Neurologist for Lupus??

Do any of you see a neurologist for your lupus?  Do any of you have many neurologic symptoms?  

I am in limbo with a dx between lupus and MS.  It seems more like MS to me but it has been all but ruled out by a different neurologist (normal LP, MRI, and evoked potentials).  My sx'x are: EXTREME fatigue, dizziness, proprioception altered, 3-4 weeks of decreased vision in right eye, confusion, tingling/numbness in face, cold extremities, arms fall asleep every night.  The only lupus sx's I have are: raynauds, some joint pain/swelling especially in morning and the only lab I have that's abnormal is positive dsDNA...which is apparently highly indicative of lupus.  But...ANA negative x 2.  Oh, and I do occasionally get a rash on chest and have gotten rash from sun...& I sometimes get these little "blister" type spots on my chest that leave scars..but only like 1-2 blisters at a time (different from sun rash that I get which is all out rash).

Anway, I cannot get in to a rheumy for another month and I have an appointment w another neuro next week.  Will they be able to help decipher MS vs. Lupus?  Are all of these neuro sx's common w lupus?

Thanks for any help!

[aris44]

BTW...the rhuemy that I am waiting to see looked at my labs and history and had his PA call me to say that he doesn't believe this is lupus.

Also, another sx I have: tremors...is that a sx of lupus?

[karajo]

I would encourage you to call the rhemy back and ask, what is his/her response to your elevated anti-dsDNA.  "The Lupus Book" by Dr. Wallace says this antibody is rarely present in patients who do not have SLE.  They are found in 1/2 of those w/ the disease and represent one of the more specific parameters for diagnosis and for following severe inflammation or organ involvement.  Occasionally, healthy patients have low-level positive test.  Increased values reflect disease activity.

Lupus can affect the central nervous system and cause some of the symptoms you are experiencing as well as seizures.  I have most of the symptoms you describe, but I don't feel they are troublesome enough to go to the dr.  I can mention them the next time I see him.  Before I was diagnosed, I had horrible vertigo and nausea along w/ all the joint pain, muscle pain and weakness, rash, etc. that goes along w/ lupus.  The vertigo and nausea got so much better after I went on Plaquinel.  I still have some of thsoe symptoms when I have a flare. (rarely)  As far as the tremors go, I have read other lupus patients say they have that as well.  Every once in a while, I have muscle twitches and the feeling something is crawling under my skin. (is that what you are calling a tremor?)

[aris44]

Hello.  Thanks for your comment.  The dsDNA was 78 and normal is <42.  On the report it says that it may be lab artifact due to the single stranded DNA being normal.  Now, I have never heard of the ssDNA needing to be positive.  Maybe they meant ANA.  At any rate, that clause has given all the Dr's an out and they are calling it lab error.  Maybe it is.  I definitely have far more neuro type sx.  I will get tremors in my hands so bad that I drop things, I have been having trouble sleeping b/c at night my insides just shake, and muscle twitching occasionally.  

This just *****, I want my old (former) body back!

[karajo]

I agree, something is really wrong when tremors are that bad.

From what I understand, the ANA can flutuate and even be neg.  But the DsDNA reflects lupus organ involement and should not be ignored.  When do they plan to redo the test?  

Lupus can definitely affect the neuroligical system, but I'm sure they will want to check on MS too.  I'm not sure if MS can affect the DsDNA too.  That would be a good question to ask a neurologist.  Are you seeing a neurologist?

[aris44]

Just saw an MS specialist (neurologist) earlier this week.  She said it is definitely not MS as I have a normal exam and normal MRI, LP, and evoked potentials.  The MRI was done in January so I'm not sure if anything would have changed.  Her opinion on the dsDNA was that it was lab error.  This is so frustrating b/c I know there is something wrong with my body.  It is my body...I KNOW something is not right.  I used to be in perfect health...never had anything wrong with me!!  It's SOOOO frustrating!!

Thanks so much for your insight.  It's nice to have someone to chat with about it as I'm sure my hubby is tired of hearing it.  

[karajo]

It is nice to have someone to bounce things off of.  

So when will they repeat the autoimmune test?  I want to remind you of something Dr. Wallace said,  "The DsDNA antibody is rarely present in patients who do not have SLE."  Another bit of advice, b4 the draw your blood for another autoimmune panel, spend some time in the sun.  If you have lupus, it will cause the ANA to spike, thus a quicker dx.

[aris44]

Thanks..I read that in another post, you had suggested the sun thing.  Unfortunately there's not a lot of predictable sun where I live and my appointment is in the morning (June 11).  Will it help if I go tanning (not something I normally do) the day before?  I usually stay out of the sun entirely but I would really like some help with my symptoms and if there's any way to expedite the diagnosis (on month 9 already) I'm all ears.  

I have read that too, that dsDNA is very rare in normal population but I have had 3 doctors tell me that it is lab error or false positive since my ANA is negative and/or because of the lab report (stating that if serum does not react to single strand dna it is likely lab artifact).  

I do not want to have lupus.  But something is not right, and I just want to feel better.  

Thanks again!

[karajo]

I did a little reading up on ds and ss DNA.  I did find an article that correlated w/ what your dr. was saying.  The antibodies that affect the ds also affect the ss DNA.  

About the sun exposure.  I have read that time in the tanning bed will also affect ANA levels in lupus patients.  I would certainly think that if you spent some time in the sun the evening before, it might very well cause an influx in the ANA level.  

There is something called a negative ANA lupus.  This is when they take the 4 (out of the 11) criteria for lupus and form a dx accordingly.  Are you familar w/ the 11 criteria for lupus?

[aris44]

Yes, I think I likely have 4 of the 11 criteria.  I have raynauds (though I don't think that's one), swollen hand joints..esp. in AM, sun sensitivity/rash, positive dsDNA (it lists that on mayo's site), you could possibly say I've had the neurological disorder.  I have also had low platelet count on one occasion, though it came back up when re-checked.  I have also had casts in my urine a long time ago, I used to work in a lab and when training we used my urine...there were casts but it wasn't a UA ordered by a doc.

So, I guess some dr's would say I do not have 4 and some might say I do.  My luck I will not get anywhere with this.  Like I said, I do not "want" lupus...I just want answers.  This has been a long haul and I know something is not right with my body.  I'm tired of feeling like crap.

You know anything about anti-phospholipid syndrome?  It seems to have a lot of neurological symptoms like I'm having.  Though, could you have that and have also had a normal pregnancy?  I did have 2 miscarriages prior to the normal pregnancy and did loose a very large clot after the normal preg, but I just think it's unlikely that I would have had a normal pregnancy...??

Thanks again for your help!!

[karajo]

I did some more research and found an article that listed what the test results mean.  www.orgentec.com_images/73/297395382_605e.pdf
If I typed in something wrong, just do a search on dsDNA positive and ssDNA negative.  Some illnesses that can have a result like that are Mixed Connective Tissue Disease, Scleroderma, Sjogren, polymyositis / dermatomyositis, myastenia gravis (you don't have this), and or thyreotoxicosis.  So your test was (like your drs. said) an error or it could really mean something.  

I don't know if MS is as hard to dx as lupus, but I do know that I have some screaming neurological symptoms.  I think they are associated w/ lupus.  The rash you describ does sound like it could be a lupus rash.  I also get (what I call) skin eruptions.  They are red sores that come up because of sun exposure.  They will go away fairly quickly if I don't mess with them.  Every once in a while they will linger.  I don't think they have ever caused a scar, but the dicoid lupus does cause a scar.  

What day is your rhemy appt.?

[aris44]

Hi again.  I just got done having a VERY bad shaking spell and it was right after I worked out.  I checked my blood sugar and it was 63.  Not real low, but low.  Is there any reason lupus would cause low blood sugar?  Oh, and I had a pretty big breakfast not long before.  The shakiness comes and goes and doesn't usually seem to be related to meals or exercise but I wonder if low blood sugar is causing my symptoms.  I have had several glucose tests (fasting and otherwise) with the Dr. and none of them were abnormal.  I don't know.

I have a sore on my chest right now...I seem to get these "sores" that linger (though I tend to mess with them) always on my chest.  It seems they start (at least this one did) with a little blister.  The other thing is I occasionally have flank pain.  Not major, just mild flank pain that comes and goes.  

My appt is June 11th.

Thanks for all the help.  I will check out the article.

[aris44]

Also, my bp gets really low:  70's over 50's  I even took it one time lying down and it was 63/44.  I saw a cardiologist and they had me wear a holter which showed heart rate as slow as 40 at night.  He said this was all normal.  Doesn't feel normal.  Another cardiologist also said I just run low and try drinking gatorade, etc.  I'm getting at my whits end with doctors.  My body does not feel normal!

Anyway, ever hear of low blood pressure and/or blood sugar with lupus?  I know it can mess with the autonomic nervous system causing low bp, but sugar?  BTW...yes, I am eating plenty.  

I'll be really surprised if I don't have something autoimmune going on.  

[MarisaV]

I'm sorry you're going through all this.

I know the feeling. however, and its more than frustrating. Dealing with doctors, at times, can be as bad as the symptoms we're dealing with.

I've not been officially diagnosed yet. My Rheumatologist won't give me a diagnosis until he decides if its organ-threatening or non-organ-threatening Lupus (he's waiting on input from my Pulmunologist).

I have a lot of neurological symptoms too( dizziness, vertigo, Cognitive issues, lost time(probably partial complex seizures), muscle spasms, neuropathic pain, balance issues, paranoia, sensations of hot-and cold water droplets running down my right leg, cold patches on my skin, ad nauseum).

Originally I was convinced it was MS and that's what I pursued. IMO, Neurologists are a very weird bunch of doctors to deal with, and I hope I never have to see another one again.

MS, from what I've read in the MS support Groups, is even more difficult to diagnose than Lupus. Its very common for people to have10 years of suffering before they get a diagnosis. Also, Lupus is the Great Imitator of MS, and one of the first things the Neurologist will look for (Lupus is also 10 times more likely than MS).

I don't know if your symptoms are due to MS or Lupus either, but you definitely need to have your labwork done several times, and by different labs, if possible to confirm the anti-dsDNA (or any other test).

I also recommend getting some sun at least and hour or two before your blood is drawn. I had had three previous negative ANA tests, and was told by three different doctors I definitely did not have Lupus.

Then after 8 months of being sick and losing 25 lbs, my PCP finally said "maybe you have ANA negative Lupus".  So I stood outside in the sun for 15 minutes before my next blood test was performed... and my ANA came back positive. Then they did more tests and my ant-Sm/Smith was positive. Then they reran my tests at a different Lab... still positive.

Now, if you do have Lupus, the sun may cause you to get a Lupus flare, so you are taking that risk if you decide to do this. Also, yes, a tanning bed should also provoke a reaction if it provides ultraviolet B light (as far as I know, they all do).

The only thing I can say is keep on trying. If you know something is wrong, then there's something wrong. Just be prepared for the long haul and keep on checking and re-checking blood work... and maybe see a different Rheumatologist.

Its BS, if a doctor tells you that some tests "prove" you do not have Lupus. The diagnosis is a made from a combination of factors, Lab tests, the 11 ACR criteria, symptoms, clinical presentation, history, and the Rheumatologists experience and diagnostic skill.

As far as MS is concerned. Its a similar situation. So many people are told they definitely do not have MS, and that the tests prove it.... only to find out later that the tests don't always show MS. I've seen the MRIs of two different people where no lesions show on the standard 1.5T MRI machines, but when performed as little as a month later on a 3T MRI machine, these large lesions appear (also, small lesions are easily missed by standard MRI machines).

Mar

[aris44]

Thanks for the comment.  Your situation sounds very similar to mine (sx, etc).  I'm glad you decided to share with me as it is nice to hear from others who can relate.  Hopefully I will get somewhere with my rheumatologist next week.  I would just like to get somewhere with ANY doctor at this point.  

I was particularly interested to hear that you had so many neurological symptoms.  The nurse practitioner that works for the rheumy that I will see said you wouldn't see neurological symptoms unless somebody has "really bad lupus" (horrible rash, etc.).  At the time my skin looked completely clear, and in fact the rash I do get is not usually that bad.  So, anyway..interesting to hear your story.

Thanks!

[aris44]

Fabulous...I just spent the past two days in the sun and even went tanning in a tanning bed this morning before my appt and the Rheumy wouldn't draw an ANA!  So, now I have a horrible rash and feel like crap for nothing.  Just my luck.  He said that he wants to wait a full six months before repeating the tests.  Well, I guess I can do it again next time.  He says he pretty much never diagnoses lupus without a positive ANA.  But, he said a dsDNA is very specific for lupus, though he wants to recheck that and make sure...but not for another 3 months.

[karajo]

Meanwhile, please stay out of the sun.  If you do have lupus, it will cause damage to your organs.  You probably went overboard on the sun exposure.  Just about 10-15 min would be an aduquate amount.  

[aris44]

Hi, don't worry I will definitely stay out of the sun.  I usually do not EVER go out without sunscreen b/c it just makes my skin look horrible.  I was looking up some info and my rash looks exactly like polymorphous light eruption which they say is a common/benign solar rash.  Would that mean it's not lupus?  Or do lupus people also get PMLE?

Thanks

Oh, by the way...do you know much about antiphospholipid syndrome?  Seems like that one, from what I've read, can tend to cause more neurological symptoms.

[karajo]

I looked up polymorphous light eruption.  The article said it usually resolves as you gradually increase your sun exposure.  

Is there supposed to be other symptoms assoiciated w/ this skin eruption?  I didn't read where it made a person feel bad because of sun exposure.  Lupus does that.  

According to the Lupus Book by Dr. Wallace ~
COMPLICATIONS CAUSED BY ANTIPHOSPHOLIPID ANTIBODIES IN LUPUS:
Obstertic -
    Fetal loss/miscarriages
Hematologic -
    Arterial and venous closts (thromboses)
    Low platelet count
    anemia
Neurologic
   Stokes
   migraines
   transient ischemic attacks (TIAs or stroke warnings)
cardiologic
   Libman-Sachs endocarditis
pulmonary
   pulmonary emboli
   pulmonary hypertension
dermatologic
   livedo reticularis
   ulcers and gangrene

So yes, antiphosolipid antibodies can affect the central nervous system as well as other things.

[ggma1000]

Not only the sun can cause a rash, but also a reaction to most of the sunscreens. I finally found that out by putting some sunscreen in just one area under my bathing suit. The rash in that rash was identical to the rash where my skin was exposed to the sun. I could never sun bath, even before I had the butterfly rash on my face. I would always get a rash (before the days of sunscreen), nauseous and headache, even without any sunburn. The butterfly rash stayed rough and turned bright red in the sun for about 5 years and then took about another 5 years for my skin to be smooth again. I would also sneeze repeatedly when I went out in the sun just to walk to where the car was parked. This was years before I had ever heard of Lupus. I used to burn very easily, too...would peel and be white again. So I only get in the sun early in the morning before it gets strong, or late, just before sunset. I can get a little tan now but start early in the spring & still get out of the sun by 9 or 9:30 or cover up completely & wear dark sunglasses if I have to stay a bit longer. Diet makes a difference also.

Peace,  ggma1000

[weesleeket]

I have a neurologist. He/She should be able to help with a diagnosis or treatment of the symptoms you do have.

[wim49]

Just to let you know, I got diagnosed a couple of weeks ago with lupus. Two years ago, when it started to get bad enough that I finally went to a doc, they thought I had MS because of the muscle twitching and spasms and the numbness and tingling.

Two years later, I finally got my diagnosis of lupus. Stay strong and patient. You are your own advocate, remember that.

Best of luck

[aris44]

Thanks for all the comments.  I am still waiting for dx...the rheumy wants to re-check labs in September so until then..??  My left eye has been twitching for 11 days now.  It is so annoying.  The neurologist has no idea...she said we could try neurontin or Lyrica for the twitching/spasms but I'm a little hesitant.  She doesn't have any patients with Lupus and she said that is a rhuematology thing.  So, the waiting game...

I just wonder how likely a false positive dsDNA is?  Guess we'll find out it September.

[karajo]

Ask your primary dr. to do a vit D level.  It is probably low.  Vit D, calcium and magnesium should help with the eye twitches....eventually.  Stay with it and give it time to work.