Question:
I’ve had lupus for 17 years and I have been very fortunate trip with this diease has been easy. Now I have some new symptoms. My hands shake when I try to do small motor stuff. And I am having trouble walking in a straight line. At times I feel like blood is rushing to my head and I occassionally see large gray spots. could I be having problems with CNS? does anyone have any of these problems?bj
Response:
Hi BJ. Yes, I have the shaky hands, not all the time, but a lot. Walking in a straight line, one foot dropping and leg lagging behind, confusion with words and letters, trouble thinking, all sorts of things. Not all the time, but always worse when I’m tired. Docs have done a couple of MRIs to make sure it’s nothing like MS or a tumor or something. More rest = fewer symptoms most of the time. Docs want to do some "neuro psych" testing to see just what it’s affecting and how, but the insurance has prevented it so far… Maybe this is why they call us "loopies." @:-[ Rebecca
Response:
Hi BJC, I am a BJ too, so I hope folks don’t get confused. Your symptoms could be CNS related. I have problems like that too. I was also thinking that it could be neurological problems caused by pernicious anemia. Has anyone checked you for that. It is autoimmune and I have that as well. I also want to extend a warm welcome. BJ-Sk. Canada "BJCeder" <bjce…@aol.com> wrote in message
news:20020907000605.10735.00001955@mb-cp.aol.com… – Hide quoted text — Show quoted text -> I’ve had lupus for 17 years and I have been very fortunate trip with this > diease has been easy. Now I have some new symptoms. My hands shake when I try > to do small motor stuff. And I am having trouble walking in a straight line. > At times I feel like blood is rushing to my head and I occassionally see large > gray spots. could I be having problems with CNS? does anyone have any of > these problems?bj
Response:
I called to make my six month appointment, my appointment isn’t until the middle of November. Maybe I should call and see if they can get me in on a cancelation. I had a cervical fusion this summer and the neurosurgeon did an mri for the symptoms that I’ve described. the mri was normal. He did want me to go to a neurologist, but if you’ve ever been to one of those guys they aren’t the nicest. I have alot of faith in the doctor I go to for my lupus. Now that I have talk here I feel like I’m not completely crazy.thanks BJC
Response:
BJC, Asking to be put on a list at the doctors for a canceled appointment is a very good idea. Hopefully you can get in sooner but you will still have the Nov. appointment. It is always frustrating to wait and wait and wait for the specialists to have a slot for us! Gee they may have 100’s of patients but we are important to ourselves and when we are ill it is now not months down the road. Always made me feel like I had to make an appointment to be ill in 6 months. LOL We always do our best around this group to make sure everyone knows that they aren’t alone, they aren’t crazy, and that if an answer is out there one of us will usually find it (most of the time it is J with her web searches) some of us just happen to have personal experience with something so we have an answer or a thought without all of the scientific stats to back it up. Hope that you stick around and join in the discussions. Some are off the subject of Lupus, they are discussed to bring humor and laughter into our life or just to let others know a bit more about ourselves and our hobbies etc. Everyone here is dealing the best they can with a illness that is theirs or belongs to someone they love…..so we have a common bond with the illness and then we grow to have a bond with the people on the group that also share in the rollercoaster ride of life with Lupus or a related illness. Welcome to the group. Sherry
Response:
Hate to break it to you…you probably are crazy…just not as crazy as the rest of us on this newsroup! Lyndal takes one to know one :) "BJCeder" <bjce…@aol.com> wrote in message
news:20020907131459.29607.00000781@mb-bg.aol.com… – Hide quoted text — Show quoted text -> I called to make my six month appointment, my appointment isn’t until the > middle of November. Maybe I should call and see if they can get me in on a > cancelation. I had a cervical fusion this summer and the neurosurgeon did an > mri for the symptoms that I’ve described. the mri was normal. He did want me > to go to a neurologist, but if you’ve ever been to one of those guys they > aren’t the nicest. I have alot of faith in the doctor I go to for my lupus. > Now that I have talk here I feel like I’m not completely crazy.thanks > BJC
Response:
Sherry Thanks for the note, it helps to have people to talk to that can give understanding advice. I’m not one to share how I really feel with people around me. Thanks for being here for me. BJC
Response:
Hi BJC, I picked up on what you said about not sharing how you really feel with people close to you. That is something I know a lot of us here do. I think we try to keep a stiff upper lip, as it were. I also don’t want to drag people down with details of my illness. That is why this group is so great. We can " let it all hang out." Feel free to do that. BJ-Sk. Canada "BJCeder" <bjce…@aol.com> wrote in message
news:20020908071337.29659.00001160@mb-bg.aol.com… – Hide quoted text — Show quoted text -> Sherry > Thanks for the note, it helps to have people to talk to that can give > understanding advice. I’m not one to share how I really feel with people > around me. Thanks for being here for me. > BJC
Response:
Hey Doctor, I ain’t crazy LOL. Just a little goofy maybe, weelllllllll ok, I am MORE than goofy. I just read your post BJCedar, hello and welcome to the group. great place to be IF you have to be. Has yourr neurologist mentioned to you a thing called peripheral neuropathy? I also had a cervical fusion done, and I was told by my neuro doc that those feelings of numbness and like your are having mild tremors was a neuropathy type problem. But if you are having trouble walking, I suggest you get ahold of that doctor and tell him. I really think a neurologist is your best bet to help you here. IF you have had previous problems with your neck then maybe you have some type of disk problem going on in lower back. Was your MRI of the brain? I hope you do see a neurologist. IF you did not like that one, because of your comment about not likeing them type LOL Is there one near you that has a better bedside manner? LOL one that will listen and be attentive. LIKE OUR DOCTOR HERE. good luck and keep us informed And with lupus you never know. we are all different. And believe me we all have different symptoms as well. It is necessary for a doctor to determine that for you. keep me posted janers
Response:
Hey, *watch* it, Doc – I ~resemble~ that remark<g>! "Lyndal Parker-Newlyn and Phill Newlyn" <l.p.new…@bigpond.com> wrote in message news:QVFe9.27537$g9.78461@newsfeeds.bigpond.com… – Hide quoted text — Show quoted text -> Hate to break it to you…you probably are crazy…just not as crazy as the > rest of us on this newsroup! > Lyndal takes one to know one :) > "BJCeder" <bjce…@aol.com> wrote in message > news:20020907131459.29607.00000781@mb-bg.aol.com… > > I called to make my six month appointment, my appointment isn’t until the > > middle of November. Maybe I should call and see if they can get me in on > a > > cancelation. I had a cervical fusion this summer and the neurosurgeon did > an > > mri for the symptoms that I’ve described. the mri was normal. He did want > me > > to go to a neurologist, but if you’ve ever been to one of those guys they > > aren’t the nicest. I have alot of faith in the doctor I go to for my > lupus. > > Now that I have talk here I feel like I’m not completely crazy.thanks > > BJC
Response:
I called my rhuemy’s office this morning and asked to be put on the cancellation list. My appointment is for this Thursday morning. BJC
Response:
Good. I am glad that you won’t have to wait too long. I hope you will let us know how it goes. Good luck. BJ-Sk. Canada "BJCeder" <bjce…@aol.com> wrote in message
news:20020909200613.29682.00001644@mb-bg.aol.com… – Hide quoted text — Show quoted text -> I called my rhuemy’s office this morning and asked to be put on the > cancellation list. My appointment is for this Thursday morning. > BJC
Response:
Way to go! That is great. Keep us all posted on the how the appointment goes. Sherry
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