LP Negative...Starting Over

[kerrtelli]

I spoke to the ms specialists PA today.  She said the VER and LP were negative so there is nothing more they can do to look for ms.  She said that the specialist wants to keep following me anyway.

She said he could rule in ms or rule out ms.

I am going to a new neuro and starting over.

At this point I wasn't even surprised to hear what she had to say.  All of m y symptoms are still there and I have to live with them either way.  Even though i would bet Monty that I have ms, maybe I'm wrong and t is something else.

My only fear is that if they keep ruling things out, I will be left with the really scary stuff.  The stuff i cant live with.  At least not for long.    I won't go there now.

Appreciate words of wisdom.  Thanks again for all of your help.

Kerri

[kerrtelli]

Thanks everyone.  I do plan on moving forward and seeing another neuro.
At least I'll get to see a neuro more than nce every six weeks.  I only saw this ms specialist twice.

Like I said in original post.  I have to live with it either way so I am taking it a day at a time and ow that what is meant to be will be.you guys are the greatest.

Kerri

[Sidesteps]

I am not sure I understand. Did you have changes between MRI's? What part of the criteria is missing? (I would ask this question.) The new criteria doesn't even mention the LP! I am not sure I'll get it unless the doctor use it to rule out other things that may be hiding in my CNS.  

Maybe what we are seeing with you is the difference between a doctor that is an MSologist vs General Neuro vs Neuro-Radiologists impressions of your MRI's. I wonder if these doctors aren't up to speed on the latest information and I'd wonder if they really know what is "typical" with MS. Subjective impression.

I would want to know what your current Neuro says; so I'd keep my appointments with him and make an appointment with a MSologist for a consultation to review you and your MRI's. Do your research then call the Nurse to talk about the doctor's care with their patients. I interviewed the nurse regarding my new doctor. I'm tired of wasting valuable time.

I know this is discouraging. You know there is something wrong at least. You have proof. That is half the battle right? They HAVE to hear you. They have to see you. :) I know your fear is something greater. I fear the same and we are wasting valuable time finding the answer. Try to take baby steps and reassure yourself that typically the other diseases progress very quickly. Take your few days to sort your thoughts, build strength and FIGHT. We are behind you every step of the way. ((((Hugs)))

[grannyhotwheels]

Hang in there Kerri... Another set of eyes is just what you need... Something is definetely wrong and maybe another doctor will see it clearly... Being in limbo land is the worst part of any disease... Just hang in there and know we are here for you...

I'll be praying,
Carol

[HVAC]

Kerri,
   For what it is worth the scary stuff would usually been ruled out by now. The follow over time is normal procedure in the MS diagnosis. All my tests screamed MS but my symptoms did not come and go so it took me forever to be diagnosed so it can go both ways. I am sorry you did not get an answer. The important thing is symptoms are being addressed they waited until I had been diagnosed a year to deal with symptoms.

Alex

[Lulu54]

Kerri, that is disappointing for you, but you've been here long enough to understand how difficult making this diagnosis can be.  I find it encouraging that you say this doctor wants to keep following you and hasn't shown you the door.

Have you taken the time to read the health page on differential diagnosis?  You might want to follow the link and read the entire article.  It is staggering the number of diseases that may look like MS in some way or another.

here is the link-

http://www.medhelp.org/health_pages/Multiple-Sclerosis/What-Neurologists-Must-Consider/show/1219?cid=36

hang in there, this is the tough part no knowing,
Lulu

[LisaJF]

Don't you dare let their indecision sway your course on knowing that there is something seriously wrong.  Keep on trucking onto the next person if they can't make up their own damn minds.

I'm so sorry for the disappointment and I'm sorry for the pain and suffering you're going through -- I've been there (still there too).

Hugs to you and know we are here.

Lisa

[metalbender]

Keep your spirits up Kerri...You're right about having to live with it either way...Maybe a diferent neuro can find something the other missed...Please keep us up to date on your situation

mb

[Deb61]

Kerri, I am sorry to hear that you came up empty-handed with this neurologist.  I don't have any words of wisdom, but just warm hugs for you and support.  I know how frustrating and disappointing that this must be.  I've been in limbo years before my MS diagnosis in 2008.  It was a time in my life that was just pure h*ll.  I know you won't go through years of this sh*t.  Your brain MRI shows problems and surely you will find a neurologist that can figure out what it is.  

Keep on keeping on and keep your chin up.  Don't let this doctor discourage you.  

Hugs,
Deb

[kerrtelli]

I meant to say "couldn't" rule in or out ms.