HELP!

Okay, what is going on?  On July 13, 2010 the neurologist looked squarely at me and said, "This is Primary Progressive Multiple Sclerosis.  Your brain MRI indicates it clearly."  Now, 2 months later, another brain MRI, a lumbar spine MRI, and a cervical spine MRI all with and without contrast, 22 vials of blood drawn looking for everything but my Aunt Tilly, and a visually evoked response test, and he tells me today that the lesions are all still there, but everything else came back normal except that I need B-12 shots, that the bloodwork ruled out stroke or vasculitis, and a lupus thing that was barely above normal range.

Now, I am waiting to have a lumbar puncture because he says he still believes it is MS, but can not say with certainty until the LP is done.  I asked what  he will think if the lumbar puncture is normal, and he says he does not know.  How bad is a lumbar puncture, anyway?   AHHHHHHHHHHHHHHHH!

I feel like I am on an emotional roller coaster and can not get off.  The foot drop is on both sides now, but more pronounced on the left with significant weakness on the left.  The fatigue is overwhelming.  I am so totally done I can not even begin to express it.  Where does it go from here?  

Beth

[Lulu54]

Hi Beth,

It sounds like this neuro doesn't know what to think himself so how should you know what is going on?  This is so unnecessary. It sounds like your clinical presentation of symptoms, along with the MRIs ar enough to give this MonSter a name.

If you have read much here, you already know that MS is a diagnosis of exclusion - they have to exclude every other possibility, which is why the neuros will almost always do this huge battery of tests that require almost all your blood  - not really, but it sure seems that way - to be siphoned off. I thought mine was excessive with 14 vials, but 22?  That might be a record.

There is so much anxiety about having an LP.  The truth is most of the time they are done without complication.  The key is to understand what they are doing in the procedure and doing your best to relax.  About one in 7 LPs creates a problem with headaches, due to a leaking of the spinal fluid.  So keep in mind that those odds are in your favor.

I had my LP in my neuro's office without a bit of trouble or any special equipment.  It was over in about an hour and I was on my way traveling home.  Others have them done in the hospital, with additional equipment at hand to assist.  It all depends on your doctor's preference.  If you want more LP details, we will be happy to provide them.

The LP doesn't prove or disprove MS - it just is used to support the diagnosis.  I hope that makes sense.

Hang in there - it really does sound like your doctor should be making something official soon.  I'm sorry both legs are bothering you - I hope this clears up or at least slows down.

be well, Lulu

[maestro1959]

Thank you, Lulu.  There is just so much going on right now.  If I am not going to a doctor appointment, then PT, or something like that.  I hardly have time some days to think.  Hell, I am still trying to digest the unofficial diagnosis, much less all the tests for an official one.

I am trying not to stress over the lumbar puncture, but any thoughts of it make me quiver.  Because I have a continuous headache as a result of the assault last November, I worry.  My insurance requires it be done in a hospital.  So, I guess that is good.  Do they give you anything to like sort of knock you out?  I really do not want to know what is going on.

Thank you, again.  It is all so new that everything seems to bring more questions.  I have zero experience with this disease.  There has never been anyone in the family with it.  At least, no one with a diagnosis.  I checked both sides of the tree.

I appreciate your kindness,
Beth

[Sparkysarah]

Hi Beth

I think there are so many people on here who will really understand your frustration with doctors! It is so hard waiting to find out and even worse when they say one thing and then change their mind.

I have not had a lumbar puncuture as my neuro said it was not necessary as clinical history and MRI scans confirmed dx for me..but lots of people on here have had them so you could always put lumbar puncture into the "search this community" icon on the top right hand side of page and you will find some other helpful posts.

I am also not aware of anyone in my family having had multiple sclerosis and my feelings are that there does not seem to be any hard and fast rule...again there are lots of people on the forum who have relatives with MS.

Keep your courage up and let us know how you get on.

With love Sarah xxx

[Lulu54]

If it helps, I wrote about the details of my LP in this journal....

http://www.medhelp.org/user_journals/show/42150/My-LP---in-all-the-details---not-new-but-here-for-reference?personal_page_id=865800

No, they won't give you something to knock you out because it is important that you be awake for the procedure.  A skilled doctor or radiologist will have no difficulty getting this done with minimal discomfort to you.  The worst part to me was the injection to numb the area- much like they do at the dentist!

good luck and stay in touch, Lulu

[Ndobbins]

Drink...drink...drink caffeine afterward to avoid a bad headache & then if you are like me you might still get one. My LP was ok other than that. My neurologist said it didn't show MS. I have new symptoms since then & am going to a new neurologist this week. Don't give up & don't worry too much about the LP. Just another test.

[maestro1959]

Thank you for the encouragement.  I am going to try not to over think this.  Thank you, too for the heads-up on the headache.  I will definately take along a bottle of soda with caffeine to drink after the procedure.  For some reason, my insurance only pays for this if performed in a hospital.  So, that is where I will have it.  I am now just waiting to be given the appointment date and time.

I will keep you posted.
Beth

[Ndobbins]

Not sure if because of insurance but mine was done in a hospital too. Oh, one more thing. I have to take a regular 325 mg. aspirin each day & I was sent home the first trip because I wasn't told not to take it that morning! I told the person scheduling it what meds including it. Just be sure you tell them & go over the list to make sure they listen to you. Mt. Dew supposedly has more caffeine than coffee too.

Good luck! Take care!
Nancy

[meg321]

I know i went into it terrified and almost ran away....i don't  know why we do that.  But she talked to me for awhile and i was so much more relaxed....and it was really a piece of cake and, like Lulu said the worse part was the numbing, it was like getting novacain (sp.?) from the dentist.

I must say it is so exciting just to get it over with, i had built it up in my head for a long time.  

And if you ask ahead of time they will give you something to relax you.

good luck, meg

[PastorDan]

Honestly, I don't even remember having anything to numb the site beforehand.  I was told to drink plenty of fluids before the test, which wasn't difficult since I usually drink a gallon of water per day anyway.  It was suggested that caffeine might help prevent the dreaded headache, so Nancy took me through Tim Horton's drive-thru on the way for an extra large English Toffee cappuccino, which I was still sipping when we went back to the procedure room at the neuro's office.

His NP did the procedure.  It was explained to me that she does several of them a week, and is thus highly experienced, and has no trouble with them at all.  Made sense to me, like the "oil change specialist" argument for those quick-lube places.  As it turned out, I had no trouble whatsoever.  A minor sting upon initial insertion of the needle, IIRC, just like any other.  Carried on normal conversation the whole time, while laying in a fetal position on the exam table.  I laid back in the partly-reclined passenger seat of the car for the drive home, and after that, I was fine.

I agree with Lulu, though: You have all the evidence necessary, in the opinion of these two non-medical-professional observers.  Sounds like your neuro should read over the McDonald Criteria.  My LP was deemed normal, so what did it tell us?  Only that an LP wouldn't tell us much.

Peace & blessings.

[momma2abcd]

I also went through a few test as most of us do. My LP was the final (everything else was normal) except for my MRI and my LP and yes I was scared as heck.

I had a lesion on my spine and a 2 on my brain. Not sure how many ogl bands but enough I guess.

My Dr. did give 2 pills to take 30 minutes apart to help me relax. it helped a little.

It wasnt all that bad like I thought though cause he had me under an xray machine while doing it and I was watching the screen too as he was doing the whole process. I did get the  headache that was was worse then the actual LP. So drink lots of fluids before and caffine after. Didnt help me but oh well.

Best of luck and stay encouraged