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Old 11-10-2009, 08:10 PM   #1
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Unhappy Probable Lupus Diagnosis plus nervous system involvement?

Hello everyone,

I'm new to this board. So I've battled with crippling fatigue and pain for a few years now. I was slapped with the label of it's just Fibromyalgia several times. Since then I've developed slightly elevated protein levels, kidney stones, digestive issues (vomiting and diarrhea), migraines, sensitivity to sunlight to name a few.

So my doctor has tested me for the lupus antibody panel. It came back positive once, she waited a few months and retested and it came back positive again. She hasn't made the official diagnosis, but is swaying towards it.

So anyway, more recently (last couple months) I've had a lot of neuro symptoms. Spacing out, blurred vision, near-fainting, coordination problems, depth perception and location of body parts problem, stumbling, stuttering, etc. She is sending me for an MRI and eye doctor. If nothing is found there she is sending me to a Neurologist.

So I never thought lupus affected the nervous system, but I have read recently that in can in fact do so.

Anyone else know about the possible connections of lupus and nervous system problems? I'm a bit confused about this, but the possibility that my body is attacking my nervous system doesn't leave me very happy at the moment.

Thanks,
Liz

 
Old 11-10-2009, 09:37 PM   #2
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Re: Probable Lupus Diagnosis plus nervous system involvement?

i will be very interested in seeing the responses to your post considering i am having many of the same neuro symptoms you described, and they have been attributed to cervical spine issues. i have not yet been tested for lupus, but am anticipating it soon.

wishes of good health to you.

 
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Old 11-11-2009, 10:18 AM   #3
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Re: Probable Lupus Diagnosis plus nervous system involvement?

Liz, hi. I think it's possible to have symptoms are neuro-like, without having "big" CNS involvement. BTW, anemia is another culprit for dizziness, tingling, etc. "Big" CNS involvement is possible in lupus, but it's not a given: many people with lupus don't have it, and same goes for APS ( = anti-phospholipid syndrome).

The "stickies" at the top of the thread list have good info & are a good place to start building up understanding gradually.

Do you know which standard & specialized tests came back suggestive of lupus? And which were positive multiple times? And, is your dr. a rheumatologist? I'm curious because the rheumie I finally saw was stunned at how many tests/findings my local drs. compiled but took NO ACTION ON; he wondered what they were waiting for. I'm not saying your doctor's waiting doesn't make sense (she's a doctor, I'm not), only asking if her waiting makes sense to YOU, given what you know & have been told by her. I hope you post more soon. Bye & best wishes, Vee

 
Old 11-11-2009, 03:54 PM   #4
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Re: Probable Lupus Diagnosis plus nervous system involvement?

Hi Vee,

I actually take a multivitamin daily (one with iron) to ward of Anemia, which seems to help since the last several blood tests I've had have said I'm not anemic anymore. I totally agree though that Anemia can cause a lot of problems as well.

Let's see the blood work that has come back positive twice is my Antihistone on the lupus panel. I also have low white blood cells and elevated protein...those are the ones I know of. I don't have all of my bloodwork results, so not sure if there is more in there or not, but I do know I have a couple general bloodwork abnormalities as well. So I dunno, with my symptoms and all I would say it makes sense, but I guess she is just trying to make sure, which I also understand.

Thanks,
Liz

 
Old 11-11-2009, 08:57 PM   #5
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Re: Probable Lupus Diagnosis plus nervous system involvement?

I am going to agree that if Lupus is suspected to see a Rheumatologist. I do have some neuro-type symptoms as well but I do have cervical spine issues and FMS as well. So it is kind of like the chicken and the egg theory with me. I did see a neurologist and she found nothing wrong neurologically, but I do see a Sleep Specialist Neurologist, so there must be something neuro going on! In particular there is an article in the website that is referenced in the sticky posts at the top of the thread that addresses the "neuro" like symptoms, so I think it is pretty well known that some neuro type symptoms can be seen with lupus (and FMS as well) I would see the Rheumatologist and put your mind at ease. At least then you can arm yourself with the information needed for your care. Let us hear how you are doing.

 
Old 11-12-2009, 04:48 AM   #6
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Re: Probable Lupus Diagnosis plus nervous system involvement?

Liz, good morning. Various autoantibodies (etc.) are seen in lupus, with varying degrees of "specificity". The stickies list the only two considered VERY specific to SLE: anti-ds-DNA and anti-Sm. BUT, as it was explained to me, others are possible, too; problem is, they're "fuzzier" because they're seen in multiple conditions.

Did your dr. discuss the meaning of anti-histone? (And you said you think others may have been found, too?) You might want to make a habit of asking for copies of your labs.

The fuzzier the labs, the bigger the challenge! Patient thinks dr. is dragging his feet or is incompetent, while dr. KNOWS he needs to nail down a Dx SCIENTIFICALLY. I saw two examples recently. A relative had autoantibodies rarely seen in SLE. She was finally Dx'ed with dermatomyositis, with possible drug-induced lupus (DILE). When she stopped her cholersterol med, her myositis improved but her skin problems remained. The other is still up in the air: his rheumie is considering both DILE (he takes BP & cholesterol meds) and SLE.

Both people finally saw metro rheumies affiliated with huge teaching hospitals, thinking that such drs. see a little of everything. (I did, too, and got answers quickly. The "fuzzy" aspect for me was that I fell in a tiny subgroup of lupus, positive anti-Ro but negative ANA. I suspect my local drs. had never seen that rare possibility firsthand.) Anyway, please know you're not alone, and stay in touch, OK? With my best wishes, sincerely, Vee

Last edited by VeeJ; 11-12-2009 at 04:49 AM. Reason: syntax

 
Old 11-12-2009, 09:15 AM   #7
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Re: Probable Lupus Diagnosis plus nervous system involvement?

Hi everyone and first I want to thank you all for all of your responses! It's so nice hearing everyone's input on this!

So first, I have been doing my research more on this "Anti-histone" value that has come back positive on my bloodwork twice now. I actually noted that neuropsychiatric lupus (which actually describes similar problems to what I've dealt with) can have a strong positive for the Anti-histone value. In fact it seems to almost correlate specifically to it. Of course with all internet research, "facts" always have to be questioned as far as usefulness, but I find this very interesting.

I'm going to an eye appointment tomorrow since I'm still having a lot of vision problems, so we're gonna make sure my eyes themselves are okay. I'm crossing my fingers for nothing wrong with my eyes to be honest. So we'll see what the doc finds there. Then I go for my MRI next week and if nothing there we're gonna see a neurologist

Also, I wanted to note I had a really bad experience with a Rheumatologist, so I'm having a hard time being able to go back to one. But I do realize I need to go so I'm going to do some more research on the ones in the area and see if I can find one that might be more helpful for me.

Thanks again everyone!

 
Old 11-12-2009, 09:33 AM   #8
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Re: Probable Lupus Diagnosis plus nervous system involvement?

Liz, I had mind-blowing experiences with gastros, urologists, rheumies, Gyn's, 6+ dermies, and several horrible hospital stays. But if your reading suggests that anti-histone seems to place you in rheumatology, then I hope you leave no stone unturned looking for a different rheumie to try. I expected the metro drs. to be rushed, rude and awful; but my preconceived notions were dead wrong. GOOD LUCK! Vee

 
Old 11-12-2009, 12:25 PM   #9
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Re: Probable Lupus Diagnosis plus nervous system involvement?

I want to add that I saw 2 other Rheumies before I found one that could help me. I actually went through a phone book and called and inquired of the doctor's specialties until I found one that dealt with FMS. It was his testing that confirmed I had lupus as well as fibromyalgia. I want to add that the previous two were referrals by my primary care physician. so it only goes to show, sometimes our own legwork pays off. I do hope you saw an opthamologist today as if they should place you on plaquenil, it is advised to have a baseline and be monitored closely for any eye changes. I have been on Plaquenil over two years and no changes seen at this time. BTW from the literature, it shows a discontinuance of the med if it should cause a problem is warranted and usually there is no permanent damage. That may be more info than needed.

 
Old 11-12-2009, 01:56 PM   #10
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Re: Probable Lupus Diagnosis plus nervous system involvement?

Quote:
Originally Posted by VeeJ View Post
Liz, I had mind-blowing experiences with gastros, urologists, rheumies, Gyn's, 6+ dermies, and several horrible hospital stays. But if your reading suggests that anti-histone seems to place you in rheumatology, then I hope you leave no stone unturned looking for a different rheumie to try. I expected the metro drs. to be rushed, rude and awful; but my preconceived notions were dead wrong. GOOD LUCK! Vee
*nods* I've been through a few different ones myself. Just for some reason some of the things the Rheumatologist said to me about my personal life choices were harsh. But anyway, I do understand the necessity to see one. The Anti-histone definitely lands me in Rheumatology and from the different illnesses I've read it can be indicators for, none of them fit except lupus. The other illnesses just didn't match up at all with my symptoms.

So I guess we'll see. I'm trying to be patient with my doctor right now with ruling out certain things and whatnot, so hopefully after the eye appointment and MRI and meeting with a Neurologist we can move closer towards a diagnosis and I'm praying treatment before some serious damage can be done.

Thanks again

 
Old 11-12-2009, 02:01 PM   #11
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Re: Probable Lupus Diagnosis plus nervous system involvement?

Quote:
Originally Posted by goldyfm View Post
I want to add that I saw 2 other Rheumies before I found one that could help me. I actually went through a phone book and called and inquired of the doctor's specialties until I found one that dealt with FMS. It was his testing that confirmed I had lupus as well as fibromyalgia. I want to add that the previous two were referrals by my primary care physician. so it only goes to show, sometimes our own legwork pays off. I do hope you saw an opthamologist today as if they should place you on plaquenil, it is advised to have a baseline and be monitored closely for any eye changes. I have been on Plaquenil over two years and no changes seen at this time. BTW from the literature, it shows a discontinuance of the med if it should cause a problem is warranted and usually there is no permanent damage. That may be more info than needed.
*nods* so I just need to do my research and see who would be the best match for me in the Rheumatology then. I think I only have three or four my insurance covers, so hopefully at least one of them will be decent. I have the confirmed diagnosis of Fibromyalgia as well, I've battled it for I think about five or six years now. But it doesn't come as a surprise to me with the Lupus, it makes complete sense and fits the majority of my major problems, so I hope we can get to treating it soon and get it more manageable. Especially with the possibility of kidney involvement, since I've fought with that this year, I hope my doc doesn't wait too long to get treatment going. And thanks for the info on the medication. I'll take any information I can get to help.

Thanks!

 
Old 11-13-2009, 06:54 PM   #12
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Re: Probable Lupus Diagnosis plus nervous system involvement?

Well luckily my eyes checked out healthy (except the astigmatism and nearsightedness I've had forever). I'm so glad about that. I was afraid I was going to lose my vision. The eye doctor agrees this is something neurologic causing the blurred vision. So now off for the MRI next week and see if it shows anything.

 
Old 11-17-2009, 08:11 PM   #13
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Re: Probable Lupus Diagnosis plus nervous system involvement?

If you have not read the sticky posts at the top of this thread, please look particularly in the thread re: lab results as someone has posted a website (it is not highlighted, so look for it in the text) that has wonderful info regarding the co-existence of FMS and lupus. They state that 25% of lupus patients also have FMS. It seems to me that you are just now experiencing the same things I have been through the last 6-8 years. As I was initially diagnosed with FMS and went through countless medication trials, PT, epidurals and trigger point injections with no lessening of symptoms. I feel that it was impossible to get the fibro under control until something was done about the lupus. I still have pain daily but as I have had cervical surgery and lingering results of that insult, and multiple medication allergies (anti-depressants, most pain meds, and steroids, and some antibiotics and anesthesia) I have been a challenge. It did take some time to get my aches and pains under some kind of control. I have good days and bad days, but overall I feel better on the lupus meds than on any FMS treatment I was subjected to.

Also I do a lot of reading at the Lupus Foundation website. They have very good easy to read info for patients. I do hope the MRI is fine and that you get in to a Rheumatologist and get under some treatment soon. Please let us hear how things come out for you.

 
Old 11-19-2009, 04:36 AM   #14
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Re: Probable Lupus Diagnosis plus nervous system involvement?

Liz, just to say GOOD LUCK with the MRI. Thinking of you, Vee

 
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