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Old 02-15-2010, 12:21 PM   #1
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New here.... sort of.

About 11 years ago I had some room spinning dizzy spells. I also had numbness in my leg and arms. My bladder had trouble working and had to even get a cathader. My balance was way off. All this happened over the course of a year. I had a brain MRI and as far as I recall, it didn't show anything. I had a LP that showed something weird, but not anything you'd normally see. I didn't do so well on my neuro exam and so was eventually sent to an MS specialist in Indianapolis.

Long story short, he said that since my MRI didn't have changes in between the 6 mos or so that I had the 2 MRI's that I didn't have a definate dx, but he'd call it probable and that I was probably in the very early stages of MS, but he coudln't say for sure anything except that neuro exam had worsened over time. I was to see him every 6 mos or so.

We ended up moving and I felt better except for about 2 times when symptoms came back for a few weeks. It was nothing super unbearable and since nothing ever showed up on my MRI, I figured I was done with worrying about MS and so I didn't even see a dr. for any of it.

Fast forward to about 6 weeks ago. My right arm and then eventually right leg went kinda numb(heavy feeling). I started having trouble holding my pencil and my touch sensation was decreased. I figured it was some herniated discs in my neck, so I scheduled an appt. with a neurosurgeon after my 3x a week chiropractor appts did nothing to help the arm/leg weakness. NS ordered MRI on C-spine. NS said that while I did have a herniated disc, it was not pressing on spinal cord and was not the cause of my symptoms. Oh, btw, he also noticed increased jumpiness of my reflexes and said they were very abnormal. Once he saw my MRI he said he needed to refer me to a neurologist. At this point I said nothing to him about the MS specialist I saw years earlier because I figured that didn't turn out to be anything then, so why bring it up?

Saw neurologist who right away asked if I knew what he was thinking. So then I had to admit at this point that even though I had put it completely out of my mind all these years that yes, I knew where he was going with this, even though it didn't occur to me even at the NS office.

So he ordered an MRI with contrast. I'm having that done tomorrow. He did a nerve conduction test and I guess it was normal. The dr. is normally 2 hours away in another city and my appt. this Friday was just cancelled, so I won't see him until March 5th. I will most likely get my MRI report by the end of the week. I will have the disc to look at tomorrow.

My questions are: Since I had this type of stuff go on 10 years ago and nothing showed up, chances are it will be nothing again, right? Has anyone ever gone this long between episodes and then eventually ended up getting a dx after the first MRI was clear? Wouldn't leasons show up the first time if I had the symptoms then?
If the nerve conduction test is normal does that mean that the chances of my MRI being clear are good?

If my MRI is not normal, will the dr. call do you think or just wait until March 5th to tell me?

I've tried not to think about this and part of me wonders if things will show up this time around since I had a probable dx before, but then most of me tells myself that the MRI will be normal and again, I'll never know what is causing the symptoms.

Any info/advice would be helpful. Thank you.
__________________
Brostrom x2, peroneal tendon repair x2, Peroneal subluxation, PTT tendon repair, microfracture x5, OATS, Distraction arthroplasty, ORIF talus & fibula, subtalar fusion, ankle replacement (failed)
RSD

 
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Old 02-15-2010, 04:16 PM   #2
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Re: New here.... sort of.

hi there and welcome to our boards.....first thing I want to tell you is please do not try to read your scans or reports. It takes over 8 years to go to school to learn how to read them, and unless you are a radiologist, or doctor- you shouldnt be trying to read them.....

now, as for what you asked:
My questions are: Since I had this type of stuff go on 10 years ago and nothing showed up, chances are it will be nothing again, right? Has anyone ever gone this long between episodes and then eventually ended up getting a dx after the first MRI was clear? Wouldn't leasons show up the first time if I had the symptoms then?
If the nerve conduction test is normal does that mean that the chances of my MRI being clear are good?


It can take ten years for things to show up on a MRI....since you didnt have any MRIs in the past few years, anything is possible on your next scan. People with MS can go for many, many years with no episodes, or they can have continuous ones..each case of MS is different. And, yes, its not uncommmon for people to have clear MRIs for a few years and then eventually get a MS dx....lesions can take a very long time to show up. As for the nerve conduction tests, they have nothing to do with MS usually. And, they have absolutely nothing to do with your MRI. They are given to find out how the nerve reacts...they can rule out other things, like Carpal tunnel or Muscular Problems...

Try not to be afraid. MS is manageable. The symtoms you are presenting DO sound neurological in nature, but they dont have to be MS...and if they are, youll deal with it. Its not going to change you! The biggest thing to remember is if you do have MS its obviously very slow in its progression! Most of us do not go ten years without symtoms. But, its also important, that if you do wind up with lesions, to be accepting of knowing what is causing the symtoms....you can prevent further progression, if you take care of yourself and start on one of the MS disease modifying drugs. There is no cure, but there is documented success in treating progression. Make sure they order your MRIs with and without contrast...small lesions might not show up without the contrast. Also, request at the very least that they do both your brain and Cspine...lesions can also hide in your Tspine, although its not as common.

let us know how it goes...
Nikki
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RRMS- dx 05

 
Old 02-15-2010, 05:24 PM   #3
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Re: New here.... sort of.

Hi Nikki,

I am getting the MRI with and without contrast. The dr. told me that if it is MS, then it is a mild case and the drugs out there are good. I'm not worried, really. I've already been through the initial shock 10 yrs ago when this was all first going on. At one point the MS specialist even checked MS on my sheet that you bring to checkout. So, I went through a period of this is probably what I have and then as time went by and I was good, I told myself that it isn't it.

I just want to know at this point. It was so frustrating being in limbo back then and it took me awhile to block it out and not think about it, but I did and went on to get my 2nd degree in Tae Kwon Do and even become an instructor. I won't let this or anything change who I am. I just hate waiting until March 5th to hear what the MRI has to say. I'm so over this limbo. My arm and leg have since gotten better and only some residule loss of sensation in my hand is left.

I'll let you know how it goes. I'm not sure if my dr. will call if something shows up on the MRI and so if I hear nothing it is negative. I can't imagine them telling me over the phone if it is MS. And if there are leasons, would they have to do more testing?
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Brostrom x2, peroneal tendon repair x2, Peroneal subluxation, PTT tendon repair, microfracture x5, OATS, Distraction arthroplasty, ORIF talus & fibula, subtalar fusion, ankle replacement (failed)
RSD

 
Old 02-15-2010, 05:34 PM   #4
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Re: New here.... sort of.

Kris, look into the McDonald criteria. You can research it....thats what docs have to use before they can give a dx of MS. There really isnt any such thing as a mild case of MS. There are 4 stages of MS, and 85% of us have relapsing/remitting....the next stages are progressive, with differnt levels of progression. You dont have to worry about having one of those, because those types do NOT include periods of remission, which you have obviously had! So, no worries there.

The drugs which are available, are all shots (injections) which we give ourselves. They arent the most fun to get used to, but within a few months are no big deal...and not all of the drugs are every day shots. Mine is 3 x a week.

You do have the symtoms, however unless you have the lesions, you arent going to get a dx...so thats why the MRi is so important. Youll see more if you read the McDonald criteria. It was updated recently, so make sure you are reading the "updated" version.

March 5th isnt so far away. Trust me, Ive been waiting for March 13th for almost a year! I go on vacation and cannot wait!! But its possible that your doc will call you if there is anything you really need to know; however, its been "this long" and another few days/ weeks isnt going to make a differerence. Youre in good physical shape, stay that way! Continue to exercise and eat right...certain supplements might be beneficial for you, especially fish oils and omegas...they support brain health. Stay away from all immune system boosters, especially Echineacea- it wont help you and it can hurt you. Stay away from anything "fad" and keep away from "miracle' cures...there arent any...but taking care of yourself is key!

Please do let us know what you find out...and stay strong. This is manageable, ok??
Nikki
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RRMS- dx 05

 
Old 02-18-2010, 08:04 AM   #5
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Re: New here.... sort of.

Got my MRI report although I don't see the neurologist until March.
The report says both my MRA and my MRI are both normal. I kinda figured that it would since it was normal last time around in 2000. So I guess that's it and I'll never know what caused my right side to malfunction this time. It's almost back to normal, except for the feeling in my hand. If I touch my leg it feels like someone else is touching my leg. I really would like to know why that's going on. I guess some things are never figured out.

So I'm happy the brain mri is neg, but frustrated that I don't have answers still after 10 years.
__________________
Brostrom x2, peroneal tendon repair x2, Peroneal subluxation, PTT tendon repair, microfracture x5, OATS, Distraction arthroplasty, ORIF talus & fibula, subtalar fusion, ankle replacement (failed)
RSD

 
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