My LP was positive....

Nonspecific lesions and Positive LP...Doc said probable MS...So much for thinking it was the torn ligaments

Hi

OK I am more calm now...Doc still says probable. Hasnt confirmed...Said, I have three options

1. Start treatment

2. See MS Clinic and get an opinion

3. Wait until Jan and do another MRI to see how it progresses in order to start treatment

I am all confused...He said its likely I have it, but he didnt confirm. Said I should get a second opinion... I dont know what to do...Does this mean I have MS for sure?? I dont know...I have lesions and a positive LP... MY EP was normal. THis all sucks...

Confusedgal,

I can't really say that I understand what you are going through because my diagnosis was fast. I only waited 2or3 weeks to have the probable confirmed to definite. I blamed all of my symptoms on an old head injury that I have. I still don't know which ones are from the MS and which ones are from the head injury. What I'm trying to say is that those probable weeks were some of the hardest of my life. I don't know how you and others here handle months or even years of being in limbo. Please know that I am hoping and praying that you will get a definite dx soon. Like Pegleg said knowing is much better than not knowing. Once you know you can do something about it. Good Luck and stay strong.

mesea

Hey ConfusedGal

I'm so sorry to hear it's probable ms. As Uppity said, at least now u know. I've not been dx'd with anything, but i can tell u that from all i've read and heard from others as well, the sooner u get on one of the disease modifying drugs, the better. At least start to investigate them and get an idea of which one u'd like to try first. U should prob really consider getting on them as soon as u can since he's saying u can. U'll have another mri very soon again anyway. Docs set them for repeat at different intervals, 3 months, 6 months, 12 months. Most likely since it's probable he'll want to go ahead and repeat it in Jan whether u'r on one of the CRABs or not. In the meantime, yes, consider finding an ms specialist as well. The suggestions are all good, but in reality if it's ms u need to be on the med. U know we're here for u and i'm praying for u and u'r strength thru all this. Take good care.

rhonda

ConfusedGal said...

Hi all

Thanks for the info...Pegleg did you have a positive LP?? So again, I have 5 lesions and 4 o-bands in my LP. My Visual EP was normal. Isnt the positive LP with lesions kind of confirming?? But he still said most probably but wants second opinion. The MS clinic called me and my appt is Nov 21st. So its not far away and thats good...Next week I have an appt for my torn ligaments...Must deal with that too.... My plan is to see the specialist and get their recommendation and maybe a confirmed diagnosis... And then eithert start treatment based on what she says or wait until Jan for second MRI. At this point, its just confusing.

Does the DOCTOR want a second opinion, or is he sensing your doubt and confusion, and suggesting that if you don't believe him, your choices are to go to an MS clinic and get a second opinion?  Generally with a positive LP, and lesions apparent on an MRI, combined with clinical symptoms (stuff the doctor can see and test for in his office), it's a pretty clear view --that you have MS.  He's saying "probable" because doctors like to watch and wait for a second flare or exacerbation to occur before finally committing,

but it appears that he's committed to it, if he's suggesting you start on meds.

If I were in your situation, I'd probably not wait for another MRI in January, but start one of the medications right now, early, before indeed you get another, perhaps more debilitating exacerbation, or flare.

As for the torn ligaments -- as you've discovered, having MS doesn't mean that you can not also have other things wrong. It does indeed make it confusing, as you'll need to sort out what symptoms come with the torn ligaments, and what is attributed to the MS.

It's good that your second appointment is soon. I'm convinced that the sooner one starts on the meds, the better the chances of slowing down the disease early.

I am with the others on this issue. Back in June,
I recieved the "probable" Dx. I didn't know what
to do...then.  I wanted someone to look me straight
in the eye and tell me I had MS, before I started
down the road.

I had more MRI's, more blood tests, more of eveything.

As a result, in September....I was told by not one
but two Neuro's that I had MS and I should have been
on a MS Medicine criteria since June. Then they showed
me the new spots on my brain with the others they found
in June. What I didn't do cost me.

Do not make this mistake. Start on meds now. If for some
reason down the line they are convienced it is not MS, you
have wasted some money and little else. If you do indeed have
MS you have bought some invaluable time.

Wednesday noon

 

Dear Confused Gal:

 

It has been close to 20 years since I went through the whole MS dx deal.  I remember all the thoughts you are having.

 

Maybe contact state MS Society office and ask for a refferal to a MS specialist neuro?

 

Just a thought.  John

I talked with my doc again. I asked him whether I have MS. He said "If i knew for sure I wouldnt recommend that you see a specialist!" He said at this point he thinks "possible or probable." Gave me different options in terms of other dymylenating conditions. Said he cant say and it could take a long time to get a definite answer. (second episode and more lesions in different areas...) I dont understand. I have numbness for 3 months. I have 5 lesions, and my LP is very positive... He said the MS specialist may feel differently though. He told me about treatment meds etc. He didnt want to say anything really... He did say he had previously shown my MRI to the specialist I will see and she said that there was too much activity to be called "non-specific." This was before my LP...So lets see what she says...As terrible as it sounds I would love a diagnosis so I can move on in my life!!

Rhonda is right. We have all been through this frustration. We all thought we would lose our minds
before something concrete was said to us. It is part this disease. As far as my probable, it was 4
original lesions, symptoms that I now know was an excerbation, Optical Neuritis and flunked my VEP badly.

I went through 3 neuros and dozens of tests to rule out as much as they could. It took months. I was
so depressed (which also comes with this mess) I could barely deal with the world. My regular doctor
finally gave me meds to help deal with the symptoms and the depression/anxiety and exhaustion
That's when I started to slow down and wait. Thats when I worked with my med team instead of against them.

I now have learned that there are people that have been waiting for months, or even years to get a final
Dx.

My Med team now, explained to me that anything as confusing as MS and its relatives/look alikes are without
a doubt the hardest thing to Dx. The main factor is that although we suffer from some simlilar symptoms, some
have stronger, some have weaker, some have different, some have huge leisons, some have barely any, some
have bands in the LP, others it won't show for years. The list goes on.

I often wondered why the MS ribbon that I now wear, looks like a thousand Crystals not solid like pink or blue or?

"Not everybody is the same and because multiple sclerosis affects each individual in so many different ways, the National Multiple Sclerosis Society, has adopted the “Prism Ribbon” to represent multiple sclerosis. This ribbon changes colors with movement, light or position.

The changing colors of the ribbon signify that multiple sclerosis is an ever changing and unpredictable disease seen in different lights and different ways but is ever constant."

So goes the Dx of MS.

You will make it through all of this. Try to relax and concentrate on family, work or whatever makes you happy. The time will pass quickly if
you let it. "to the specialist I will see" says it all. You have a team already working for answers. If it is going to be weeks or your symptoms
are to much, call your doctor (doesn't have to be a Neuro or MS specilist)and tell them, convience them, nag at them.....to help you with
your symptoms. Once you feel better, you will have a better chance controlling your frustration.

Good Luck, we are all pulling for you and you can vent here anytime. We all have.