MS? not MS? its back and fourth

[cantsleep2007]

I am getting ready to have my first lumbar puncture on October 12, 2012. I must say at first I was excited because I so desperately need a diagnoses. I am going back and fourth with my feelings tho each day. Today I am scared to death, not really of the test because I have been poked and put through more tests than I care to go over but because I am afraid this will not give me a diagnosis. This will be the worst thing for me to hear at this stage of my life. My neurologist told me about 7 months ago.. no no this is defiantly not ms but after getting my latest MRI results she has abruptly changed her tone. Now I am headed for the lumbar puncture because I have widespread lesions that are not even on or around my brain stem. The neurologist tells me that these are not really typical lesions for what we would see in ms but we have ruled out anything else that could be causing my brain damage as she has put it several times over. Not Alzheimer not dementia although I have been told at one time it possibly was. Now my neuro just does not know and is back to ruling out ms. I am steadily going down hill, memory, concentration, double vision for well over two years now, balance issues, diagnosed now also with poly nueropathy as of two months ago, the list goes on and on.  All I know at this point is that I have much larger areas of damage then I had even a year ago and the doctors goal now is to figure out some way to at least slow this down. I guess if I have any question that I need an answer to the most it is, do ms lesions always have a pattern or a way that they appear(happen) is there a set way that the lesions happen? This damage my neuro speaks to me of is around the areas of memories, balance, sight, smell, the brain stem is new this time around so I just dont know what to think. Any input would be wonderful because I have nothing but fear today and I read some info on the lumbar puncture and I probably shouldnt have because those folks scared me to death with their bad experiences. Thank you for reading. Hugs to all and I hope your all well.

[supermum_ms]

Hi there,

The majority of people who have an LP dont actually have 'any' problems at all, either during or afterwards, the ones that do are thought to be the exception not the norm so try not to let your fear run amock! Tips are to drink caffeine and water prior and during the imobile waiting period, and for at least 24 hours try to not move around very much, laying flat helps minimise the more common issues people can have eg migraine.

Where your lesions are, is important in dx-ing MS, do you know anything about the Mcdonald Criteria? see for the location and diagnostic evidence needed for a CDMS http://onlinelibrary.wiley.com/doi/10.1002/ana.22366/full    

Cheers........JJ

[CanCanRun]

I'll disagree with atacker, and say that my lumbar puncture was terrible - honestly, if your doctor is willing, I'd request a Valium or Xanax or something (and I've had two kids with epidurals, so I thought it would be a piece of cake).

Anyway... From what I've read there is a "typical" pattern for MS lesions is:
-MS plaques display T2 hyperintensity
-Lesions may be observed anywhere in the CNS white matter
-Typical locations include the periventricular white matter, brainstem, cerebellum, and spinal cord.
-Ovoid (oval in shape) lesions perpendicular to the ventricles are common in MS and occasionally are called Dawson fingers, which occur along the path of the deep medullary veins.
-Most specific lesions for MS are noted in the corpus callosum at the interface with the septum pellucidum.

But, as anyone in here can tell you, there is no such thing as "normal" when it comes to MS. It can manifest itself in thousands of different ways, and just as no two person's disease will progress in the same manner, no two person's lesions look exactly alike either. Some people have lots of lesions and little effects from them, some people have lots of lesions and lots of disability, and some people have one one or two lesions and have a lot of problems from them... there is no telling.

And then there's the people (like me) that don't even have the O-bands show up in their puncture, but everything else points to MS.

This link has a lot of great information and images of different types of lesions  on it:
http://www.scribd.com/doc/8817608/MRI-Atlas-of-MS-Lesions

And Quix has several very insightful and educated posts about this kind of thing.  They are well worth reading. ;-)

http://www.medhelp.org/health_pages/Multiple-Sclerosis/Lesions-Lesions-Lesions/show/762?cid=36

http://www.medhelp.org/posts/Multiple-Sclerosis/mostly-neuron-death/show/1250913

Wishing you lots of luck for a non-painful LP and some answers for you!

[Maracamama]

Unfortunately, I'm not much help to you either but I wanted to wish you luck.  I had the same fear before having my lumbar puncture and my fears were realized when the results came back negative leaving me stuck in limbo, for now at least.

The lumbar puncture itself wasn't bad for me either but, like atacker said, plan to rest and lay flat for a few days later.  I went to work the next day and ended up laying on the floor of a co-workers office (he wasn't there) and then had to take the whole next week off.

Good luck.  I hope things go well for you and you get some answers.

Laura

[atacker]

Hi,

I'm sorry, I don't have much help for you on the information about the lesion pattern. I did just want to give you a word of encouragement and let you know the lumbar puncture was not painful; however, I did have a pretty bad headache after for a few days. Plan some time out to rest. Good luck to you and God bless.