doctor put in his notes that I was faking it to get disability... so Disability denied me. I know that we are not... we just have to keep the faith that something will be figured out soon. I will keep you in my prayers. Thank you for your post... at least I now know that I am not alone.
Your post has helped me too. My MRI was "clear" too. I am so angry with myself because ordinarily I am very upfront and forward. I guess you could say a no holds barred kind of gal, but when it comes to docs I am such a wimp. I have never actually seen my results so I don't know what the report actually said. For all I know, it could have been something there that she didn't feel was important enough to make mention of. Also, when I asked her in January about another MRI (after a year from the first one), she said I didn't need it. Now that I think about it, is she paying for the darn test? Whether she thinks I need it or not shouldn't be the issue. I want it, I'm insured for it, so why can't i have it! Dang this makes me mad!
Well, I too will keep you in my prayers. I was having the no-no twitch a few years ago but it has subsided.
I completely understand your frustration. I think the only reason why the neuro kept ordering the MRI's on me is since they had subjective proof (I had afferant(sp?) pupil defect) which is a fancy way of saying my pupils would not react right, which ofcourse is NOT something I could face or manufacture in any way. I also had a neuro opthomologist confirming I had optic neuritis in both eyes, which is a hallmark MS problem. In my case it wasnt MS but lupus and it isnt very common in lupus so understandably they went in the other direction first. I had 3 MRI's in 18 months which were ok..but the last one did show lesions but there is apparantly a difference in MS lesions and Lupus CNS lesions. But even with the proof of my optic neuritis I still dealt with the arrogance of the neuro.
You can get copies of your MRI's and take them for a second opinion. That is what I ended up doing. I took them to UT Southwestern and they were the ones that kept on and did find the lesions later.
FYI, the second neuro will want the actual mri films. You just call the place that did the MRI and they will give them to you. Store them between your mattress and it will protect them from the sun and getting bent. Also, make sure if you are going to do it, do it all. Not just the brain but the spine as well. My spinal MRI also showed problems. And an LP, which admittedly is no fun, but it will also rule out problems as well.
Blessed4Life, I had unnerving neuro-like problems prior to Dx & treatment, but they may not be that close to what you've been having. It felt like "little critters" were racing about under my skin surface, or like tiny electrical charges gone amok. I also had show-stopping headaches, the kind that are so bad that you can't move a muscle or tolerate light.
Yet it turned out that I didn't have CNS involvement, just a milder case of SCLE lupus (featuring anti-Ro) with B-12 anemia (among other problems). For what this is worth... So I hope you also end up with similarly "milder" explanations for what you describe! Sending you my best wishes, Vee
Thanks for clearing that up for me, Erin. I will order the films and press the new neuro to do both the brain and spine MRI's. Wish me luck!
Vee, my symptoms are sometimes similar to yours. I am blessed that the headaches though not the easiest thing to deal with are not as bad as you describe and only last a few minutes. I have learned that if I rub my head in the area where the pain is the worst that the pain tends to subside. Rarely do I have to take pain meds specifically for the headaches. My biggest concern is the CNS activity. My body is turned on high all the time. Jumping, jerking, vibrating, twitching! I don't know what is worst, the feeling that my legs may fall out from under me or having my behind twiching and jerking while I'm sitting on the toilet! LOL
Michelle, have you been tested for Lyme disease? The symptoms that you are describing can be related to Lyme. I was misdiagnosed for 8 years, Me, my husband and my son have Lyme and we get the twitching and jerking and believe me we are not faking it. Sometimes I get a feeling of hot water running down my legs or a hot feeling on the bottom of my feet, like walking on hot concrete, it is wierd. Check out the Lyme board for symptoms. Lyme is called the Great Imitator because it can mimic several other diseases and is often misdiagnosed. Also most reg. doc's run an Elisa and it is 70% inaccuare (false neg) there is a Lab called IGeneX Labs, you can order a kit from them, take the paperwork and kit to your doctor and insist that they test you with the Western Blot IGG & IGM. IGeneX reports antibody bands that are specific to Lyme, all you need is one positive band to prove you have been exposed to the Lyme bacterium. You can ask ?'s on the board and we will be more than happy to help you, and Ticker will post a list of symptoms and resources if you post. Sincerely Sarah