Quixotic1....... Please help

[MrsMais]

I posted this before but would like your opinion.


Mri reports: scattered foci of increased signal within the periventricular but mostly subcortical white matter on both cerebral hemispheres are nonspecific.  Demyelination possibly from multiple sclerosis.

My symptoms are left side weakness, left arm doesn't swing, I'm always tripping, left leg constantly feels like its vibrating and creepy feelings.  Seeing double. suspect for optic nerve damage, tremors and spasms in left arm and leg. itching and burning that doesn't go away with allergy medication or cortisone shot, constantly going to bathroom because I always feel like my bladder doesn't quite empty.

I believe MRI of Cervical showed no lesions, just a well-marginated hyperintense focus seen within the T1 vertebral body on all sequences demonstrating areas of enhancement that they believed to be a mixed fatty and vascular matrix hemangioma.

I have been seeing a neurologist, will be seeing him again on Friday.  The ophthalmologist says that I'm suspect for optic nerve damage, whatever that means.  

I have not had an LP and don't want to, scared.  
Just tired of the pain and run around and Doc's thinking I'm depressed and anxious and so on and so forth.

[Momzilla]

Let us know how it goes!

Chris*

[MrsMais]

I'm not in the least bit confused by what you have taken your time to share and explain to me.  
I'm confused by how inadequate my neuro is, which after tomorrow he will NO LONGER be my Doctor.  Just going to see what he has to say about this last MRI.

Again thanks Quix and God Bless you.

[Quixotic1]

Well, it may well be.  I suspect that your lesions are not "perfectly classic".  The neuro with little MS experience and who is not keep up with the research may just not know enough to relaize that MS plaques CAN BE ANYWHERE in the white matter.  Statistically they do fall into common locations (of which periventricular is the most common), subcortical, corpus callosum, etc., but it is folly (bordering on stupidity), to dismiss the diagnosis of MS because the lesions "aren't in the right place."   I had just one lone lesion in the frontal lobe which was disregarded for two years, costing me two years of more disability before my new and improved MS Neuro told me that lonesome, out-of-place lesion was a classic plaque.

If you're confused it's not because I gave you bad info (at least not this time, lol).  I can give you 1000 cites about where the lesions occur (please don't ask me to!).  Look to see if there is an MS specialist in your area .  There are two place to look.  The first is less reliable, because the list is made up of doctors who put themselves on the list by claiming they saw a large number of MS patients.  This is your local MS society.  Go to your chapter's website and see if they publish a list for the area.  (Heads up to everyone.  My "evil" neuro was on the MS Society's list!!!)  Here is the link for that:

http://www.nationalmssociety.org/site/PageServer?pagename=HOM_FIND_homepage

The list that will have the most reliably up-to-date and expert MS specialists will be affiliated with the (International) Consortium of MS Centers.  This is the group that collaborates on the recommendations, protocols, research and such for the diagnosis and treatment.  I would have a doc from one of these centers behind me if I could.  We have seen too many examples of people getting inferior diagnosis and treatment from regular neurologist who have to split their time between hundreds of different types of neurologic diseases.  Here is the list to the CMSC:

http://www.mscare.org/cmsc/index.php?option=com_center_directory&Itemid=528

Hope all this helps.  I hope the confusion ends up being a constructive one.  Quix

[MrsMais]

I forgot to mention that from the first MRI I had done, the reason the neuro said he  didn't diagnose MS was because he said the lesions were not in the right place for it to be MS.

You wrote that the periventicular region and the subcortical region are common in Ms I'm so confused. (thats were I have them)  I think I need a new Neuro, seriously.

Thank you so much Quix. God bless! Stay healthy!!!!!!!!!!!!!!!!!!

[Quixotic1]

Hi, I didn't realize you had an appointment coming up, I'm so sorry. I live on the Left Coast and I JUST now woke up.   Well, you're really going through a lot.  Of course you know that I can't diagnose anything online, but I can talk about what you have told us in the context of MS.  The MRI is very suggestive of MS.  Even though they always say that "periventricular" is the most common location for MS lesions, the lesions can occur anywhere there is white matter.  And the "subcortical region is another common location.  So MS is a definite possibility from the MRI.

Your symptoms of arm weakness, tripping a lot (do you rip more with one particular foot?  Also any problems climbing stairs - as you near the top either foot not want to make it up onto the last couple steps?  The urinary urgency, but with the feeling that you can't quite emtpy the bladder is common in MS.  It is a lack of coordination between when the big bladder muscle contracts and when the tight sphincter relaxes.  When the nerves signals are delayed (when the myelin is damaged) the bladder just doesn't seem to get anything right.

I've been reading about parethesias.  And bouts of intense itching which can't be relieved by things that relieve itching which ic casued by skin conditions is also well descibed in MS.  Even cortisone won't help, because it is not an infflammation in the skin, but a form of "nerve pain".  You may need a medication like neurontin or Lyrica for the tingling, burning and itching.

So your suspect for optic nerve damage.  You definitely need a Visual Evoked Potential to see if there is any current or previous damge to the optic nerve.  Even old damage that can't be seen on exam can be picked up with a VEP.  That's important.

The neurologist should do a good long exam to see if you have any defects on your exam, like hyper reflexes or a + Babinski test.  This will provide further evidence.

Now....about the LP..... it is such a shame that so many people have such a fear of it.  For one thing, the headache and/or low back pain are usually easily dealt with.  They are no big deal in the context of how disabling the disease you are trying to diagnose is!  The other thing that I found when I was in medical practice was that many pople believe that a spinal tap can easily lead to brain damage or paralysis.  This is NOT TRUE.  Back in the 50's when they were doing LP's to diagnose polio - people did become paralyzed afterward - but obviously to us now - FROM the POLIO.   The same is true for meningits - it's the disease that casues the brain problems, NOT the LP!  


I have done at least 1000 LP's in my life and never saw a child have a problems with one.  When they do it they slip the needle into the spinal column SPACE - whcih is well below the cord.  The only things in this space are the fluid and the free-floating nerves heading to their exits.  They don't don anywhere near the spinal cord.  Most people don't know this.  It's really a simple test.  Becasue I have some arthritis in my back, they did the LP in the radiology department under x-ray guidance.  It was a painless, breeze.  Doing it this way he was able to use a little, tiny pediatric needle.  I didn't even have any tenderness where they did it.

They may be able to make the diagnosis on the basis of MRI, VEP and physical exam.  If so, fine.  But, it they need to do a LP you need to really think about what it is they are looking for.  in the US they do thousands of LP every day!!!  I really mean 1000's if not more.  If need be you can ask for some sedation, but, I still consider the LP to be a minor procedure.

As far as yur cousin with MS, as you move away from first degree relatives, you risk drops close to the general population.  Your risk from having a cousin with it would not be greater than about 1 in a few hundred.  Even with a parent with it your risk is between 2 and 5%.  And even in the same family they have not found a correlation between how severe the disease is.

I also am sick of doctors thinking you are just depressed and anxious.  Now, with ME looming in your mind, you may be a little of both of these.  If you weren't, I would have to wonder.  But, aniety and epression do NOT (I repeat DO NOT) cause optic neuritis, limb weakness, burning and itching etcetera!  

When you're seen tomorrow, have the course of what you have been through, written out clearly and in list form - a timeline.  Note when each symptom happened, along with what other symptoms, how long they lasted.  Note any periods during which you were okay or stable.  Make a note of when you saw doctors and what they said and have your results with you.  We have a post which I will find and bump up to the beginning called "Timeline 101".  If you would read it, it will give you a good idea of how to describe what you are going through.  

Be sure to come back and let us know exactly how everything went in the visit and we can help you go from there.  Welcome to the forum.  Good luck tomorrow, Quix.

[MrsMais]

Don't forget me Quixotic, I'm going back to neuro tomorrow (Friday 9/13/07).  Any advice would be appreciated.  Glad your feeling better!!!!!!!!!!!!!!!

[Quixotic1]

Hi, I'm back on the forum and I'll talk to you at length tomorrow.  It will all be okay.  Quix

[Nanners123]

Mais:  Sorry that you are having such a hard time. Sounds like the LP is a good next step, I know it is scary, but several of us here have had one and are all still here to talk about it. It should be a very quick test. Just make sure you rest as they instruct. I made the mistake of getting up and around too early and was knocked on my butt. Good luck with docs and I hope they find some answers for you. There is a wealth of info in this forum that should keep you busy enough until Quix is up and around again. Keep reading and keep the faith!

Angeline: Funny you should mention Castochondritis, I had that back in 2001 and 2002. Resolved with PT however, I still wake up with very stiff chest and dry cough. I have various other symptoms, however, Neuro says nothing big, bad or ugly in my brain. Says something is going on but doesn't know what.

I have heard of the MS hug but have not heard that Castochondritis was linked to MS, have you read or heard that it is. I have not yet had an MRI of C-spine and the Brain MRI will be done again in October. Hopefully after those tests I can some answers.

Nancy

[sllowe]

Hi MrsMais,
I wanted to add a welcome to you.  It sounds to me that your Neuro is doing a lot of tests, and there are a lot of them. Hang in there through it the best you can. Many of these horrible symptoms will make you feel anxiousness, so don't feel it is all in your head.
I wish you well, and hope you feel well soon,
SL

[angeline59]

This is my first post here. Looking back, I've had MS-like sx for many, many years. But within the last year it's really been through the roof - electrical shock sensations/numbness/tingling/pins and needles/burning/muscle spasms in my feet which have now moved up to include my thighs and hip region. These sx never, ever subside. Almost every day, I wake up with something new, like numb mouth, blurry vision in my left eye, costochondritis, and many more. Trouble is, the new symptoms don't go away either, they just add on to the old ones and never dissipate! When this started, my PCP ordered a brain MRI w/o contrast, which showed multiple lesions in both hemispheres, cortical and subcortical. Since I have had migraines for 20 years, he chalked it up to that, and sent me on my way. As the sx got worse, I referred myself to a neurologist. He did another MRI, this time w/ contrast and included a cervical MRI. There were still brain lesions, and new bright spots, but since the cervial spine was clear of lesions, he won't diagnose me without an LP. I'm probably being ridiculous, but I'm just terrified of an LP. He says that until I do the LP, it's probable MS, but could also just be migraines (???? what about the other symptoms????).  I don't want to have MS, but I'm just thinking it's too obvious, and I just want a diagnosis. I've got an appointment with another neuro at the end of the month for a second opinion, but in the meantime, I'm going nuts!! Has anyone here received a diagnosis of MS w/o an LP or lesions in the spine?  Thanks so much!

[Roxie0818]

HUGSSSSSSSSSSSSSSSss to you !
Take care of yourself!
Roxanne

[T-lynn]

You have every right to be frightened and concerned about MS.

This disease is an individual disease and it effects all of us differently.

As Chris stated the disease modifying meds help today.My grandmother had MS,she was in a nursing care facility for years.That was way before the meds we have today.

I had lumber lesions and optical neuritis back in 1998,didn't have another symptom until the end of 2004.

This disease is a disease of mystery,you can have a whole host of symptoms,they may linger then they leave as fast as they come.Some may have some residual permanant damage.

I know many people with MS and not wheel chair bound.I wear leg braces and use a cane for long distant walking.But I do not let it get me down.

Hang in here with us,let us know what your neuro says.Remember your not alone.

Oh,the LP isn't bad at all.

[Momzilla]

My name is Chris, and I want to welcome you to the forum as well.  Most people around here call me Momzilla, or Zilla.  

I know you're nervous.  You're symptoms sound very frightening.  Anyone with the symptoms you have would be nervous, especially if they had a relative who was crippled by a disease they are afraid they may now have.  And I'm going to guess that you are fairly convinced you have MS now, aren't you?

It's all right to be nervous, Mrs. Mais, but I want to let you know that there are SO many more disease modifying drugs out right now  than there used to be even a decade ago.  If they have caught your disease (assuming you have MS, of course) early, they can slow the progression.  Just a very, very small percentage of MS patients need wheelchairs.  It's true that many do need aids to walk, but not necessarily all the time.  Some patients do not need them at all.

It's OK to worry.  We'll worry along with you.  But know that there are a lot of great treatments available now, abd more research being done all the time.  OK?

When Quix is feeling better, she will put your mind at ease.  If Jon checks in, he knows a lot, too.  Until then, hang in there!  Feel well!

Zilla*

[MrsMais]

P.S.  I'm also very nervous because I have a cousin who is cripple from MS, I know they say it's not heritary but there may be a connection.

[MrsMais]

Thanks Carol  I appreciate the prayers, and I will pray for Quix.

[grannyhotwheels]

I'm not Quix but she has'nt been feeling well and I'm sure she will jump in when she can.  Please remember to pray for her.

To me, but I'm no doc., you sound like MS all the way.  Also, I have had 2 LP and neither one of them caused me any problems.  I did'nt feel the pain when they went in either.  The numbing shot is all I really felt.  I'm sure some people have had bad experiences but mine was ok.

I will be praying for you on Friday when you see your neuro.  Also, optic neuritis is a classic symptom of MS.

I'll be praying and best of luck,
Carol