My LP was positive....

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ConfusedGal
Regular Member


Date Joined Oct 2006
Total Posts : 77
   Posted 11/7/2006 2:44 PM (GMT -7)   
Nonspecific lesions and Positive LP...Doc said probable MS...So much for thinking it was the torn ligaments

uppitycats
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Date Joined Jun 2005
Total Posts : 2135
   Posted 11/7/2006 3:48 PM (GMT -7)   
I'm sorry. The positive LP really is a confirming thing, when you have "nonspecific lesions". At least now you know.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


ConfusedGal
Regular Member


Date Joined Oct 2006
Total Posts : 77
   Posted 11/7/2006 4:06 PM (GMT -7)   
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

pegleg
Regular Member


Date Joined Oct 2006
Total Posts : 257
   Posted 11/7/2006 4:17 PM (GMT -7)   
ConfusedGal: My opinion only ... not medical MD---Don't waste a day, review options and make a decision! Make certain you have a neuro MD you can relate to and who will listen to you. Take it from someone for whom they said "let's wait and do another MRI in 6 months from last" ... if you know what you're facing, than the major fear is gone and you finally have options. Take the bull by the horns and show him who's boss (YOU ARE!). Good luck!

ConfusedGal
Regular Member


Date Joined Oct 2006
Total Posts : 77
   Posted 11/7/2006 4:31 PM (GMT -7)   
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...

pegleg
Regular Member


Date Joined Oct 2006
Total Posts : 257
   Posted 11/7/2006 4:51 PM (GMT -7)   
ConfusedGal: It only sucks because the unknown is always frightening. Find neurologist that specializes in MS (my first one said he didn't know what was happening to me and to buy a cane and learn to use it). Mine is "not at this time MS" according to several neuro MDs but who do not specialize in MS. The one I trust is a professor at a med school and neurologist. Mine is leukoencephalomalacia or also known as periventricular leukomalacia. Certain areas of my brain are now dead and are disintegrating. It gives the same symptoms as an MS exacerbation, but the symptoms will not go into remission. Get your phone book, make a list of all neurologists in your area and surrounding areas, call each one and ask "Do you specialize in MS?" If not, keep calling. As I said, take the bull by the horns, know your meds, know your symptoms and keep a calendar (I require this of all my asthma pts --- I am a resp therapist) of each day detailing what is going on. Find the MD that's right for you and everything will fall into place (like a light being turned on in a dark room). We're all stronger than we think! Good luck!

mesea
Regular Member


Date Joined Nov 2006
Total Posts : 162
   Posted 11/7/2006 5:14 PM (GMT -7)   
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

Kimber
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Date Joined Jun 2005
Total Posts : 1852
   Posted 11/7/2006 5:51 PM (GMT -7)   
Hi Confusedgal,
 
    I'm sorry you are still a bit confused about all of this, and I hope things get resolved really quickly for you.  MS can be very difficult to diagnose sometimes and there are certain criteria that need to be met to get a definate dx.  Whatever you decide to do, know that we are here for you!  Heres an article that might help with the criteria. 
 
Allow Healing Well to continue to help others, clink link for details

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 11/7/2006 5:52 PM (GMT -7)   
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
Regular Member


Date Joined Oct 2006
Total Posts : 77
   Posted 11/8/2006 9:03 AM (GMT -7)   

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.


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 11/8/2006 9:36 AM (GMT -7)   
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 not a doctor, nor health professional, and don't pretend to be one, here.....


ConfusedGal
Regular Member


Date Joined Oct 2006
Total Posts : 77
   Posted 11/8/2006 9:55 AM (GMT -7)   
Hi Uppity,
 
Yeah, from what I have read, lesions + positive LP = MS... And the LP wasnt just a bit of protein or something. tHere were 4 actual o-bands found... I dont think he is concerned I dont believe him. I think he is more comfortable with me seeing a specialist. He himself said "Well, I would be happy to continue treating you, but I specialize in stroke. You might do better with an MS specialist." So I will go to an MS specialist..Hopefully the specialist can confirm this so I can move on with my life... He didnt want to tell me I have MS. He said this all "leads in the direction of MS." Not sure what that means...

snowdog
Regular Member


Date Joined May 2006
Total Posts : 137
   Posted 11/8/2006 10:08 AM (GMT -7)   

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.


ConfusedGal
Regular Member


Date Joined Oct 2006
Total Posts : 77
   Posted 11/8/2006 10:14 AM (GMT -7)   
HI Snowdog,
 
WHat tests were you positive for?? MRI? EP? LP?? Considering my numbing symptoms, lesions, and very positive LP, I am hoping a specialist can claify it sooner than later.

Motown John
Regular Member


Date Joined Jun 2005
Total Posts : 475
   Posted 11/8/2006 10:31 AM (GMT -7)   
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

pegleg
Regular Member


Date Joined Oct 2006
Total Posts : 257
   Posted 11/8/2006 10:49 AM (GMT -7)   
ConfusedGal: I have 5 lesions on my brain, 0 in LP, but all symptoms of MS (according to neuro). Until yesterday, he stated that the periventricular leukomalacia that I have causes the "MS symptoms", but not really MS since they will never go into remission. Yesterday, he sent my primary MD a fax from last visit (easy for me to obtain my reports since I'm in med field). In the report he stated that he wanted another MRI this month ... I couldn't really understand why until I read the report ... seems he thinks we may definitely be looking at "CNS demyelination disease". The difference between it and MS is confusing. I'm more concerned w/PVL as it has caused dead areas on the brain. There is also a sight on the brain which shows I experienced an ischemic stroke back in Sept '05. Apparently my body compensates very well. Good luck on your tx!

ConfusedGal
Regular Member


Date Joined Oct 2006
Total Posts : 77
   Posted 11/8/2006 1:09 PM (GMT -7)   
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!!

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 11/8/2006 4:05 PM (GMT -7)   
Hey ConfusedGal

That doesn't sound terrible at all. Having some sort of answer that are concrete are the thing we're all searching for. It allows u to find a pathway and set u'r course....move on with u'r life. It's sooo frustrating, but u'll make it thru all this and it'll be ok in the end...as hard as that may be to believe now. Hang in there!

rhonda

snowdog
Regular Member


Date Joined May 2006
Total Posts : 137
   Posted 11/8/2006 4:54 PM (GMT -7)   
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.
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