Remembering symptoms from the past and wondering if they are clues??

[santana8]

I found out after the attack two years ago that I have Meibomian Gland Dysfunction. Meibomian glands are in your eye lids and they secrete the oily substance that helps create the tear film in your eyes. When they are not functioning properly they get clogged and the tear film becomes unstable and your tears evaporate too fast this in turn causes chronic dry eye syndrome. I also found out that I have blepharitis, which is inflamation of the eyelids which I read  that is most likely the cause of the Meibomian Gland Dysfunction. During the attack I suffered a visual field defect and  it is likely that I had retoubular Neuritis according to my neuro opthalmologist. The weird thing is all of these disorders are on the Paroxetine side effect list.  I was started on the Paroxetine 6 weeks before the onset of neurological symptoms. I have always believed that the medication switch had something to do with this attack, but the only explaination that my Neuro could come up with for the lesions  in my white matter of my brain was a possible complication from heart by- pass surgery I had when I was 18 months old. I had what is called a PDA. My neuro said that being on the breathing machine during this surgery could have caused these lesions, but that something caused this sudden onset of neurological symptoms in April 2006.

Now I have wondered if the lesions are indeed from the heart surgery and maybe what happened in April 2006 was indeed a medication reaction. But I remember having swollen eyelids when I would cry that would last 24 hours. I also remember having headaches behind my eyes 2 or 3 days before my period. And I also remember that my left eye would squeek when I rubbed it almost sounded like it was loose in the socket. Also an occasional numb finger or toe or tingling on my forearm, and some leg muscle weakness. These thing took place about one year before the attack.

The visual field defect is getting better, but the dry eye and Meibomian gland dysfunction are not getting better. What I noticed as I was doing the warm soaks, scrubs and massages of the eyelids to unclog these glands was that this white stringy stuff came out of my eyelids and my eyes fill up with tears. I guess that is unclogging them. But I noticed something else , that after I unclogged them the sueeking left eye dosen't squeek anymore and the head ache behind my eyes are gone until they get clogged again, then after the same treatment they go away again.I am starting to think that all of the pain I was feeling behind my eyes and the squeeking left eye was this condition all along, and this has been going on for a year before the attack.

I am in the  process of getting checked for Sjogren's syndrome which list most of these symtoms. I found out from Quix last week that Sjogren's can also cause white matter lesions and is one of MS mimics. The neuro also found some arthritic/ degenerative stuff in the back of my neck wher I have had a lot of stiffness, and I also have pain and stiffness in my knees,and hips. Arthritis is strongly related to Sjogren's and so is Raynaud's Phenominon, which I have a 16   year old neice who is being checked for this now,and I think that both these disorders have a enheritance factor.

My dx is ADEM and I am being watched for MS. Then there is the question of the paroxetine side effects and the heart surgery. I don't know how they are going to figure out which one or ones of these things have made me sick. There are so many possibilities so how do they know which one it is? All I know is if it was ADEM then why was I having these eye symtoms a year before the attack that are consistant with both the  medication and Sjogren's. And if it is MS then why haven't I had any more lesions or attacks? I am going to a hematologist to check my blood for clotting to finally completely rule out stroke this week. And next weekk to my opthalmologist and a reumatologist to rule out Sjogren's. Am I doing the right things to work through this mess.  I am getting so tired of this puzzle and it seems that I am having to initiate all of this ruling out and I thought that was my neuro's job? Sorry this is so long but I really need help to sort through all of these things that seem to be hetting to big for me.

Santana8

[Quixotic1]

Hi, and Welcome to our forum!  You have really been put through the wringer, haven't you.  

You posted at the end of an old thread from 2008.  I hope you begin a new discussion and tell us all about yourself.  It sounds like you have been diagnosed with MS.  You had that diagnosis taken away and the new neuro just dismisses you.  You saw the Mayo Clinic in Rochester and they diagnosed migraines.  With your list of symptoms I would think that migraines, even atypical migraines, sounds dubious.

We have not had good experiences with the Mayo Clinic.  They seem to be dismissive.

I know that we all are going to recommend that you find a new neurologist that you can have faith in.  No matter what your diagnosis, you need help with your symptoms and you need to be able to have confidence in your neurologist.  There are definitely good ones out there.

Please post a discussion of your own so we can get to know you!

Quix

[noisel]

I have been dx by nuerosuergon with ms 6years ago i was referred to ms doc who thinks its not ms i have all infact maybe more symtoms then they could count including brain lesions but yet my ms neuro things its not ms. Am so sick all the time i cant' begain to tell you have
bad i feel but most of all i feel that my neuro is wrong in my dx. i really
believe i have ms sometimes this doctors have ego trips for what ever
reason especially if your the type of person that dose her homework and gets informed. He would give me dx of ms but he'll say i have post
infectious encepholemyitis which to me it may just as well be ms. I
dont want to sound like i want this dx but i might as well have it am
always so dare sick and can't get out of bed so tired muscle aches
everymuscle joints headaches blurred vision incontinent urinary urgancy spastic twitches congnetive problems short term memory
and so on. All i can do is sit and cry. had one nuero that was tx me
for ms (avonex,betastrone) i had really bad flu sypmtoms and was taken off the meds then i just went into denial and back and forth to
this day i do not have many good days always something ive been
thru so many testings am tired of that too. right now am starting to
get more and more depress. I could understand all that youve gone
thru. and honestly when does it end or does it end. by the way Ive
been to the mayo clinic in mennesota and there conclusion was
migraines my ms nuero didn't think so. oh well what to do what to do
mari

[santana8]

Thanks for the support, I guess hitting the two year mark on April 2, made me realize exactly why I am tired. If they had gotten me in there when it was going on instead of eight months later they may have seen something on the blood test and spinal tap. I know it could be worse so I don't want to complain, but I am so tired that I feel like  a year long vacation is the only thing that could help at this point. I get so tired of going to the doctors , so many doctors and them looking at me like I am this puzzel with missing pieces and that lost look on thier faces. It makes me feel like no one is ever going to fit the pieces together and figure this out. And why am I not fitting into any one thing? There is an answer, I am the answer if any one of my doctors would take the time to look at the whole picture they might figure out what it is. There are a lot of my symptoms that I feel are not being tied together. Maybe they are not related but maybe they are the clues that they are missing. Well maybe after I get the clotting risk ruled out this next week and go to the reumatologist after that maybe one of these two specialist will see something that clicks, I hope they do anyway.
Santana

[slightlybroken]

I think your doing everything you possibly can right now and your trying to get to the bottom of all of this. It should be your neuro's job to be ruling out these things but I'm sure you know by now, that's not always the case. I would like to go to a doctor, for a change, and know that they will do everything they possibly can to find an answer but I just haven't found that doc yet.

I know it's frustrating. Hang in there and know we are all out here pulling for you to find these answer. There is so many possibilities and that's frustrating in itself. I know. I just wish it was something easier to DX but think of it this way. The more you eliminate, the closer you get to the right DX.

I know your tired just keep on pushing. I still have hope that we will all find out what's going on with us so we can start some kind of treatment and be able to move on. Until then, I'll be thinking of you and wishing you the best.