Author Topic: SJOGRENS VS MS  (Read 5746 times)

tmarie0183

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SJOGRENS VS MS
« on: May 18, 2011, 07:30:52 PM »
Has anyone else been tested for MS??  Has anyone been misdiagnosed with one only to end up having the other??
**30year old...Mommy of 2.....Sjogrens...Peripheral neuropathy...Increased cranial pressure....Visual changes....Migraines....Arthritis...Plaquenil...Vit D....Calcium...Omega 3...."Be kinder than usual to others for everyone is fighting their own battles"

hikerknees

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Re: SJOGRENS VS MS
« Reply #1 on: May 18, 2011, 08:37:30 PM »
Hi tmarie,
Since a lot of my symptoms were weird visual things and my brother has MS, I think I was tested for MS for several years.  Even when my blood work came back positive for SSa and SCL-70 I didn't think anything of it since I didn't have symptoms of Sjogrens or Scleroderma at the time.  Now I seem to have a classic case of primary Sjs and nothing has changed with my vision, I always pass my visual field tests with flying colors.
I think it can take a long time to get a diagnosis and misdiagnoses are common.  What has happened in your case?

buddybelle

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Re: SJOGRENS VS MS
« Reply #2 on: May 18, 2011, 09:22:04 PM »
Hi:
I was diagnosed with Secondary Progressive MS in 1993. I was just diagnosed with Sjogren's Syndrome. I have done some reading and many neurological problems present with MS can also be symptoms of SJS. Also many complications can be present in both.

For a diagnosis of MS you should have two separate neurological symptoms separated by time. A lumbar puncure and MRI, along with Evoked Potential Tests (vision, hearing, pain) should complete the picture. Low vitamin D is also prevalent in those with MS.
Many doctors are starting treatment after the first neurological event. Early treatment has been proven to slow the onset or progression of the disease.

I knew something was different when I all of the sudden had the dry mouth and dry eye. I am just learning about Sjogren's and trying to figure out where the two overlap and how to treat the SJS.

Good Luck

engy

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Re: SJOGRENS VS MS
« Reply #3 on: May 19, 2011, 10:06:39 AM »
My neuro. tested me for MS too because a lot of symptoms are similar to Sjogrens.  Even though I clearly have SJS, I also have many other issues going on and he wanted to make sure we caught everything and we are treating everything appropriately.

I had an Evoked Potential Test done and an MRI to check for white matter on my brain.  Both came back normal, my only 2 tests that have so far.
DX:Sjogrens w/mild Lupus overlap,Hashi,Celiac,Raynauds,Sm.Fiber Neuropathy,POTS,Fibro.,CFS,OI & other dysautonomia.
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Scottietottie

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Re: SJOGRENS VS MS
« Reply #4 on: May 19, 2011, 02:07:44 PM »
Hi  :)

I was tested for MS in 1981 and then again in 1998. Negative both times. No dryness then either but the neurologist suggested I see a rheumatologist because he said my symptoms were real enough. (Peripheral neuropathy, lack of balance and intermittent tremors) My GP disagreed and didn't refer me to anyone. Finally got a dx in 2004.

The wonderful women who started this site were both misdiagnosed with MS - later found to be Sjogren's.

Take care - Scottie  :)
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Chickpea

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Re: SJOGRENS VS MS
« Reply #5 on: May 19, 2011, 03:08:41 PM »
Hi tmarie

I'm another one who was first diagnosed with MS.  In fact, when I first saw my neuro 5 years ago he diagnosed it within two minutes of meeting me!  I had a couple of MRIs which seemed to confirm it, but the Lumbar Puncture didn't show oligoclonal bands so I was in diagnosis 'limboland' for a couple of years.  I have mainly neuro symptoms and I'm lucky to have mild dryness symptoms compared with a lot of people here.

What's your situation?  Do you have neuro symptoms?  Have you had tests for MS?  Please try not to worry:  whatever label you're given the most important thing is that you get the right treatment and find support.

Thinking of you - Chickpea

Jackie

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Re: SJOGRENS VS MS
« Reply #6 on: May 20, 2011, 01:32:46 PM »
I have been diagnosed with both. MS 15 years ago, Sjogren's about a year ago. These diseases mimic each other. From what I have been told, you can know for sure that you have Sjogren's, but not MS. The symptoms and test results are the same. You can have legions in your brain and spine, neuropathy, optic neuritis, etc. with both. I am told I might have Sjogren's with neurological involvement and not MS at all. Again, there is no way to know for sure. The reason it is important to know is that the treatments to slow down the progression of these diseases is different. Right now, I don't know what to do about that. I am taking a few meds for each ailment, but not the heavy hitting drugs like interferon injections for MS and immune modulators like Cellcept for Sjogren's. I see both a neurologist and a rheumatologist. We are all confused. It is doubtful that a person has both, but not impossible.

If anyone knows more about this, let us know! If the person who started this thread (sorry, I can't see your name now that I am writing a note) would like more information from me, just let me know!

Jackie

Skylar

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Re: SJOGRENS VS MS
« Reply #7 on: May 20, 2011, 03:04:06 PM »
I'm another one who was originally tentatively diagnosed with MS first by both my neurologist and rheumatologist. I do have lesions in my brain but since they haven't changed over time and some other symptoms popped they changed it to Sjogren's. I remember my texts books describe Sjogren's as just dry eyes and dry mouth - that's it ............so I was shocked and saddened to discover it's much more, unfortunately, than that.

irish

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Re: SJOGRENS VS MS
« Reply #8 on: May 20, 2011, 03:37:35 PM »
Have any of you gone to the home page on this site and clicked on "articles"??? This will take you to a bunch of articles on neuropathy and some of them talk of MS.

I guess I thought there was a little difference in the symptoms. I thought that the MS will show up in the spinal tap plus the MRI'S are a little different in the spots that show up. Hopefully, this thread will continue cause it is very good. Thanks for starting it. Irish ;D

Pisces24

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Re: SJOGRENS VS MS
« Reply #9 on: May 21, 2011, 02:16:46 PM »
The different specialists I saw for 6 years all had different "ideas" but none ever broached MS to me.
But I hear almost everything from "Cancer but you are not sick enough" to "probably something you got from your cat".

Jackie

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Re: SJOGRENS VS MS
« Reply #10 on: May 21, 2011, 05:36:18 PM »
I was told that I definately had MS after a bout with optic neuritis 15 years ago. Spinal tap, MRI, and evoked potential test were all done. I never even questioned the diagnosis. No one did until 15 years later. I was shocked when my neurologist suggested I might not have MS after all, but Sjogren's only. Blood tests showed that I had Sjogren's for sure. My rheumotologists says I am in a rough spot because there is no way to prove MS or not. Sjogren's is certain.

I am not telling this story to talk about myself. I am saying there are a lot of uncertainties when it comes to diagnosing and treating diseases. You have to do your own research on conditions that are suggested or "proven" and every drug you are told to take so you can be informed. Then you make your own decision about what to do. No one else can do that for you. You can only garner strength from friends and family. Doctors might be frustrated with you, but it is your life and your body.

I am still a bit in limbo--taking some drugs not others. I will never have an absolute answer, I am afraid. I just have to learn to live the best I can with that knowledge.

Jozee

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Re: SJOGRENS VS MS
« Reply #11 on: May 21, 2011, 11:29:05 PM »
To too was told I had MS at first. Then I was told I had nothing, that it was all in my head. Then after 40 years of doctor hopping to find one that believed me, I was diagnosed with Sjogrens and small fiber sensory neuropathy.
Small Fiber Neuropathy, Sjogrens, Costachondritis, Sleep Apnea, Carpal Tunnel, High Blood Pressure, Fibromyalgia, Constrictive Pericarditis, horrible brain fog

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buddybelle

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Re: SJOGRENS VS MS
« Reply #12 on: May 22, 2011, 12:03:40 AM »
Jackie et all:

Everyone is so right. MS symptoms can mimic those of SJS. I am quite certain that my initial MS diagnosis was correct. When I was in the drug study I had serial MRIs every six months and every aspect of my disease was closely recorded.

I was just diagnosed with SJS after having Secondary Progressive MS diagnosis and treatment for 18 years. Like you, I am taking interferon shots and a number of other drugs to treat symptoms.

I am concerned about the additional diagnosis and the need to start yet another drug regimen. I have done so well with my treatment for MS and don't want to mess with it. My doctors are also concerned about me adding new drugs.

It is a tough decision - to treat or not to treat. that is the question.

Thanks for your response.

LeoLady

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Re: SJOGRENS VS MS
« Reply #13 on: May 22, 2011, 02:46:52 AM »
I'm glad to know I'm not alone.  I had optic neuritis in 1992 and then again in 2003.  The second time I was sent to a neuro for an MRI.  There were only two little specs on the films so the neuro said, "It's not likely, but I can't rule out MS."  Big help. 

Then I went to a good rheumy in 2008 (? brain fog) who sent me to the OKC Sjogren's clinic where my blood tests were negative, but the lip biopsy was way positive.  That with all the symptoms clinched the diagnosis of Primary SJS. 

I keep thinking the PN and balance issues are just part of the SJS with one exception.  Every time I take a shower (as cool as I can stand it) I get weak and then nauseous.  So to get good and clean I have to throw up and then collapse in bed.  Weird.  Does make one wonder...

Hugs,

LeoLady  (Melinda)

gurs

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Re: SJOGRENS VS MS
« Reply #14 on: May 22, 2011, 06:45:53 AM »
I think they must be soooooo similar..Im having horrible MS symptoms right now, but have Sjogrens/lupus, and Ive been tested alot for MS, but no indication..soooo, it must
be the sjogrens...its a nightmare because it doesnt really show on the MRI'S and lumbars...I have some white matter on my brain, but they
said its from migraines?

alot more than dry eyes and mouth right!!!

Gursie
50 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements