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...
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?
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.
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.
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.
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!
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!
I know that they have tested me for RA and ANA..all have came up good. That's why the last neurologist didn't believe I had any autoimmune diseases. I ask them if that could be the problem because of my SX and because of my vast family history with autoimmune disease. They said I didn't have any autoimmune disease because of the negative RA and ANA which I think is bull because they aren't looking at the whole picture and labeled me "stressed". What your Rheumy said is correct and they didn't even consider that.
I'm not sure if any doctor has tested me for the antibodies. I'll have to find that out but I know all my mother's blood test were negative but she had a positive lip biopsy.
I forgot to add..if I were you I would bring it up. There is a posibility that you could have Sjogrens and something else (MS). I would definately want it ruled out and the blood test according what I've read aren't 100% realiable...more like 50% if I read it correctly that the antibodies show up.
I know there are two antibody test that they ran, I think they are called SSA and SSB, but not possitive, but Quix knows the name of them I'm sure. These two and also the ANA were all negative with me. The Rheumy didn't mention the RA test, so I don't know if that one was done, but will find out!
Anyway, what she said was that the negative results did not exclude Sjogren's and that I might have the syndrome anyway! I haven't gotten back to her yet for follow up, but as soon as I do I will ask her about the lip biopsy, if I don't ask the neuro first!
I asked why do the blood test if they don't give a definite dx, and she said that had they been possitive, it would have made it easier to dx, but that it definatlely did not exclude it by being negative!
My main reason for suspecting Sjogren's is the severness of the dry eye that I have suffered since the attack! It can also cause white matter lesions in the brain and I have 10. I don't think it is common for it to cause lesions in the brain, but it can happen. But from what I understand that the lesions from sjogren's are more like vascular lesions, not sure though, and my neuro thinks mine are demyelinating and feels I had ADEM!
I used the over the counter tears for a year and a half and it did not improve the dry eye, it only made it barable. I started the Restasis about a month ago and started noticing that the swelling in my Meibomian glands in the lids started to go down, and the pain was gone too. I missed about three doses of it and just started it back up last night, because the swelling and pain returned. I have taken two doses of the Restasis since one last night and one this morning, and it is already taking care of the pain and swelling.
Restasis is sort of an immune suppresant eye drop. It works by suppressing the cells from the immune system that are attacking my moisture producing glands, as far as I can tell by reading about it. This seems to be working for me, so how could the ANA and other antibody test be negative if an immune suppressant eye drop is working? I'M REALLY CONFUSED NOW! Maybe the lip biopsy will show something, but I am going to keep using the Restasis, because it is working and I can't take the eye pain anymore!
Do you have white matter lesions on the brain MRI, and if so how many and do you know where they are located? You also had the DVT! Is this part of Sjogren's symptoms too? I am sure you have been tested for the clotting disorders, if so did any of them come up positive? I had those test, and the factor V Leiden Mutation came back possitive, but the rest were negative.
The hematologist said that I only had one copy of the gene and put me on one baby asprin aday and said I didn't need to come back unless I had problems! I have never had a clot that I know of. I just had an ultrasound of my legs done right after this dx and it showed no clots!
Yes, I have white matter lesions on my brain MRI. There is 4-5, 3mm lesions in the white matter of the centrum semiovale superiorly. They also saw a questionable lesion in my c-spine. I had it done on an open MRI and wanted the new one done on a stronger MRI machine so I haven't had it re-checked.
My mother's rheumy told her that her multiple episodes of DVTs were because of her Sjogrens. She had unexplained blood clots. It looks like I'm taking after her. I've heard that Sjogrens can cause blood clots from several doctors including my vacular surgeon.
I was tested for Factor 5 Leiden but nobody can find my results. The vascular surgeon said that my results would not be reliable anyways because a false negative can be given if you already have a blood clot in your leg at the time of testing or if you are on blood thinners.
Have you had any repeat MRI scans that showed new lesions in time and space? My neuro says all of my lesions look like they are the same age, indicating that they all happened at the same time. This goes along with my clinical signs of only one severe attack two years ago.
Does your neuro think that the white matter lesions you have could be caused by Sjogren's? Has he dx you with MS or something else? From what I have read the percentage of Sjogren's patients to have white matter lesions is kind of small, but I wonder if lesions in MS or ADEM look different than lesions in Sjogren's, or if they are in a different location? These are the questions I have been trying to find out about!
There were a lot of clotting disorders they checked me for and the Factor V Leiden was the only possitive result, and is deffinately inherited by a person's parent or parent's. One copy, like I have beans that only one of my parent's have it! My dad has been tested recently and was negative, so I guess it is on my mom's side.
What are they saying caused your clot? I am assuming that they put you on blood thinners! Are you feeling better after the surgery? I am so glad that that went good for you!
Well, just one more question, do you have any of the ocular surface signs and symptoms like me, the Meibomian Gland dysfunction or Blepharitis along with the dry eye?
Now that I read all the symptoms related to Sjogren's I am really wondering if this might be what I have, especially the dry chronic cough. I have had it about 5 years, my GP says my lungs sound clear, but I cough unproductively all the time. My family has nicknamed me HAIRBALL, lol!!!!! they say it sounds like I am trying to cough up a hairball! lol!!!!
Also the dry nasal passages that feels crusty and also the vitiligo(white patches from pigmentation loss) I have on my arms is in the list too! I found a good site that tells all of the possible symptoms of Sjogren's, do you want me to give you the address?
I've had a repeat MRI but I don't have but the first radiologist report. As far as I know, there have been no new lesions but I have lots of SX that come and go. That's why I wanted a better machine. The open MRI was just a .7 tesla. My last neurologist didn't tell me anything. On my first exam with him I had hyper reflexes in my arm and he did prescribe me medication for my sx but he never gave me any kind of dx. I thought of Sjogrens because of the old lip biopsy I had and because of the blood clots.
I can only speculate that lesions cause by Sjogrens can look the same as lesions cause from MS because of people being misdiagnosed. I would say the big difference between the diseases is that maybe MS lesions would eventually get bigger but I'm not sure about that. According what I've read from Quix post, Sjogrens is a perfect mimic and can show up in the same places as MS.
They have no idea what caused my blood clot. They did put me on Coumadin ( a blood thinner) and my blood got too thin. It cause several complications but the weird part about it was that my clot in my leg grew. Coumadin is suppose to prevent that from happening but it didn't. Surgery went ok with removing it but I still have 2 pieces left. The vacular surgeon believes I've had these clots for a long time due to there color.
I don't have any ocular surface problems. The only eye problems I've had was double vision and one of my eyes were sluggish to react to light. I also had blurred vision in one of my eyes. That has resolved for the most part but I still get the double vision. I had problems with my eye being sluggish back in 1998 when I had that episode of slurred speech. I do have moderate dry eye which I use artificial tears for.
My mother has the dry cough too. She has had it as long as I could remember. She will choke for no reason. Her Sjogrens has done a lot of damage to her GI system and joints. I will cough and get dry foods caught in my throat. It feels like it gets hung up on something in my neck.
Thank God you only had 1 gene for the factor 5. My mother said she will get tested for it the next time she goes to the doctor for a check up. The treatment for Sjogrens is, sx treatment and from what I read immunosuppressant drugs. My mother has never had these drugs and I think she needs them but the doctors around her don't know how to treat.
Yes..send me that site when you get a chance. lol beans :)
I learned something interesting a few days ago about the testing of the salivary glands for Sjogren’s. I had my “lip” biopsy, or minor salivary gland biopsy a few days ago, and that doctor who performed it (a head and neck specialist) said he would prefer to do a biopsy of the major salivary glands, which meant I would have to reschedule and wait even longer. My situation is that my immunologist has prescribed prednisone and Plaquenil, which I could start once the biopsy was done. Regardless of the outcome, I am now getting treatment for connective tissue disorder(s).
The doctor who was to do the biopsy explained that a biopsy of minor salivary glands is unreliable and that best way to determine Sjogren’s is through the major salivary glands. He said not all glands will be positive for Sjogren’s because not all of the glands are affected. If they would be then a patient would have absolutely no saliva. This is why they remove 3 or more glands. It is a “hit or miss” process and in patients who DO have Sjogren’s, only 50% will show positive in the minor salivary gland biopsy, but 90-95% will be positive in the major salivary glands.
I had to decide if I wanted to do as my immunologist wanted (whom I trust), or go with the direction this doctor (who knew very little about my history) whose specialty is head and neck reconstructive surgery.
Personally, since I had my medication in my purse, which I was going to pop as soon as the biopsy was over, I was not willing to wait any longer. I need some symptom relief. I have been poked and prodded through every orifice on my person, and I am not willing to wait any longer for another procedure (a bit more invasive) when the treatment I would receive was already in my hands. This doctor meant no harm and just wanted me to understand his understanding of the biopsies. He did admit that the treatment for various connective tissue disorders is the same (as I already knew!!!!) and the need to have a “name” sometimes is more for the doctor than the patient.
The “lip” biopsy was not that bad. The incision is down below my lower lip, in the tissue of the mouth and the swelling is not visible.
There comes a point in all of this testing that we need to say enough…or “uncle!” If there is enough evidence for treatment, then let’s treat. I understand why my immunologist wanted the biopsy, but I was taken back a bit when this new doctor took it upon himself to cast doubt on the biopsy order.
As a patient, we need to be our own advocate. We need to be able to weigh or options and go with our gut. I knew I was not leaving without that stupid biopsy!!!
I know how you feel. I had a lip biopsy and was told by a big University that I have Sjogrens and I went to John Hopkins Sjogrens Center and a Rheumy tells me that I do not have Sjogrens because he said that my lip biopsy did not look like your typical Sjogrens pattern. I don't know who to believe. I do know that I have very dry skin, dry eyes, dry mouth, an ANA of 140 titer once it was 320 with a speckle pattern I also have a balance problem, lightheadedness, upper thigh ache and flashing in my right eye. The Doctor at the Sjogrens Center told me I have Multifactorial. What is that suppose to mean? Thanks for listening.
I don't even know if I have Sjogrens. I was diagnosis with Sjogrens thru a lip biopsy at a big University Hospital and I went to the John Hopkins Sjogrens Center and was told by a Rheumy that I do not have Sjogrens because of the location of the inflammatory foci in areas of glandular scarring (and thus not counting towards a Sjogren's diagnosis). He tells me that I have normal functioning of your tear and salivary glands. That's why I have dry eyes and dry mouth with very dry skin and a few more symptoms. Is this Doctor for real? Location of the inflammatory foci. Why would that matter (the location) he can see that there is inflammation and/or glandular scarring. Take Care.
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