Author Topic: New here and very, very confused  (Read 3976 times)

Albion

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New here and very, very confused
« on: May 03, 2009, 04:54:06 PM »
Hello, all, thank you for allowing me in and perhaps helping me out a bit. My name is Andrea, I'm 41, and all kinds of messed up.

I'm also very confused.  I have MS, was diagnosed again with Sjogren's a few days ago and now am wondering if it's MS at all, or if all my symptoms are Sjogren's, or if I have both, or if I just have Entire Auto-Immune Disorder.  ::)

All this nonsense started like this: I started having MS symptoms in 1989 that came in flares, such as blurry vision (no eye dryness), optic neuritis, Uhtoff's Syndrome (blurry vision and muscle weakness with heat), numbness, weird sensations, weakness, double vision, ataxia, foot drop and leg dragging, vertigo, fatigue and brain fog, as well as trigeminal neuralgia and occipital neuralgia that developed in 2001.

So in 2001, after waking up numb on one side of my body and having been blind in one eye for 2 months, and with please-kill-me-now trigeminal pain, I decided to see a doctor. I had also developed joint pain with redness, puffiness and warmth in the joints.  I had many tests done. My MRI was positive for MS. The MR spectroscopy showed inflammation in a few of the lesions as well as normal appearing white matter, indicative of a demylinating, inflammatory disease. My LP was negative for MS. My RH, ANA, and lupus tests were negative. I tested positive for Hashimoto's and started on Synthroid. The joint pain went away. In 2006 I started on Tysabri after failing other MS therapies.

A neuro-ophthalmologist diagnosed me with Sjogren's in 2006. My MS neurologist said I very well may have Sjogren's, but I still definitely had MS. I was having great success with Tysabri for the MS, didn't think I was having any Sjogren's type symptoms and so I ignored the Sjogren's diagnosis. I figured the dry eyes were caused by the meds I was on for trigeminal neuralgia. I tested negative for Sjogren's antibodies.

I had surgery for the trigeminal neuralgia last October, and discontinued the meds that had caused dry eyes and mouth. But the dry mouth worsened, and I felt like I had sand in my eyes, so I went to an ophthalmologist who put plugs in my eye drains, gave me Restasis and told me that all of his tests for Sjogren's were very much positive.

In the last few months, pain in my leg muscles and joint pain has increased to a level of severe discomfort. My finger joints are streaked red and puffy. I've been running a low grade fever for 4 months. That and the recent eye problems convinced me to go see a rheumatologist to see if this Sjogren's thing had been correct after all.

The rheumatologist said that there is no doubt I have Sjogren's. He said the fasciculations and cramps that I have in my muscles are neurological in nature, but the muscle pain that I'm having is Sjogren's. He tested me for muscle enzymes, but I don't have those results yet.

My confusion is based on medical articles I've read that state optic neuritis, cranial neuralgias and other "MS'ey" symptoms can be caused by Sjogren's.

I do realize it's possible to have both MS and Sjogren's. I also have pernicious anemia, and realize that these auto-immune disorders can come in groups.

What's killing me is the joint and muscle pain. I can't use steroids anymore as I have osteopenia. I can't use another immune suppressant therapy with the Tysabri because of an increased risk of a brain infection called PML. There's a stabbing pain in front of my ear, that's worsened when my jaw muscles cramp, which they frequently do.

So my question is this: If I had neurologically involved Sjogren's, wouldn't the antibody tests more likely be positive? Can Sjogren's cause Uhtoff's Syndrome? That's something that seems exclusive to MS. If it was Sjogren's instead of MS, wouldn't I have had dry eyes before having neurological symptoms?

Any advise?!

Thank you, and sorry for the looooong post.  :) 
« Last Edit: May 03, 2009, 05:00:37 PM by Albion »

irish

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Re: New here and very, very confused
« Reply #1 on: May 03, 2009, 10:27:25 PM »
Albion, Welcome to our site. It sure sounds like you have been through the wringer. You have had a lot of tests and it sure does sound like you have MS from the symptoms that you listed.

Like you said the sjogrens can come along with the MS and it is not uncommon for it to do so. If you are really wondering about the MS versus Sjogrens it may be time to talk to your neurologist and voice your concern. You may need to have another more current MRI of the brain done. Also, did you happen to have a spinal tap done to help verify the MS diagnosis??

As far as the muscle and joint pain, you may want to ask your rheumy if you are able to take plaquenil with any of the other meds you are on. It takes quite a few months to kick in and pain meds would be something that would be in order. Also, have you ever been put on gabapentin or lyrica to help with the nerve pain in your face??

THe other thing that I am wondering about is IVIG. Have any of your doctors mentioned Immune gammaglobulin infusions for your MS and other autoimmune issues?? This is being done more often for the MS and for other neurological problems. The deal is one has to have a neuro or immunologist who is able to document your condition so that you will be able to get the infusions. The gammaglobulin is expensive and in such high demand that manufacturers can hardly keep up. There is a board who has set up criteria that must be met in order to be eligible to get the infusions.

I have myasthenia gravis and that is on the approved list. There are many conditions that are grandfathered in because of circumstances. It might be worth your while to check up on this.. Might make it easier for you to take other drugs without interactions if you can tolerate the gammaglobulin. Good luck and keep us informed. Irish  ;D

eyeamdry

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Re: New here and very, very confused
« Reply #2 on: May 03, 2009, 10:38:42 PM »
Hi Albion-
Welcome to Sjogrens World, although we are sorry you have to be here.  Your details are so graphic and you've had such a rough time.  My niece (by marriage) has MS and I know how debilitating it can be.

I have Sjogrens, being dx two years ago.  I had Lasik surgery almost 10 years ago which started my dry eye dilemma and gave me trigeminal neuralgia to boot.  Also ruined my vision as i never healed correctly.  I have TN in my left eye.  Recently, I've been put on Lyrica by my rheumy which has helped the TN pain about 50 %, which is quite a bit.  Nothing else ever touched the pain of TN.  You mentioned surgery on yours.  Can you elaborate, if not on the board a private message.  Thanks.  Lucy

Linda196

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Re: New here and very, very confused
« Reply #3 on: May 04, 2009, 04:33:03 AM »
Hello Andrea, welcome to Sjogren's World.

As you already know, MS and SjS can co-exist, and AIs come in "clumps" , but there's still the possibility of mis-diagnosing  SjS with a neurological presentation, as MS. The fact that your LP was negative might be a pretty good indicator of SjS, at least that's what my neuro feels... no matter how positive all the other tests are for MS, if you don't have Oligoclonal bands, you probably don't have MS! SjS can present with neurological or other systemic symptoms before any sign of dry eyes or mouth, and that fact is just becoming known, and not very widespread knowledge at that, so many doctors just don't understand it. Unfortunately, the severity and type of symptoms doesn't seem to make any difference in the production of antibodies, so it's very possible to be seronegative even with severe neurological symptoms (also possible to have extremely high antibody counts with minimal symptoms).

When you have the chance, read the biographies of our "founding mothers" Care and Spring...both lived with a diagnosis of MS for some time before being correctly diagnosed with SjS. If your neurologist isn't willing to entertain this possibility, maybe you could look for a second opinion.

You also asked about Uhtoff''s...Uhtoff's occurs in some patients after the optic nerves are damaged due to optic neuritis, but it doesn't seem to matter what caused the neuritis in the first place, although MS is probably the most common cause.
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Scottietottie

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Re: New here and very, very confused
« Reply #4 on: May 04, 2009, 06:53:15 AM »
hello Andrea  :)

Just wanted to add my welcome to Sjogren's world!  I hope you get the answers you seek soon. Unfortunately it seems to take time to unravel symptoms and it's particularly difficult when several diseases have overlapping symptoms!

Take care - Scottie  :)
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JannaLee

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Re: New here and very, very confused
« Reply #5 on: May 04, 2009, 07:42:48 AM »
Hi Andrea,

I think you should read Dr. Julius Birnbaum's articles about this.  He specializes in determining which it is and stresses the importance of knowing the difference.  I would google him and find everything he's written, if you can.

http://www.hopkinsmedicine.org/neurology_neurosurgery/experts/team_member_profile/D2AE1BB5C0D4684E9A70D7329318EBD0/Julius_Birnbaum

And have a look at this thread, if you've not already seen it.
http://sjogrensworld.org/forums/index.php?topic=8652.msg85279#msg85279

Sending you empathy and understanding!
Janna
« Last Edit: May 04, 2009, 07:44:53 AM by JannaLee »

Chickpea

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Re: New here and very, very confused
« Reply #6 on: May 04, 2009, 08:56:03 AM »
Hi Andrea

You've really been through a difficult time and it sounds as though life is particularly tough at the moment.  I'm glad you've found us and I hope we can offer some help and support.

I'm another Sjoggie who was initially diagnosed with MS (Primary Progressive form) based on symptoms and a positive MRI.  But my LP/spinal tap didn't show any oligoclonal bands and, as Linda says, that seems to be the difference between an MS diagnosis and a diagnosis of Sjogrens with central nervous system (cns) involvement.

I was relieved to find this site and read about Care and Spring who had travelled this road before me.  Dr Birnbaum is interested in people just like us and reading about his work was also very reassuring.  For most doctors, SjS is limited to dryness issues and few of them understand the cns issues.  You ask whether your dryness symptoms would have come first, before neuro issues, if this was SjS rather than MS: I've had increasingly debilitating neuro issues for at least 5 years but only had dryness issues for a year or so, and they're not that severe now - so it is possible.  In a way it doesn't matter what label you have except when it comes to treatment.

What pain meds are you taking?  It sounds as though your quality of life would be improved if your pain issues were addressed.  I use a TENS machine which helps with muscle and joint pain, as well as taking an array of pain meds from Voltarol to morphine, with a cover of Paracetamol and low dose nortriptyline for neuropathic pain.  I'm still in constant pain but mostly at a level I can deal with.

Visit lots and let us know how you are doing.

Thinking of you - Chickpea

Albion

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Re: New here and very, very confused
« Reply #7 on: May 04, 2009, 09:57:32 AM »
Thanks for the replies.

Irish: I actually used IVIG for MS a few years ago, but it didn't help the neurological symptoms I was having. It did, however, help with fatigue. Significantly. But Tysabri has actually stopped the neurological symptoms I was having. All that tells me, though, is that Tysabri stopped the auto-immune attack going on in my brain. Also, I recently had an MRI that showed no changed (I haven't had any changes since 2004) and the spectroscopy showed no inflammation.

Eyeamdry: The surgery I had is called glycerol rhizotomy. Glycerol is injected into the trigeminal ganglion and from there, numbs the various branches of the nerve. This type of TN surgery is used when demylination caused the TN, not a blood vessel intruding upon the nerve. The surgery worked and I've quit taking Trileptal, Depakote and Baclofen, after years and years of various anti-seizure drugs. I don't do well on Lyrica. My eyes go all wall-eyed.

Linda: My neuro is positive it's MS, even though the LP is negative, because I have trigeminal neuralgia. I don't think he realizes that this disorder occurs in Sjogren's as well. I didn't know that about Uhtoff's...thanks. It is one thing that seems to set SS and MS apart. I can't find a single reference of Uhtoff's occuring in Sjogren's.

Scottie and Janna, thank you!

Chickpea, I''m sorry you went through all of that. I understand that Sjogren's can cause peripheral and cranial neuropathies, which is a good chunk of MS symptoms, but have you also had balance issues, vertigo, double vision, etc.?

In one of the articles I read here, a doctor expressed her belief that MS and SS did not co-exist. Rather, if you have Sjgoren's, the MS is actually neurological manifestations of Sjogren's. She sounds convincing. Now I'm not sure both can co-exist.

What I can't find is if Sjogren's patients also have sudden-onset flares that clear up with i.v. steroids, or, if you just wait it out, clear up largely on their own, sometimes with residual symptoms that become permanent. Does this MS pattern of remitting and relapsing repeat itself in Sjogren's?

I've been using Ativan for the leg pain. This slows down the cramping and fasciculations, but not a lot. I also take Vicodin and ibuprofen. My neurologist offered seroquil or something like that for extreme fatigue, and I see that's used in SS. My husband stretches my legs out, and this helps as well. Exercise makes it worse for a while (sometimes causing sudden paralysis of the legs) but it's usually worth it, for the energy boost. This is a hard thing for me, because I've always been very athletic.

Thanks again, everyone. :)

I think I'll have the lip biopsy to confirm Sjogren's, do more research to see if SS and MS really can/do co-exist, and talk to this new rheumatologist about medications to control joint and muscle pain. Thanks for your input.
« Last Edit: May 04, 2009, 09:59:03 AM by Albion »