Most likely it is.....

[zerodegrees]

Hello All,
I posted for the first time about two weeks ago and received some great info. Thanks so much for that.

Quick back story:  I am a 45 year old female. About a month ago, my friend made me go to the ER because of left sided numbness. She was sure I was having a stroke!  A stroke was ruled out after a brain MRI; however several white spots found on MRI, so I had a visit from a neurologist at the ER and I have been undergoing a lot of tests since.

I am back with more news.

My first visit in the clinic with the neuro he said, "I really don't think you have MS."

Three weeks later he said, "It looks like you most likely have MS, but I can't be 100% sure."

In a nutshell...a spot was found on my cervical spine and my thoracic spine. He said he would not have been so worried about the spots on my brain if they had not discovered them also in my spine.

All other possibilities had been ruled out, so he said this is the most likely cause.  Next step is a lumbar puncture under fluoroscopy.

He said if the test is positive that I would start treatment.

He said if the test is negative, it could still mean MS, so my options would be:
1) begin treatment
2) wait 6 months and repeat MRI to look for changes.

My questions to you are:
1)Will my insurance cover treatment without an official diagnosis of MS? My diagnosis on the chart is "demyelinating disease" perhaps that is good enough.
2) Is "probably MS" also a diagnosis?
3) I am terrified of having the LP done. I purposely had natural birth x 3 because I did not want a needle in my spine for an epidural. Please someone tell me this is not as bad as I think it will be.


Thanks!

[Guitar_grrrl]

Yeah, what JJ said.  I'm curious, too, why your neuro is wanting a LP.  With your history, symptoms, and MRIs, surely he could come up with a diagnosis.  Hang in there!  BTW, the LP itself doesn't hurt, and only a few folks get the dreaded post-LP-headache (I was one of 'em), easily remedied with a blood patch.

[supermum_ms]

"My main issues are balance, hand tremor, and pins/needles. I'm guessing this is cerebellum then?"

Honestly, those issues wouldn't make me specifically think of cerebellum "The tremor is often most prominent when the affected person is active or is maintaining a particular posture.  Cerebellar tremor may be accompanied by dysarthria (speech problems), nystagmus (rapid involuntary movements of the eyes), gait problems, and postural tremor of the trunk and neck."  
http://www.ninds.nih.gov/disorders/tremor/detail_tremor.htm

It's not necessarily easy to work it out, when you have both brain and spinal cord lesions. Spinal cord lesions can cause permanent damage and could account for the pins & needles, numbness in your lower half and your balance issues that have continued. The Brain stem is basically between the cerebellum and spinal cord, a common lesion location which can basically interrupt nerve signals between the two, even without spinal cord or cerebellum lesions/damage.  

I would say that because of your ER sx's, that you would still fit relapsing and remitting MS, even with sx's from prior remaining because the progressive types, generally cause sx's to slowly worsen over years and years. If you actually have any evidence of when that happened, it should be enough to recognised you as having the 2 attacks needed to dx, though i actually would of thought just going with your brain and spinal cord MRI's would of been enough.

Anyhooo don't get bogged down trying to figure out what lesion matches which sx, because it will drive you mental and it isn't really black and white, or simple.

Cheers..........JJ    

[zerodegrees]

Thank you so much Rendean for that link.

That is very helpful information. I have been hearing about the health pages but could never find the link, and here they were right under my nose the entire time.

I am feeling encouraged that I can get some of my balance back or maybe keep it from getting worse.

[rendean]

Hi and welcome,

Thought I'd add my two cents to the conversation. YES, you can regain your balance! Due to the brain's neuroplasticity you can re-train your brain and regain your balance. I have been through PT 4 times and each time I regained my balance!! I went from a walker to a cane to not needing anything just a cane for surface that may be slippery due to decreased proprioception and numbness in my left foot after 40+ years of mild symptoms.

Here is a link from our Health Pages located at the very bottom of this first page . they contain a wealth of information on a variety of subjects. This link is about neuroplasticity:

http://www.medhelp.org/health_pages/Multiple-Sclerosis/Neuroplasticity-and-MS/show/424?cid=36

Hope this information helps!!

Best to you,
Ren

[zerodegrees]

Supermum,
Thank you for the link.

I picked up a copy of my MRI reports (not that they make much sense to me), but like the doctors already told me, my brain is loaded up with these spots. There is only one in the C spine and one in the T spine.

My main issues are balance, hand tremor, and pins/needles. I'm guessing this is cerebellum then? The thing is I don't have these "relapses" I keep reading about. The tremor and balance issue started about a year and a half ago. I've been ignoring it but the problem has been there daily since it started, never easing up, but slowly becoming worse. I also notice it is worse when I am tired. I've had pins/needles/numbness in my lower extremeties for several years but always attributed that to an old lower back injury.

My "new" symptom, which led me to the ER was the pins/needles/numbness in my left arm and left side of face. This has not let up and it's been 4 weeks now. That doesn't seem like a big enough issue to be a relapse, and I would not have sought medical attention if my friend had not urged me to go. Or have I been in a relapse for 1 1/2 years???

So I wonder if I will be stuck with this new tingling forever. I sometimes wonder if they are  barking up the right tree, considering it is not doing what it should.  I have a lot of questions for my Dr. at my next appt.

[supermum_ms]

Hey that's great that you really like your neuro!

1) Is it possible to improve your balance? Or at least keep what balance you have?

A) I strongly believe in brain plasticity, 20+ history working with disabled children, so from my personal experiences I do believe that yes, you can 'improve' things like balance along with many other issues but it isn't infinite and it's not always possible to 'keep' the function you have, because of too many varying factors to go into.

I'm also still thinking like the athlete I use to be, as well as being a bit of an adrenaline junkie err despite my chronological age lol.  I'm honestly not sure if I could ever, not find some way to improve things, and not always inside the box. I'll always keep working on getting individual functions back, falling back on what I know and understanding about brain plasticity and MS, helps to keep me believing that I will get as much as possible back, when i loose it again.

I am also a realist, so i'm not aiming for normal normal, just as good as it can get.........my new normal. I walk lines, wobble and balance boards, yoga, and you'll often find me at the kitchen table balancing on one leg lol though not whilst eating dinner ;D both my kitchen bench and table happen to be perfect for me and i use the height and stability whilst exercising and stretching too. I'm an ex-gymnast, and all the sports i've been into since, have required better than average balance, oh did it stand out when I lost it.            

2) Where is the damage at that has affected my balance? He said the lesions in my spine were "old." I don't know about the brain lesions as that was done w/o contrast.

A)My big bang of 09 toasted my balance for the first time, another first back then was speech issues, but its the combination of tremor, balance/gate, speech and vision that indicate the signs of cerebellum damage for me. I also experience different balance issues because of vertigo, and i think you might be describing vertigo. Have a look at this http://vestibular.org/node/2 which is all about dizziness,vertigo and equilibrium disorders, to see if something makes sense to what your experiencing.  

Cheers.............JJ

[zerodegrees]

You all are so great!  Thank you so much for your responses.

I did research the LP procedure under fluoroscopy and found that it should decrease the risk of complications as one of you mentioned.  

I really do like my neuro. He is a very kind man and has been very thorough. That is a true blessing after some of the stories I've read here.

Another question (and I didn't think to ask the Dr. because at the time I was trying to absorb everything he was telling me): My biggest issue right now is my balance. I first noticed it was an issue last fall and it has been getting worse.

1) Is it possible to improve your balance? Or at least keep what balance you have?

2) Where is the damage at that has affected my balance? He said the lesions in my spine were "old." I don't know about the brain lesions as that was done w/o contrast.

I am not dizzy, but I have that feeling like I've just stepped off a treadmill or that I've had a couple glasses of wine.  I do not like this feeling.

Thanks!

[kwarendorf]

Hi ZD -

It sounds like your neuro is doing a really good job. He is offering you treatment while you wait for the LP. He is also not ruling MS out even if the LP is negative.

The LP itself isn't always a big deal. I've had 4 and never had any ill effects :-)


Keep us posted,
Kyle

[supermum_ms]

I'm so glad you came back with an update! I have been wondering if you took the step towards finding out, glad you found your courage :D even though this news probably isn't the news you were hoping for.

I'd say your Neuro highly suspects MS because of you having both brain and spinal cord lesions but he's only counting the sx's that started all this testing, as 1 attack. For you to meet the Mcdonald criteria, you need evidence of 2 or more attacks, so he still wants more evidence of MS and if the LP shows 2+ Obands he would dx you with MS.

If he only gave you those 2 options, I believe he's still saying even with out a positive LP, he thinks MS is going to be your dx and you could start treatment now or wait until your MRI changes and you definitely meet the Mcdonald criteria.  

your questions answered as best I can (i'm in Australia)

1) Demyelinating disease includes MS but not specifying which type, so yes it is a dx and i'd expect your insurance should cover treatment.
2) Probable MS is often used when waiting for more evidence of MS, i suppose its one step away from the official clinically defined dx of MS (CDMS). Not sure if its actually a dx though....
3) The LP is not as bad as people worry about! there are tips on what to do before and after the LP and I'll locate it for you, cause its helped many people destress about it.  

Hope that helped and if you have any questions please feel free to ask!
  
Hugs..........JJ
PS, I do apologise for your post being up for hours before responding, i've not had the time to get online like i normally do, so i'm sorry about that!

[immisceo]

LPs done with fluoroscopy really help cut down on any of the common complications with the procedure, so I wouldn't worry too much about that.

As for the rest, I'd just communicate directly with your insurance provider. I could imagine different ones have different thresholds.

Don't get panicked if they want to wait until there's an iron-clad diagnosis. 6 months isn't a long time in the grand MS scheme of things. I know it doesn't feel like it, but if you had to wait for a short length of time it won't really harm you. A relapse can hit out of nowhere, but the disease itself is actually pretty slow moving.