HealingWell
Search Close Search
☰

MS or Peripheral Nervous System Lupus?

Support Forums
>
Lupus
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 5/27/2007 10:35 PM (GMT 0)
I am currently undergoing testing to see if I have MS.  I was diagnosed with Lupus at age 16 (33 now) and have had only one flare..back then with kidney involvement.  I have been relatively symptom free for 18 years.  Last year I experienced a "dead leg" feeling in my left leg and something similar in my right arm/hand.  Lasted for about a week.  My left ear plugged up and I couldn't hear that well and balance was off.  That lasted about one month. Had loos of sensation, mild numbness in spots around my nose of the left side of my face.  Last for about 1 month.  All these things happened at about the same time.  I had a kind of humming feeling in my lower legs for two months or so after that.

Then in February of this year my ear plugged up again and I had a loss of sensation in my right leg...not complete numbness but just a loss of sensation.  Travelled up my leg over a few days and stopped at about my belly-button.  Right side only.  Could use my leg just fine.  Developed what was diagnosed as Bell's Palsy on the right side of my face which subsided quickly with anit-viral and prednisone.  The only thing that remained was a numb tongue (couldn't really taste) on right side only.

Asked Dr. to rule out MS, got a MRI.  Came back abnormal with lesions visible, very small.  Undergoing testing now but curious to see if anybody else has had these symptoms with Lupus.  Has anyone had Peripheral Nervous System Lupus?  Could this be it?  Does it show brain lesions in MRI for Peripheral Nervous System Lupus?

Louise M

Posted 5/28/2007 1:36 PM (GMT 0)
Louise, I'm sorry to hear you are going through this. I can't help much because I haven't gone through this, I just wanted to say that I hope it doesn't take you too long to get some answers. I know there are some people here with central nervous problems due to lupus, but I'm not sure about peripheral nervous system. I'm guessing you've also posted on the MS forum to see what they have to say about this. I really hope you get some answers soon so docs know which direction they should take you treatment. Take care and keep us updated when you are feeling up to it.
Posted 5/28/2007 5:11 PM (GMT 0)
Louise I havent experienced anything quite as drastic as what you described, but i have had feelings of numbness on one side of my face, crawling feelings on my nose and face, and crawling feelings and buzzing on my hands and feet. I did have muscle weakness but it was total body, not one side over the other.

I was tested for a B12 deficiency and was found to be borderline. My neuromuscular specialist told me to get Methylcobalamin supplement. I did, and it helped greatly. Might be something you could try in the meantime.

Wishing you the best,
darlene
Posted 6/6/2007 4:34 PM (GMT 0)

Hi! Louise,

I was in the opposite situation, with ms being ruled out first. My neuro explained to me that indeed, ms and lupus can happen together. He mentioned some type of complicated overlap, but at that point, I was so sick, I didn't care what the heck they called it. My CNS symptoms certainly felt like MS to me, but my MRI and MRA were normal. Either way, we certainly enjoy our symptoms. My rt.sided HA is often accompanied by rt ear pain and impaired hearing, with my left leg being numb and tingly. I always fall to the right, though. Hang in there, and rest, rest, rest. sue.

Posted 6/7/2007 4:12 PM (GMT 0)
Hi Louise.  Almost daily I experience some kind of lupus CNS symptoms.  I get loss of sensation, numbness, ticks, and vertigo.  My loss of sensation can be localized, such as in the face or scalp, or can be over large parts of my body.  The symptoms can be brief for only a few hours or can last weeks.   I also frequently have ringing in my ears, but that can be a side effect of my meds.  I've never had Bell's Palsy, but I know what it is and I'm glad yours went away quickly.  I was also evaluated for MS early in my search for a diagnosis.  At that time I didn't have any lesions on my brain or cervical MRI and I haven't had an MRI since.  I hope all your testing goes okay.  Take care. 

Posted 6/8/2007 6:21 PM (GMT 0)
Louise:

Like Suetoo and Butterflake, I had MS, MG, etc. ruled out first. Same symptoms as theirs and others. Much of it in the beginning was neuromuscular affecting my legs and arms like you go limp and/or wouldn't do what I wanted them to (sometimes with twitching muscles, spasms and hemipelgia), ticks and arm swings, peripheral sensory loss, meningitis like symptoms, etc. Much of what you described I believe is typical of Lupus CNS. I have a friend with MS, and it is also typical of MS. I think there may be several causes of brain lesions, vasculitis (I think). Usually they are MS lesions. The overlap was explained to me years back as originally they thought I had MS and borderline Lupus. Turns out it was just Lupus CNS. As stated, it is the same lovely bunch of symptoms either way. Treatment may be different though, I'm not sure. Have they ran the bio-marker tests for CNS Lupus yet? (AntiRo, RNP, IgG, etc.) or perhaps a spinal tap the rule in MS? That may help some. It must be confusing for you and the doctors.

Boy, it is good to hear that others get that weird fluctuation of here one minute/ one day/ one month - gone the next , here and there of symptoms. Not glad anyone has it, just glad to hear that it is possible. For some reason this back and forth thing was keeping them from diagnosing me with Lupus years ago, stating these fluctuations weren't possible. They have no choice but to except it now, but I wish they would have diagnosed it before I became severe with symptoms and organ damage. Hopefully they will do more research on Lupus CNS and the overlap syndromes. It is hard to have this, because there really isn't much out there to read and the doctors knowledge limited. I wish you all the best - keep fighting - Kristin
Posted 6/9/2007 7:24 PM (GMT 0)

Hi! Everyone,

It is so reassuring to know that my life with symptom after symptom of cns involvement, my lupus reality, is understood (and gee, doctors, suffered with) by so many. On a happy note, I just participated in a lupus study in Buffalo, specifically on cognitive deficits in pts. with lupus, and am hearing that more and more studies are showing that cns lupus is far more common than ever suspected, and being diagnosed much more readily. So that is cheery news. Did I whine yet that today I am absolutely, bone numbingly, tired? Hugs,

suetoo

Posted 11/9/2008 9:02 AM (GMT 0)
Bump! Up you go for King!
Posted 11/9/2008 4:10 PM (GMT 0)
suetoo, Can you point me to the study you participated in? I have some cognitive issues because of lupus, and my disability insurance company wants to argue about them. I'm wondering if the study might end up in a research paper that I could use. Thanks so much,
Posted 11/10/2008 3:51 AM (GMT 0)
Hi Lynnwood. If you don't see a response from Sue in the next couple days, you may want to try emailing her. Her post is over a year old. But she has been around a bit in October. It would REALLY be great if you've stumbled on some helpful info!! Woooo Hoooo!! Blessings!
Posted 11/11/2008 12:15 AM (GMT 0)

Hi,

I'm sorry you're suffering through those symptoms, and I know it's probably a bit scary. I haven't had actual dizziness, though i've had times when laying in bed I felt like I was moving. I also get buzzing sensations all over the place, on the bottom of my feet, the back of my head, my neck, and down one side of my spine. And...I too, have been getting numbness in my face. Mine has happened only the right side so far, mostly in my cheek area. Like a circle, it gets numb from the outer corner of my upper lip, the very outer corner of my nose, up and around below my eye, then down towards my chin, and back up to the outer corner of my bottom lip. It's been completely numb where I had no feeling in it. Another time, I had a very icy-hot feeling, then tingling, then it went half-numb. Both times, the numbness did wear off after a few hours. My ears don't get plugged up like yours, but I do get ringing and right before the ringing starts, it's feels like I just lost my hearing, then the ringing starts, but then I can still hear. I have no clue what is causing my symptoms, though. I didn't describe it all to my Rheum, as I get a feeling he is not too interested anymore, but when I said I didn't understand why I get nerve pains and severe muscle spasms all over the place, he said it was probably fibromyalgia.  But I've not had any kind of testing done to check into this all.

Posted 11/17/2008 12:15 AM (GMT 0)
I also have had various neuro type symptoms that come and go.  I haven't been on for awhile but last week I had a thorasic MRI done and an EMG on Wednesday.  I am being told that I have Transverse Myelitis. 

I have tingling/numbness on face, hands, feet, legs.  Whenever and for various lengths of time.  Most recently, urinary control issues, leg weakness, tingling from waist down and bee sting sensations.

I will let you know if anything comes from the tests...Dr explained it as the equivelent of MS, just in the spine caused by inflamation due to the SLE.

Check out this link:

Transverse Myelitis: Symptoms, Causes and Diagnosis

 http://www.myelitis.org/tm.htm

 

Posted 12/27/2008 11:01 PM (GMT 0)

I posted in another forum also but I figured this one was hitting close to home too so here I am. I am 31 years old and I suffer from Fibromyalgia, Migraines, Arrythmia/Palpitations, Syncope and it goes on. I am on a slew of medications. For years I have always been told my ANA was positive and I met some of the criteria for Lupus but I not enough for a complete diagnosis. He thought maybe someday in the future or maybe even never. I hoped for never.

 

I had been having worse back pain than usual so I asked for an MRI to see if I had any bad discs or anything and luckily I did that because they found a lesion. Now they are doing a complete workup for MS or CNS Lupus. They say it looks more like Lupus because of the area the lesion is located. The inflammation on my spine is in my lumbar. I am going for another MRI for my brain and cervical to make sure no other lesions have developed.

 

I am always nauseas, dizzy, I have tremors and tingling sensations. I get little jolts like tics throughout my body. I am very weak. I just started physical therapy a couple of weeks ago but I am very nervous. I get nervous that it could be both.

 

Any response would be helpful about MS or Lupus like what was the process you went through when you were first diagnosed and how did you feel if you dont mind me asking? My mind has been in a million different directions. I am not a patient person. The results cant come fast enough for me. Fibromyalgia is horrible enough to add something even more severe just sucks!

Posted 12/30/2008 3:15 PM (GMT 0)

Hi! Everyone, Hi! Lynnwood,

I am so sorry for the delay in this note, I just happened upon the thread again. It would have been fine to have emailed me separately from our forum. I am so grateful for this support group. And as a nurse who teaches, more than happy to help and share in anyway I can. The study I participated in was the SADRC of WNY, Systemic Autoimmune Disease Research Center at Buffalo General Hospital of Kaleida Heath, January 2007, study on cognitive function in Lupus. I went to the Division of Developmental and Behavioral Neurosciences on the 6th floor in one of the worst lake effect snow storms I can remember! Janet L. Shucard, Ph.D., was the contact person at the Department of Neurology. I was in awe at the resources compiled for such an important reason, and grateful for the chance to participate.

Lynnwood, thanks especially for your time to "moderate" this forum. I would be happy to send you my email. I was told the data would be publishing @ 2 years, so I have been watching.

sue

p.s. re: ms vs cns lupus, or fibro, my neuro doc offered me a spinal tap to more conclusively dx ms/lupus overlap, which he said was EXTREMELY rare and unusual, and I declined, in part because the risks didn't outweigh the benefit of knowing as my meds were helping so much. The agreement was another MRI and spinal tap would be reconsidered if I have a flare bad enough  to put me in the hospital. I never had specific pressure site pain, so fibro was ruled out quickly by my PCP

Posted 12/31/2008 7:34 PM (GMT 0)
Haha...thanks for posting here again, sue - I got your email but had no idea who it was from or who it was talking about ! but reading this post now I know! thanks
Posted 12/31/2008 9:02 PM (GMT 0)
I have been diagnosed with both MS and CNS Lupus, the 3rd MRI came back yesterday and he said the two lesions I have are each significant to each disease disease. The brain lesion showing the MS and the lumar spine is more significant to the Lupus along with all the other positive testing I have had done for Lupus.
Posted 4/26/2009 9:23 PM (GMT 0)
I have been diagnosed with MS and with Lupus (SLE). The bloodwork was a positive ANA and very high anti-dsdna along with photosensitive rashes and mouth ulcers. I also have 25 lesions on my brain MRI. Lesions on an MRI are pretty non-specific so the spinal tap was done and it showed no inflammation from Lupus (elevated white blood cell count ) and it did have the MS "marker". So my neuro and rheumy are positive I have both. It's rare, but it happens...that's what they tell me. The spinal tap wasn't as awful as I expected. My advice: Get an anti-anxiety med to relax you first. Helped me immensely.

I felt it was important to post (even though some of these threads are old), because when I was going through the diagnosis process I was terrified and searching for others who had been through it. There isn't a lot of information out there on the MS Lupus overlap.
Posted 3/31/2011 2:27 AM (GMT 0)
I haven't been on here in awhile wow! There has been soo much happen since I was last here. I did have a spinal tap which wasn't bad itself but the after effect was AWFUL it didn't clot correctly the spinal migraine was severe, I had to have a bloodpatch done where they take your blood out and insert it to clot the hole omg it was hideous! Anyway I went through very extensive testing only because of the "overlap" of all of my many conditions and of course they need to be thorough with such serious diseases anyway and the potency of the tx's and I also wanted to get other opinions just to be certain while I was in the process of testing but with a limited time as to not delay my tx. I have been having a tough go with the MS, I ended up being dx'd with Rapid Progressive MS we couldn't even finish some of the testing and had to just begin tx due to the lesions just multiplying before her eyes it has been insane and traumatic but I've stayed very positive throughout with my husband as my primary support and rock! I've been hospitalized no therapies have helped me and we are at the point where none may. We tried plasmapheresis when I lost the use of my legs and thankfully it helped the first time and then the second time they surgically put in a permanent tunneled vas cath so I can get the tx as needed so I now have the tubes hanging from my jugular vein but it's ok because I know it will help me and next time alot faster than last time now that I already am set. It actually helps my Lupus as well which they feel is more SLE than CNS and that the cns symptoms are from the MS but no matter how many rheumys I went to I couldnt get rid of the Lupus dx :P it is just so hard for them to tell with the symptoms sometimes which is which we have to "wait" and see which is effecting the cns and the SLE could be changed to CNS, that really doesn't matter to me I am just afraid though that it could be why I'm not doing well. Once I am a bit more stabilized I'm going to be trying the new med Benlysta. Anyone on that yet, any thoughts? I'm not keen on new meds but also am done right now with chemo like drugs so I'm kinda stuck here. I have not experienced a "flare down" in years, I just want a peek at remission so I can have a little bit of a better quality of life for me and my family. I'm sure you all can relate to what I'm saying. I hope you are all doing as well as possible! Wishing you all a low to no pain night! Stacey
Posted 3/31/2011 5:07 AM (GMT 0)

butterflake said...
I get loss of sensation, numbness, ticks, and vertigo. My loss of sensation can be localized, such as in the face or scalp, or can be over large parts of my body. The symptoms can be brief for only a few hours or can last weeks. I also frequently have ringing in my ears, but that can be a side effect of my meds.

Hi, I noticed that you are on Neurontin and that you noted you've been experiencing vertigo and tinnitus. I have been having similar symptoms as you described. I think the ringing in the ears is caused by and/or exacerbated by Neurontin. Although, I did have some of that before starting it. I'm torn between the diagnosis of MS and Lupus as of late, and because I have almost every symptom people have posted on this thread. Have you experienced eye symptoms, such as blurry/double vision or seeing spots or colors in your visual field? It's a good idea to note any changes when starting a medication when going though an illness such as Lupus. I know we're all taking a zillion drugs and it's hard to tell what your body is causing and what your meds are causing. I wish you luck.
Posted 3/31/2011 5:13 AM (GMT 0)

MissStacey said...


<FONT color=#800080>



<FONT color=#800080>



<FONT color=#800080>

MS or Lupus like what was the process you went through when you were first diagnosed and how did you feel if you dont mind me asking? My mind has been in a million different directions. I am not a patient person. The results cant come fast enough for me. Fibromyalgia is horrible enough to add something even more severe just sucks!

Wow, I have most of what you describe. I haven't been fainting, but have come close a few times over the last 6 months. My doctors keep going back and forth with saying I have Fibro, then sarcoidosis, another autoimmune disease or a neurological disorder, but they can never tell what even after all my testing. I need an MRI, because I keep having myoclonic shakes, momentary inability to understand what's going on or understand what people are saying to me, visual scotomas, seeing lights, and feeling like I'm going to have a seizure or faint. My EEG came back negative as well as my ANA. I'm feeling so horrible and weak, some days going outside to walk a block seems like an impossible achievement.
Posted 9/9/2012 2:14 AM (GMT 0)
So i have been getting awefull migraines for years and recently i have been feeling like i have absolutely no energy, for about2 years now all my muscles ache down to the bone even laying here in bed typing this i can feel my muscles getting tired. Last week my left hand went completely numb and half way up my forearm.i thought i was having a heart attack but all my cardiac enzymes came back fine head a ct to check for stroke and found no clots. So i came home and went to see my pcp so she has ordered a MRI to test for MS which is on monday. about 2-3 days ago i started seeing little black spots randomly kind of out of the corner of my eye when i look thinking its a bug or something nothing is there. Im just so tired, tired in general and tired of not having any answers. I just want to know why i feel like this!! You guys are the first and only people im sharing this with because i just dont think anyone else would understand. Is this how things started for any of you guys? Thanks for any input, im tired of doing this alone....
Posted 9/14/2012 10:29 PM (GMT 0)
I had a CAT scan because the women at work thought I'd suffered a stroke early in 2005 and told me to get checked out. Lesions were found in my neck, and originally it was thought that I had MS, but the lesions turned out to be blood clots from my known blood disorder (which is linked to Lupus), Antiphospholipid Syndrome. I had a clot-buster shot every morning for three days and that was that.
Posted 9/17/2012 11:34 PM (GMT 0)
Hi! I've had peripheral neuropathy for a dozen yrs and was dx'd with SLE in March 2010. I also have multiple cranial neuropathies, occipital neuralgia, trigeminal neuralgia and some autonomal neuropathies.

My MRI's are clear. It IS possible that lupus is destroying the myelin sheath on your nerves, even likely if you test neg for MS. You will likely need a spinal tap to see about the ms. You could have both. It could also be symptoms of CNS lupus or cerebritis lupus. You should have your MRI looked at by a neurologist who specializes in dealing with CNS lupus. Easier said then done and this will take alot of phone calls!

Love Julie
Posted 9/18/2012 5:11 AM (GMT 0)

Mpower007 said...
So i have been getting awefull migraines for years and recently i have been feeling like i have absolutely no energy, for about2 years now all my muscles ache down to the bone even laying here in bed typing this i can feel my muscles getting tired.

Try belladonna Homeopathic formula 12X every hour when headache is coming on. Avoid Nightshades and especially read labels for MSG and NEVER eat it. avoid chocolate. avoid coffee avoid wheat and corn. and figure out how to get REST to try to help your depleted adrenals
✚ New Topic ✚ Reply