concerned about symptoms/neuro. ?

[chrisgirl]

Hello,

I am awating DX but have been told by my neuro and rheumy that probably Sjs.  Neuro says the neurological symptoms (tingling in front of calves, back of thighs, hands, feet and face, very tight calf muscles, stabbing muscle pain, visual aura like thing, some shaky muscles) are manifestations of Sjs.  Rheumy says they are not because there are no lesions on Mris, nerve conductor test and eeg are all thankfully normal.  These tests were done this summer, with the last mri of brain in Jan.

Can you have PN or CNS involvement with Sjs if these tests come back normal?  do those of you on stronger meds than plaquenil have abnormal tests?  I am scared of these symptoms but no cause has been found.  Two new ones today (cold spot on back of leg, slight tremor in hands) really have me worried.  don't go back to the neuro for 6 months.  See the Rheumy again in two and I want to be prepared.

Thanks for any info. and advice.

Christy

[Chickpea]

Hi Christy

My neuro and rheumy can't agree on whether all my neuro symptoms are SjS related or not.  There are times when that concerns me, but really the label doesn't matter as long as you get some treatment.  Your symptoms are all very familiar, as is the development of new ones.  I found it helped to keep a daily journal and see if a pattern emerged.  Somehow that made it less scary.

Neuro symptoms are rare with SjS and they may not show up in an MRI or the other tests.  This is because the cns area affected could be in your spinal cord rather than your brain, or that the neuro analysing the MRI doesn't have as much experience with SjS as with MS.  Ditto nerve conduction tests, evoked potentials, EEGs etc.

Like you I have longer gaps between seeing my neuro than my rheumy which seems odd when I have mostly cns symptoms.  But the rheumy is more confident about treatment.  Maybe you could ask for an earlier consult with the neuro?  Looking back I wish I'd been more proactive about getting information - just a bit more pushy!

Take care - Chickpea

ps  I'm replying to this post rather than your earlier one but just as a quick answer to that:  yes, my first MRI did show white lesions but the second a year later didn't show the progression the neuro said he expected to see if it was MS.

[lesleyjoy]

Hi Christy, YES you can have these neurological symptoms with many of the autoimmune conditions and have negative bloodwork and negative MRI. In 1996, I developed many of the symptoms you mentioned and was scared that I had MS but all tests showed negative. I was diagnosed with CFS (Chronic Fatigue Syndrome) which can also have these symptoms, but they're not permanent or progressive. Neurological symptoms can be very scary indeed 

I'd had an assortment of other stuff on and off since before 1980 and then in 2004, the dryness issues began, eyes first then mouth and nose! All this time my bloodwork had been negative (except for one Lupus pointer 2006) which disappeared as quickly as it came  I was very fortunate that I'd kept a mental diary of symptoms over the years which I wrote down and gave to the rhumatologist. When he read it, he said that he knew something autoimmune was going on, it was great to have someone acknowledge my stuff  as real. I hadn't actually put the word 'autoimmune' to anything I'd experienced until I read up about Sjogrens.
I'm not any immune suppressant medication, just 10mgs Doxepin per day. I have a friend who has Lupus and Sjs and is on plaquinel. Since she's been on the plaq all of her bloodwork has returned to normal. From what I've read, this happens quite a lot.

I know it's difficult but try not to get too worried about the symptoms...the MRI's and EEG's have knocked out the major nasties.

Good Luck, Lesley (New Zealand)

[eyeamdry]

Christy, I have PN in my legs that does not show on EEG's. (Oh, how I hate those.)

I take Plaquenil and Methotrexate as my main SJS meds.  I also have Lyrica for the PN and a pain med. 
Yes, your blood tests can return to normal after being on Plaquenil (and other meds?).  I know because mine did. 

Lucy

[rnathans]

I have CNS symptoms including myopathy-muscle weakness, spasticity and abnormally brisk  reflexes in my legs yet MRI's and blood work are all negative.

[chrisgirl]

Thanks for your replies.

Chickpea, it sounds like you have really been through a lot.  I am sorry for that.  How do they decide to use meds stronger than Plaquenil if the neuro test come back normal?  And if you lose some abilities, do they come back or are they permanent.  Is it is bad as MS if you have neruo issuues?  Sorry for all the quesitons, just trying to wrap my mind around all this and be prepared for the doctors who seem to disagree.

Lesleyjoy, have your neuro. symptoms progressed into nerve or muscle diseases?  I was told a long time ago I may have FM but my current neuro says no.  Do they think the CFS was really Sjs, or is this in addition to it?  Thanks for your encouraging words.

Eyeamdry and Rnathans, this may sound like a dumb question, but how did they decide it was PN if the eeg was normal(I hate that test too!) and how did they dx myopathy with normal test results?  I don't think I have the weakness, but definitely tight cramping calves and brisk relexes (which my neuro wrote in my chart but didn't tell me, just says "you have great reflexes".

[Chickpea]

Hi Christy

Sorry I didn't explain my situation that clearly in my last post.  I was trying to say general things about neuro tests and SjS, rather than say too much about myself!

My neuro tests didn't come back normal, just eventually not indicative of MS even though lots of my symptoms look like MS.  Like rnathans I have neuro symptoms that respond to basic neuro tests - abnormally brisk reflexes, spasticity etc - and other cns issues that are more complicated.  My blood tests and Schirmer's eye dryness test indicate SjS so that's what they're treating.  The delay in treatment was because the neuro and rheumy couldn't agree on whether it was MS or SjS, and the treatments are very different. (Although that's changing now.)  Recent blood tests show that the meds need to move up a gear.

Whether changes are permanent or not is an open question, and one I haven't asked any doctors yet!  By nature I'm optimistic so I'm planning on a long and healthy old age ... but I'm also realistic so I'm making the most of every day as it is now.  There have been huge changes in my daily life but it's still a good life filled with family, friends, love, books, old films etc etc.  And all the Sjoggies who make me smile.

Keep asking your questions.  We all remember what it's like in 'limboland' and will do everything we can to help you.

Take care - Chickpea

[rnathans]

Chrisgirl,

I have  peripheral neuropathy symptoms and on pinprick testing have decreased sensation,etc. As for myopathy again there is obvious muscle weakness, I cannot get up from a low chair, toilet,etc. A good physician will put all the clinical symptoms together. That is how I was finally diagnosed. I also had my stomach shut down to a crawl a few years ago. The diagnoses that fit the simultaneous development of all these varied neuro problems turned  to be Sjogrens.

BTW, it is not uncommon for people with peripheral neuropathy to have negative EMG's.
Ruth

[chrisgirl]

Thanks Chickpea and Ruth.  It seems as though my rheumy, nice as he was, may not know all he needs to about cns involvement.  I feel like I can talk to him better about it now at my next appt. and hope that he listens.  Ruth, do you take any meds stronger than Plaquenil?  Is there anything I can do about the stiff, cramping calf muscles.  they just get worse each day, and worse as the day goes on.  I do lots of stretching, but beyond that I'm not sure what to do.  Is this spasticity?

Christy

[lesleyjoy]

Thanks for your replies.
Lesleyjoy, have your neuro. symptoms progressed into nerve or muscle diseases?  I was told a long time ago I may have FM but my current neuro says no.  Do they think the CFS was really Sjs, or is this in addition to it?  Thanks for your encouraging words.

Hi again Christy, No I've had no progression at all and sometimes the symptoms go away for month before returning. The only thing that's new is that I have an odd neuropathy thing going on around the outside of my left ear. It was quite painful when it started but now its subsided to a fluttering feeling (mainly in the evenings)...weird!

I don't really know if I have CFS, Sjs or Lupus. My personal feeling is that I may have a low level Lupus with secondary Sjs. The rhumatologist acknowledges CFS but was reluctant to say whatever AI he thought it might be. He did say that you can have AI's going on without them showing up in your bloodwork. Also, autoimmune stuff is in my mothers family. My maternal grandmother had Graves Thyroid(rapid) and so does my mother, who's 82. She also has IBS and dry eyes.  My grandmother died at 96 in her sleep, so that's encouraging. The rhumatologist was quick to ask what conditions were in my family once I showed him my list  . My thyroid is fine, but often the autoimmune conditions present differently in other family members. 
AI's like to hang around in groups so many people have 2 or 3 of them and they can overlap, making it difficult to know what's causing what! 
I do know that this dryness thing is secondary to something else that's been going on for years. In late 1995, I was laid up on the couch for about 6 weeks with muscle and joint pain in my arms and legs. I couldn't climb the steps as my legs were so tired and heavy. The soles of my feet were desensitized, I had numb patches on my buttocks, legs and face and lots of course fasciculations all over my body and I was shaky and had awful depression. It was really terrifying for me  I had to wait 10 weeks to see a neurologist who did the tests and said all was clear  It took several months to come right and I've never had the muscle/joint pains badly since...

Sorry to be long winded, but now I know that's it's autoimmune related so I'm more relaxed about it. Both my daughters 24 and 21 have mild features of AI so it's not a mystery. Apart from that, luckily we're all a normal weight, active and healthy 

Good luck to you Christy,
Lesley (NZ)

[rnathans]

Christy,
Are you followed regularly by a neurologist? He/she could help determine whether the stiff crampy muscles are due to spasticity both by your description and his clinical exam. If he suspects it is due to spasticity there are meds that relieve it- things like baclofen or dantrium. These help me.

I have been on stronger meds than plaquenil for at least 5 years now. At one point when I was at my sickest I was on cytoxan. Then I was on cellcept for awhile and more recently I started methotrexate in place of cellcept. We also just added IV steroids 2 days a month ( 1000mg of methylprednisone each of those days.) This seems to be helping somewhat.

Ruth

[chrisgirl]

Rnathans, thank you.  Sorry for so many questions.  I'm just confused because the neuro and rheumy are telling me different things and I want to be proactive.  These neuro symptoms have been going on for over a year and the calf thing is new.  I have young children at home and am terrified of progression.  I really hope that the new meds you are on help you and give you strength back.  I'm sorry for all you've been through.

Christy

[Nathan]

For those of you out there with PN/CNS Involvement, what kind of treatment are you receiving? I've heard people getting CellCept, but I don't remember (rather ironically) what else is being used for treatment.

[Chickpea]

Hi Nathan

I think quite a few of us are on CellCept or Methotrexate or Rituxan, and some people take Imuran.  Ruth seems to be further along the road with immunosuppressants/chemo than the rest of us so her posts will be very informative.

I've been on Plaquenil and Prednisolone for 8 months, and CellCept for almost as long.  CellCept isn't having the required effect so I'm due to start on Cytoxan (cyclophosphamide) soon.  And I'm trying to reduce the steroids gradually.  I also take a range of pain meds including low dose nortriptyline for neuropathic pain.

I don't know about the others with cns involvement but I see the neuro and the rheumy, and also have treatment from the neurophysiotherapist: help with walking, use of hands etc as well as being given leg braces, wrist supports, walking frames and other equipment. 

Hope this helps.  How are you at the moment?

Take care - Chickpea

ps Have you seen today's news coverage of a study into the use of Cladribine for MS?  It's the med 'Leustat' used for leukaemia, and has resulted in a 55% reduction in relapses for MS patients in the study.

[cinmac]

Hi, Couldn't read all the posts (really dry today) so if I am repeating advice from someone else forgive me.

I have cold, numb legs, sometimes tingling, burning and stiffness in feet, hands, face, lips.  I have had 2 negative EMG's and a negative brain MRI, but my neuro says it is just a matter of catching it at the right time and it will show up, so I would say yes you can definitely test neg and still have an issue.

Also if you have never had blood sugar tested you might want to rule out pre diabetes or type 2 diabetes which can cause tingly nerve stuff too.

cinmac