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Kimmy
07-23-2008, 02:19 PM
Hi everyone,
I've been having some neurological symptoms alongside my lupus. I have decreased sensation in my hands/feet, burning sensations in my legs, eye pain, among other things. I had an MRI done of my brain and spinal cord. The results showed several UBO's (unidentified bright objects) and that my bone marrow was shifting (?) on my spinal cord. Has anyone experience something similar, or does anyone have similar neurological symptoms? My rheumy and neuro say that these abnormalities can be several things so they want to wait to see if any new symptoms develop. If anyone can offer any insight, I'd be truly appreciative.
Thanks!
Be well. :)

KathyW1958
07-23-2008, 04:09 PM
Hi Kimmy,
I am wondering if they have checked you for Sjogrens along with your Lupus. I know that I have something simular to what you have going on and I have both Lupus and Sjogrens. I also have recently been diagnosed with Megaloblast Anemia (Pernicious Anemia) and now require Vitamin B12 shots each month. I also have Celiac Spru. I am just wondering is all. Welcome to the forum. There are a lot of nice people that come here and they have a lot of knowledge.

Hugs,
Kathy

Kimmy
07-23-2008, 04:15 PM
Hi Kathy,
Nice to meet you :)
I don't think they have tested for Sjogrens, other than having been asked if I experience dry eyes and mouth. I was also diagnosed with Pernicious Anemia about three weeks before I found out I had Lupus. I'm also taking the injections, fun aren't they? :wink:
The neurologist doesn't believe that my symptoms are related to the anemia. He, along with my rheumy and the lupus neurologist, are just waiting to see if new symptoms develop that would provide more answers. At first, I went through a battery of tests to rule out MS.
Thank you for your reply, any insight you can offer into dealing with these neurological issues is greatly appreciated!
Kimmy

KathyW1958
07-23-2008, 04:40 PM
Hi Kimmy,
Oh yes the shots for PA. Hmmmmmm not good for sure :( . I wish that the pills would work, but was told no way. Have you asked your doctor about taking Neurontin? I took that for a while, but not at the moment. I have Neuropathy problems. They are taking a wait and see attitude with me too. If you get any answers let me know ok.

Hugs,
Kathy

Kimmy
07-23-2008, 04:49 PM
Hi Kathy,
One of my symptoms is peripheral neuropathy. Is the neurotonin supposed to help with that? None of my doctors have mentioned it before. Since my diagnosis in April, I've been on prednisone, plaquenil and the b12 shots.
I hope things get better on your end. The wait and see approach tends to worry me a little, but I have good relationships with my doctors, so I trust them.
Be well!
Kimmy

mnjodette
07-23-2008, 05:27 PM
Kimmy, neutontin is often used for peripheral neuropathy. I was on that for about a year or so after my neuropathy developed. It seemed to decrease in effectiveness after that, and I gradually quit taking it. You might want to ask your neurologist. Could be that they want to wait on the medication until they are sure what the other neurological symptoms are all about. I hope you're doing better today.

Jody

laurid8967
07-24-2008, 12:20 PM
Hi Kimmy,
I know a little about neuro symptoms and tests, as for a long time they thought my problem was neurological. I have all the symptoms you mention, as well as seizures, vertigo, etc. The UBO's could represent alot of things, such as lesions as seen in MS (these are what scars the myelin - sclerosis means scars) or lesions seen in small srokes or TIA's (ischemic lesions). I have these as well, and they werent sure what they were, but temporarily ruled out MS.
What they could be doing, however, is seeing if you develop more symptoms, and when you do, they do another MRI to see if you have NEW lesions (bright spots). This could mean MS. Sometimes, they can be attributed to age, and sometimes they dont know WHAT they are. They are not uncommon. This does not mean you HAVE MS, its just what they look for if they are considering it.
My last MRI showed the same thing, and I havent had one since (5 years ago) and Im OK. You could ask them what they are leaning towards. What other tests did they do to "rule out" MS? An MS diagnosis is difficult (like lupus) as it is an autoimmune disease as well. Standard tests are the MRI - to look for active/old lesions. (Note: they have to be in the right place however). MRI's are done on both brain and spinal cord. Also, there is the Evoked Potential Test, which measures nerve condution from the brain to the nerves (measure for delays, etc). A spinal tap can also be done to look for oglinical bands (presence indicates probable MS, but lack of bands does not rule it out). They also look at your medical history, as symptoms need to come and go and come again at least once in a 6 month period. (relapsing/remitting MS).
Also, there are official Dxs of "possible MS" , "probable MS" and "definate MS". MMeaning, someone can have an official Dx of possible MS.
Im not a doctor by any means, so this info is just what Ive learned through my own experiences, and Im not saying you have MS at all. But, usually the UBOs CAN indicate the possibility of it.
Hope this helps
Lauri

Kimmy
07-24-2008, 02:29 PM
Hi Lauri,
Thank you for your post! I don't know for sure if they've completely ruled out MS. I think you may be right when you say they are waiting to see if other symptoms develop. At first viewing of the MRI scan, they felt comfortable saying it was lupus more than MS. But I only got the news about the "abnormalities on the same MRI just recently (almost 2 months after the scan). I had done research on MS and know it well as my boyfriends mom has it, and I am planning on asking the neurologist where the UBO's are located. I had an EMG done (ouch!) and it indicated some nerve "irritation" but the scores weren't enough to indicate severe damage. I have not had a spinal tap. I'm seeing the Lupus neuro in September for a follow up and will be passing a bunch of Cognitive Evaluations in two weeks so hopefully they'll have more answers soon. I'm 25 and I have to say, these last few months have been a crazy whirlwind of information and lifestyle changes! I admire everyone who has to deal with chronic illness because it really requires a lot of strength and perseverance!
Other than medication, have you found any tricks to deal with the symptoms?
Be Well!
Kimmy

laurid8967
07-24-2008, 04:21 PM
Hey Kimmy -
You're very welcome. I know alot about it, because I was CONVINCED I had MS years ago. (There are times my neuro symptoms are so bad I still think its MS and not lupus!). As far as treating neuro symtoms - thats a tough one. Pain, of course, can be treated, but as far as tingling, numbness, etc usually they will prescribe Neurontin. I didnt like it because 1) At that time, I was on alot of narcotic pain meds, and I didnt want anything else, and 2) I gained serious weight (at the time I was like 105 lbs - I could have used the weight, but not in my distorted eyes).
I will say this, though, my neuro symptoms have been MUCH BETTER since I went on the prednisone. It really decreased the burning, numbness, tingling, etc. My doc said because I probably had some inflammation in my nervous system. and the steroid reduced it. It is such a huge BUMMER that prednisone is bad for us....it works SO WELL...and fast, too! I am a fan of it - thats all. Anything that can improve excrutiating pain and debilitating fatigue in a few days is OK with me. I know I cant stay on it, though, and Im bummed because I really dont want to go on Imuran. It just sounds worse than the prednisone. I havent had TOO many side effects with the pred. either. A fat face, yes, insomnia at the beginning, but thats it, really. No weight gain...Its HORRIBLE for your bones, though, and I already have osteopenia (begin of osteoporosis), so my doc wants me off of it.
Oh, Kimmy, to be 25 again!! Im sorry that your sick this young, but, believe it or not, its a good thing you got your Dx now. You will have a far less chance of organ involvement the sooner you get treated. It sucks, though, I know - at ANY age.
So, Im not sure if your on prednisone or not, but you should have your doc try a tpaered dose to see if it helps with your neuro syptoms. You may be in a flare, and the pred maybe can get you out of one, you know?
I hope you get some answers soon. And, as you know with the MS, try not to even think about it (haha). If you do have it, it could be YEARS before it rears its ugly head!! Im a fan of the saying, "First thing First"..so ...lets deal with your lupus first!!
Hope you are feeling better soon. Please let us know how you are doing!!
Love Lauri

Kimmy
07-24-2008, 04:42 PM
Hi Laurie,
I know what you mean. When I went to consult a doctor this year, it was because I had those symptoms and I was sure I had MS. I've had "cycles" of disease activity for the past three years. The symptoms would come and go and this year was the worse. In April (when I was dxed with Lupus) I was hospitalized due to pericarditis and a rapid heartbeat along with high levels of inflammation and high fever. I was put on a dose of prednisone which was stable for about 1.5 months and then weaned off. The dr. won't put me back on the steroids because I've had bad withdrawal symptoms (despite having been weaned off very carefully) and because it caused my cholesterol to shoot up. I am very careful with what I eat and am a healthy weight. I have a new "symptom" which is a strong pressure in my left forearm which causes the arm to be numb and tingly. The Dr. attributes this to the lack of steroids. Has anyone else had bad effects due to stopping steroids (even when its super controlled)?
I know what you mean about the steroids. I remember at my highest dose, I felt like superman! I wasn't sleeping much, but I had so much energy and the chest pain and shortness of breath was so much better. Now that i've been off of it, things are coming back (chest pain, fatigue, mouth and nose ulcers...). I know Lupus is variable, but is it possible to "control" a flare with meds and then go right back into one once the meds have stopped?
Lots of questions, I know! I greatly appreciate any answers I receive. I am thrilled about having found a great group of people with whom I can talk to who have actually gone through the same thing!
Hugs!
Kimmy

laurid8967
07-25-2008, 07:15 PM
Hey Kimmy,
Yes, you can go right back into a flare when the meds are decreased. Thats what happened to me this winter - twice - and they decided to keep me on it for a while. Its now been two months, and though I dont feel as well as when I first went on it, I feel MUCH better, and am able to function.
Honestly, just those three days off of the meds made me feel worse - neuro symptoms started, that pain in my hips started again, and I had pain in my back. Trouble urinating again, too. I have to go all the time, but just a little comes out. I sit and wait, for a long time sometimes, (Ive literally fallen asleep on the toilet!!) and then I can go...then it stops, I wait again, then I go again. Once I get back up to bed, within a couple of hours at the most, and I wake up having to go again. This got much better on the prednisone, but kicked up again this week. Also, forgot all about how bad the jaw pain, temple area hurt...cant even chew some food it hurts so bad. I guess Ill just have to eat ice cream...lol!!
Kimmy, I hope you get some relief soon. I notice my neuro symptoms respond just like any other symptoms with lupus...If I take good care of myself, they are less, and when Im in a flare, they start again.
Ive never heard of long=term withdrawal with prednisone. Maybe some others have here...Take care
Love Lauri