Sjogrens/MS/Autoimmune?

[slightlybroken]

I'm a little nervous about my upcoming appointment coming up with a new neurologist. I have such a vast history of test (some not related to MS or finding MS). At the beginning of this whole mess, I had an MRI, ordered by my GP without contrast. That radiologist reported I had 4-5 lesions in my brain but they were  in atypical places for MS. These lesions were not present back in 1998 & 1999, when I had an MRI done due to waking up with slurred speech, weakness, etc..The doctors in 1998 believed that I had a focal seizure due to an abnormal EEG. The radiologist in my first MRI that my current GP ordered said on the MRI report that he believed it could be early demyelinating disease. At the beginning of May, when I was put in the hospital due to blood clots an internist spoke with me about other test that I had. He also said that he saw early demyelinating in my brain on my MRI and said I needed to see a neurologist. They also found a "nodular growth" on my lung during a CT scan and they wanted me to be evaluated by a pulmonologist. I have had problems with asthma in the past but currently haven't had to take any medication for it since I had a horrible attack over 2 years ago and they gave me steroid pills.

At the same time I had the weird episode in 1998, I just had an ENT (ear, nose,& throat) doctor look at me because a doctor noted a one sided multi-nodular goiter. He looked at it and all my blood work has came back within normal levels for thyroid. He also noticed I had swollen glands on one side of my neck. He did a lip biopsy to test for Sjogrens. Back then the doctors that I and my mother (who has Sjogrens) dealt with, knew very little of the disease. My biopsy came back with characteristics of Sjogrens. I had lymphocyte infiltration and it showed chronic inflammation. The ENT doctor did not believe that I had the disease because the lymphocyte count was not enough to put me over the limit for Sjogrens.

My question to him was..could I be in the early stages of the disease and that eventually my lymphocyte count would raise? He did not know. With all the problems I've had through the years, I knew something was wrong with me but I never got answers. I have read on the forum and other places that Sjogrens is a MS mimic. I've also read (if I read it right) that Sjogrens and MS can be related. That you could have both diseases. How would the doctors figure that out..that you had both? Should I explain to my new neurologist of all the vast test I've had and what they were looking for? Even if the result were negative.

I guess you could say I'm trying to figure this all out myself before my appointment. Most people when you mention Sjogrens around here because of my family history..  say ..What's that? I'm suffering with a lot of neurological symptoms but I do occasionally have spells of dry eyes and mouth. Sometimes it feels like my tongue is burnt. I now have the DVT issue to add to the list. The problem is I can't get a good doctor who will look past the blood test. They act like they believe, as far as autoimmune diseases, I don't have any autoimmune disease because of the negative blood test and MS gets knocked of the list due to negative LP and they say my lesions in the white matter of my brain is nonspecific. What the heck does nonspecific lesions mean?

I would greatly appreciate any input on my questions.
Thanks Love Ya...

[Quixotic1]

I'll hunt up some references on "Sero-Negative Sjogren's Syndrome."  That is SS but without the +ANA and the +antibodies.  What is needed is dry eyes (by test), dry mouth (by test) and + lip biopsy.  I'm amazed that you had lymphocytic infiltrate, but "not enough."  Huh?

Quix

[Quixotic1]

Here is a great site for SS info.  It talks about all the stuff, MRI lesions, mimicking MS, the prevalence of co-existing autoimmune disorders, the fact that SS-A and SS-B are NOT required for diagnosis, all the stuff we have talked about.

http://professionals.epilepsy.com/page/inflammatory_sjorgren.html

I thought it was a great and clear discussion.

Q

[slightlybroken]

The ENT said it was a "new" test that would say for sure if I had Sjogrens or not. Whoever the person is that evaluates the sample taken by the doctor, would not do this "new" test that counted lymphocytes. He had to have the results sent to an out-of-state lab. I guess they count lymphocytes and require a certain amount within a certain amount of space, I think..that's what he said.

I was left confused because from what I knew of Sjogrens, you would have those same characteristics(chronic inflammation/ lymphocyte infiltration) and symptoms (dry eyes and mouth) that showed up in my sample. When he told me the results of the test, I told him that I must have Sjogrens because my mother had no test to count her lymphocytes and was dx with the same findings. The ENT said I could believe that, but he pushed to have this "new" test done on the sample. After that came back, he then said he didn't believe I had it, but suggested that I go to the doctor who dx  my mother and have them dx me. At the time I lived out of state from where my mother lived and could not.

Thanks for looking that up for me...it's just confusing. I don't know what to tell new neurologist about this.

[slightlybroken]

Was this ENT full of it? Everything I've read here lately doesn't say anything about counting lymphocytes for a dx of Sjogrens. In fact, it says anytime that there is lymphocyte infiltration in a gland, it is abnormal.

What the Heck!

[santana8]

Slightly,
Have you had blood test to check for Sjogren's, ANA, RA factor, or the other two test to check for antibodies related to sjogren's?  I have had all of these except for the RA factor and the ones I had were negative. The Rheumy said that didn't mean I didn't have Sjogren's. I am confused here too!

Quix,

The next step is the lip biopsy, which I am going to ask my new neuro about on July 29th! I haven't had occasional bouts with dry eye, but continual severe dry eye for two years along with Meibomian Gland Dysfunction, and Blepharitis. These have been most most severe symptoms except of course the visual field defect and cognitive changes.

I don't know if I have dry mouth, but for about 5 years now I have constantly had to have something to drink by my side.  I noticed about 6 months ago that I was having some trouble swallowing dry foods and getting choked a lot on liquids( aspirating them into my lungs. Also I have had a chronic dry cough for about  5 years also.    Also I don't sweat like I used to and have a low body tempature all the time now.  One other thing that has been going on for about 5 years is mentstural migraines and messed up periods.  I don't know if any of this is related, but it sure seems to be!

I am definately going to bring up Sjogren's to the new neuro when I go to see him. It needs to be ruled in or out!

What do you all think?

~Santana~