Could be MS, or somethign else, looking for opinions

[Ulanie]

Hi- I'm new to the forum (forums in general), I have been expirencing pain(s) on and off for about 7 months now. I have had an MRI ( don't know the strenght) on my head w/ and w/out contrast. It came up with 2 white spots in the "grey reigon" of my brain. My next MRI was of just my neck, and came back o.k.?. My nuro. now wants to do a LP (i'm not sure of this part) to "rule out MS". He is not convinced I have MS, but says that it is the only thing that my symptoms come close to. My ins. co. doesn't seem to think I am in need of any med. treatments or tests to figure it out. I think thier just stingy with the funds myself.
I have a list of things not working right.. it can take up 1/2 a page, but they only are on my right side, and as of now, not in my legs. But the "dugh" effect is in full swing so is the pain in the eye (R) only. the pain is about unbearable, and NO meds have touched it ( only tried pain killers, antidepressants, non-steroid antinflamitories ( sp?), and we're at about 20 kinds of everything, either they heave me a zombie, make me sick, or just don't work.
so in a nutshell, no one knows what is really wrong with me, even though most of my symptoms lead to MS, and all that is left is to let them LP me, or come up with a better answer.Please feel free to let me know what you think, I'd love any opinion on the subject.
Thanks in advancce
Ulanie ( Sick and tired of being sick and tired)
P.S. I'm a mom of 1 ( 2 1/2), 29 well 30 in 5 days, and about 140 now (lost 10 lbs in 2 months)

[Ulanie]

Hi- just to let you know, I have scheduled another eye exam for Friday. Well see..get it  LOL :o)
I'll post the news once I get it..
Loni

[LATW]

Lulu is the best one for advice!  Well so is Quix but I don't see her on here right now. I am on and off depending how I feel.  I was diagnosed without an LP but I did have optic neuritis.

My eye exam always includes them being dialated so the doctor can see the optic nerve. That is very important.

I've had EMG's and have had no lasting effect. Soreness but nothing else. I wish I could be of more help to you.  I think what Lulu said is the best way to do this.  Stick with your doctor because he does seem to be trying to find an answer.

I think the only other thing I'd do is get another eye exam and make sure it includes a vision field test and a check of your optic nerve. You need to be dialated for the optic nerve check.

Hope this helps a little.
LA

[Ulanie]

thank you for welcoming me to the forum, I can already see that this is a place filed with people who care and have a good idea of what to expect. Thank you for the encouragement, i am going to make an appt to have the LP done today or tomorow ( i have to take my little one the her dr today, so my day is already a bit busy).
I'll come back if any new news arrives, or I have any more questions.
thanks again :o)
Ulanie

[Lulu54]

Hi ulanie,
Welcome to our forum here - I'm so glad you decided to join us

The LP will extract spinal fluid to be tested for o-bands.  Those are particular to MS and nothing else.  There presence is only part of the diagnostic process but not all.  In fact, it is a growing trend by neurologists to NOT do LP's anymore.  

It sounds like your neuro is trying to work this through for you so stick with the process.  I know not having answers will drive you crazy, but the MS diagnosis is not an easy one to make usually and it takes time.  

I hope you come back and spend some more time with us learning about MS and this process.

my best,
Lulu

[Ulanie]

o.k.. i'll look into them in the am.. do you know if any of these are tested for in a LP, that is the next thing that my neuro wants to do, when i went to my eye dr after all of the eye pain started, they did a brief exam and checked the pressure, but didn't look in to my eyes, at the time when i had vision problems in the begining ( which were greater in tunnel vision and double vision than the constant pain now) i'm curious to possibly go back and have another check done more thurough to see if maybe they didn't look into things as well as they could of.. unfortunatly my ins doesn't cover more than 1 test a year, so out of pocket it goes.. and that is getting a little hard right now (i'm sure i'm not the only one)
any other tests that you can think of that may rule out any possible causes?I have had an mRI with and without contrast into the head- 2 spots in the "grey" matter,, a neck MRI-clear, an EMG electrocute my muscles in my neck to fingers-some muscle problems,, gone to the chiropractor-can't getthe pain to stop, wouldn't "crack" me, xray of neck-shows the spine turning in my neck a little like a spiral staircase, but not that far :o), B12 check, fine,swollen the cartliage in my ribcage?trauma from electrocution EMG?, tried over 20 medications in 7 mos. from antidepressants to anit inflamitory, to some inhibitors/blockers and non steroidial anti inflamitories.. and that is all my crazy memory can put together right now...
anyone feel free to think of anything that they may or maynot have had done that could answer any of this?
Possible more blood tests, which kind? diffrent MRI?

[LATW]

There is eye pain with Fibro and vision problems.  My mom has a very diffcult time with eye and vision problems. Her eyes are ok. No ON or anything like that.  she is diagnosed with FMS.

Your list sounds like hers! But that does not mean anything one way or the other in your situation because you are not her/she.  

Dealing with insurance is not fun and I sure hope you are able to get the tests you need to get this figured out.  By the way, systemic Lupus CAN be the cause of Optic neuritis. You'll need to google to look this up.  type this into the search Demyelinating Optic Neuropathy.  Lupus is one of the blood tests done when you have Optic Neuritis with not other diagnosis.

[lbradley35]

Hi,

I have had MS since 1995 and I have lost my vision temporarily in my Left eye multiple times. There is no medication that stops the pain.  I have been given the Solu-Mederol IV steroids many times and they used to make my list of problems disappear.  I can no longer take steroids due to being on Tysabri.  The only difference in your list and my list from 1995.......was that it my left side.  I have friends with Lupus and Fibro. They experience many of the same MS symptoms but not one of them has ever had the Optic Neuritis.  If you would like to talk more in detail send me a note.

Lori

[Ulanie]

Thanks for writing me back, i don't know much about  Optic Neuritis, except it has to do with the eye and nerves.I assume., i will have to look it up later to see, ther is so many that i don't know about and have to learn about.
I have looked int oLupus, i have no visible skin rashes. most have the "butterfly" rash that either comes and goes or is permanient.
The only thing on my skin is it feels mistextured on my right arm.. not bad, just diffrent. i don't know how to explain it. but in Lupus it also comes and goes in a diffrent way than mine does... and doesn't have optical pain or memmory loss - the "duhs"
so i have sorta ruled it out, also asked the neuro about fibro ( had to remember this from then and didnt' mention it in the last page) my husband asked and brought in a booklet onit, he states that it couldn't be what was wrong with me from the symptoms and test results.. also ruled out B12 defiencency from blood work. all the other blood tests done by my PCP were cleared too.
Thanks again fro lookin into it all for me again......
till next time..... :o)

[LATW]

I understand wanting to know! I presented with Optic Neuritis although I'd had symptoms for several years.

My doctor could never find anything really wrong with me. He told me if it was Lupus or MS or something like that it would eventually show itself, it did.

Lupus....have you been checked for that?  

[Ulanie]

thanks for your input- i appreciate ANY help. I have tried Cymbalta, which I have read does help with fibro., i can't take it, i have a hypersensitivity to almost all meds.( except ambien 10 mg, which is the ONLY reason i sleep) they have tried me on it, with no good turn out.my stomach won't handle it.
I also have the dropsies and the "dughs", which i have never had in this manner before.a few months ago i couldn't remember 1/2 of what i was trying to say or do, it was the biggest pain.... i hate to sound like ther is just everything wrong with me... but each week it seems to have something elas wrong. like about 3 weeks ago, i couldn't stand the pain in my ribs anymore,, so i went back to my PCP, he is pretty good, so i believed him that  had swollen the cartilage (sp?) in my ribcage.. it is still swollen, and the sternum ( zygomatic) is 2 to 3 times it's normal size. he noted this usually happens from trauma, but the only trauma  i had around the time was an EMG, which electrocuted ( sp?) the tar out of me. i jumped so high and it hurt sooo bad, that it is the only trauma that was applied to only the right side of my body.. the non steroid anti inflamitories aren't touching it, were on 2 kinds now, and no use.. so i know that some of the things wrong with me MUST be reactions to tests and RX's, i just don't now which ones..i should of found this place a long time ago, i'm sorry that it took me this long to try and speak to a group about it... i have been living with the "could be MS" for months now.. so I do feel better knowing someone out there has been in the same place I am now. Thanks agin for your opinion :o)

[LATW]

Man what a sentence!  I wanted to say that I had to sound like I am stuck on this one thing but...............

[LATW]

Hate sound like an stuck on this one but have you checked out the Fibromyalgia symptoms?

Your pain issues make me wonder. Especially the joint pain. I have MS but the pain I have is not in my joints and have to do with spasticity in my muscle. Mine is on my right side also.

As far as I know MS does not affect organs and I am not sure I'd know if I were having pain in an organ or not.

I do not know about gray matter white spots.  I know I am not helpful in this except to say you may want to check out Fibromyalgia symptoms.  
Those who have it have a lot of pain and joint pain. Pain everywhere.

LA dx'd MS 2008 Betaseron

[Ulanie]

About 7 months ago it started with the craziest things ever wrong with me at one time.
Note, all of this is ONLY IS ON MY RIGHT SIDE
I had vision problems
facial muscle problems
PAIN in my neck
PAIN in my shoulder
PAIN in my whole right arm, in all joints the most
PAIN in my ribcage
memory problems ( most agrivating)
concentration problems
sleeping problems
balance problems
coordination problems
the Drop-sies
PAIN into all my organs ( or it seemed)
all within a few days to weeks of each other..
and they are ALL still here after 7 months
they have good and bad days, but all still there.