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neuro symptoms as first sign of Sjogren's?

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Old 01-27-2006, 08:45 AM   #1
Join Date: Jul 2005
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Mickey32 HB User
neuro symptoms as first sign of Sjogren's?

Hello. I hope everyone is doing well today. I have a question. I was wondering if anyone knows if neuro symptoms, like numbness and tingling, can be a first sign of Sjogren's. The reason I'm asking this is because I was diagnosed with MS iin Aug of 2000 because I had a numb foot. I was also diagnosed rather quickly, I think mostly because my mom also has MS. Then, this past December I was diagnosed with Sjogren's, after I started having a lot of trouble swallowing. No doctor could figure out why, until I went to a rheumy. I should also mention that I was diagnosed with Hypothyroidism in 1998. So my question is is it possible that I was misdiagnosed with MS and actually just have Sjogren's instead? I know that we aren't doctors, but I've been doing a lot of research and everything I read shows how similar MS and Sjogren's are. I've also read that lesions on an MRI can mimic those seen in Sjogren's. By the way, I did have a spinal tap before I was diagnosed and it showed some abnormalities, but there weree no bands, which is present in 95% of those with definite MS. Well, sorry of the long post. I was just wondering if anyone knew the answer to this question. Thanks for any info.


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Old 01-27-2006, 09:46 AM   #2
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curiousforever HB User
Re: neuro symptoms as first sign of Sjogren's?

I'm wondering that as well. I'm dealing with working diagnosis of idiopathic peripheral neuropathy...

Old 02-04-2006, 09:53 PM   #3
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purple2067 HB Userpurple2067 HB Userpurple2067 HB User
Re: neuro symptoms as first sign of Sjogren's?

It is possible to have *both* MS and Sjogrens. Some of the symptoms, such as fatigue and weakness can be the same for both. But MS doesn't cause dryness like Sjogrens does, and I don't think that the first symptom of Sjogrens is usually numbness. I have both. They originally sent me for an MRI because I was having numbness and they weren't sure why. My immunologist said it would be rare to have that symptom so early in the disease with Sjogrens, but he said anything is possible, and he wanted me checked for other Neurological problems as well. I went for an MRI and it was very, very clear that the lesions on my brain were not caused by Sjogrens. The radiologist knew the second that he saw it that I have MS. I then went to an MS specialist who sent me for a spinal tap, which confirmed my positive diagnosis of MS. I was only 23 years old. Now I'm 25.

The thing is, if you have one auto-immune disease such as MS, it is all the more likely that you have another one. I am a firm believer that auto-immune diseases go hand in hand with each other. I had an idiot neurologist who told me that if I have MS, it is not possible for me to have Sjogrens because you can't possibly have two auto-immune diseases. I left him and never looked back. Now I go to a neurologist who totally agrees with me that you can have several auto-immue diseases. One does not cancel out the other. In fact, a lot of doctors believe that having one just makes it more likely for you to have more.

I don't have a positive diagnosis of Sjogrens yet because my blood tests keep coming back "borderline". But now more and more symptoms are appearing that could not possibly be from my MS. (Dry sinuses, dry patches on my skin) So I have to go back to the immunologist and have him test my blood again. Another way to get a sure answer one way or the other is for them to biopsy a salivary gland. But that requires surgery on your lower lip.

Old 03-09-2006, 02:01 PM   #4
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imcindy347 HB User
Smile Re: neuro symptoms as first sign of Sjogren's?

In 1992 I was diagnosed with post viral Acute Disseminated Encephalomyelitis after contacting the flu virus. I am going through a rough time due to the poor neurological care and incorrect diagnosis when I was admitted to the hospital. I was released after 3 months and went to the University of Michigan Hospital for a proper diagnosis. I was 44 and in a wheelchair. I was told that this was a one time attact and that my recovery would be slow and that I would have to wait and see what deficits would remain. I had numbness in my trunk area and a tightness/banding feeling around the waist with profoud painful skin sensations. I would encounter spasms around the waist and above the upper back area.

It took one year of PT and OT for me to walk with two canes and another year for me to walk with one cane. I was still in pain and walking for any distance was not possible. I was on permanent disability. After another year, I started to get weaker on my right side and went back to two canes. At this time I became concerned that I might have MS, and consulted with a specialist at Detroit Medical Center MS Center. All MRI's and Spinal Tap was ruled out. My blood work showed possible Sjrogren's and I had the biopsy which showed positive. I did not have dry mouth or eyes. My Sjrogren's involves CNS. Unfortunately, I had to move away from my dear Doctor at the Detroit Medical Center. Due to my disability and the fact that I live alone, I moved to Kansas City, MO to be near my daughter. The doctor I have here doesn't seem to care and unfortunately, I am getting much worse. She is a neurologist and I am wondering if I should see a doctor who deals with something else.

My symptoms right now are stiffening of my trunk which is making it very difficult for me to move my arms and legs. I use a scooter to get around and a walker to walk to shower and to my car and to the scooter in the back of my van. My muscles are wasting away. I can not exercise other than stretch because it causes my trunk to spasm immediately, as it did from the beginning of my illness. Would like to hear from others experiencing same.


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