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Old 04-22-2012, 08:25 PM   #1
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Question Normal MRI what next ? please share DX stories

I opened the mail today and my results were in there. READ MRI of brain and cervical spine normal . So what now ? im wondering why they did cervical spine and not lumbar because thats why there pain mainlyt is when i have back pain. After reading some more research ive discoverd that about 65% of people with MS have had normal MRIS at one point during their DX. Please give me some advice and share your stories, What to do next ? Neuro said she was going to do some nerve test ? should i ask for something else ?

 
Old 04-22-2012, 08:31 PM   #2
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Re: Normal MRI what next ? please share DX stories

Early on you might appear "normal". It just takes a single lesion to cause problems and it can be easily missed due to the actual size of the lesion. I would continue with your tests. The results of further testing can provide information which can isolate a problem. You might ask for an MRI of your thoracic and Lumbar spine. Was your initial MRI with and without contrast?
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Old 04-23-2012, 06:13 AM   #3
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Re: Normal MRI what next ? please share DX stories

My First Major flair up was vertigo Took all of January and 1/2 of Febuary to get DX. I was sent to an E N T he tought it was a toumer in the inner ear he ordered a MRI looking for a toumer. When the results came back he said I need to see a NERO. He could not tell me what it was only a NERO. could tell me he thought it was either MS or nuropthy. I seen the NERO and he told me it was MS. I did not know what MS was all I knew was I put money in the cup at the bank for the MS walk. I was not scared because I did not know the severity of that DX. I asked when can I go back to work he said probably never. That scared me then ( what am I supposed to do now, How am I supposed to provide for my Family) It really didn't take that long in comparison.It is the not knowing that is hard. when we learn what is wrong then we know what course of acion we can take if any. My Grand Mother always said nothing lasts for ever and I lived by that. Didn't go to the doctor a nap will cure me WRONG. Some things do last forever. It is how we deal with what the DX is that really matters. I had 2 choises feel sorry for myself (I did for a while) or learn to live with it (what I learned to do). I have spent months in a bed and couldn't get up then I spent months in a wheel chair. Afer that I used a cain now nothing. Meds were part of the problem. MS mimmicks many things it is a long process to get to the DX. It is hard when we don't know what the problem is You will find out what is wrong and I hope you don't hear those words you have MS. Good luck and God bless
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Old 04-23-2012, 01:39 PM   #4
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Re: Normal MRI what next ? please share DX stories

Hi. I kind of wish you hadnt read that story before you got some additional information. Over 400,000 people alone in the US have MS. Only 5% of them are disabled.....the chances of winding up disabled are extremely low. As this poster pointed out, one can have MS and have a horrible time getting it controlled, but over the course of weeks or months, recover . He went from bed bound to now "nothing" as he says. Meaning, he is walking. Who knows? he may even return to work at some point.....

I have over 60 lesions on my brain. I work full time, go to post graduate school full time and have 3 kids and a husband and a home. I travel, ride horses and manage to live a very normal life. I DO have really bad weeks....and I have been known to crash from all I do- a healthy person would have a hard time with my schedule! But MS doesnt have to be life changing, thats my point.

Why were you sent for the MRi? What was your symtom which sent you there? You asked about people's stories, I think, if you look here on healthboards you will read thousands of onset symtoms . Look that up on the search onset symtom and MS - youll find the stories.

You can ask to have lower MRis done, but i suggest you read up on the Mcdonad criteria for MS. The revised critera....thats what a doctor looks for in order to dx MS...

hope you feel better...Nikki
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Old 04-23-2012, 03:05 PM   #5
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Re: Normal MRI what next ? please share DX stories

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Originally Posted by MSNik View Post
Hi. I kind of wish you hadnt read that story before you got some additional information. Over 400,000 people alone in the US have MS. Only 5% of them are disabled.....the chances of winding up disabled are extremely low. As this poster pointed out, one can have MS and have a horrible time getting it controlled, but over the course of weeks or months, recover . He went from bed bound to now "nothing" as he says. Meaning, he is walking. Who knows? he may even return to work at some point.....

I have over 60 lesions on my brain. I work full time, go to post graduate school full time and have 3 kids and a husband and a home. I travel, ride horses and manage to live a very normal life. I DO have really bad weeks....and I have been known to crash from all I do- a healthy person would have a hard time with my schedule! But MS doesnt have to be life changing, thats my point.

Why were you sent for the MRi? What was your symtom which sent you there? You asked about people's stories, I think, if you look here on healthboards you will read thousands of onset symtoms . Look that up on the search onset symtom and MS - youll find the stories.

You can ask to have lower MRis done, but i suggest you read up on the Mcdonad criteria for MS. The revised critera....thats what a doctor looks for in order to dx MS...

hope you feel better...Nikki
she is correct nothing does mean I am walking without assitance. I do work from time to time (odd jobs not a real job),dut work is work. MS is very diffrent from one person to another so is the dx some takes longer than others. If it turns out to be MS rember it is not a death sentance nor does it mean wheelchair it means you know what is going on with you and what you should do. Please don't stress too bad stress will make you feel worce no matter what the problem is.
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Old 04-23-2012, 03:48 PM   #6
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Re: Normal MRI what next ? please share DX stories

Uncle Sam,
Im glad you are doing better. I remember talking with you on here when you were going through the worst of it....its good to know things arent all bad and you are doing better!

Your example is a great example of how people deal with this disease and how it affects each person differently....and also how once you learn to deal with it, it doesnt always mean the end of anything. I love the way you sign off.....its absolutely true!
Nikki
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Old 04-23-2012, 04:58 PM   #7
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Re: Normal MRI what next ? please share DX stories

This may not be helpful since I haven't been diagnosed and very well may not have MS at all, but I did have a clearn MRI 2.5 years ago (during my 3rd attack of whatever-this-is).

As far as the "what next?" I followed up on any lead I felt I had. I had my hormones checked several times, I had more bloodwork, I saw an accupuncturist and a chiropractor (someone on here recently told me chiros can be bad for people with MS, so don't take it as advice, just that it IS what I did at the time, doing the best I knew how to do). I had a laparoscopic surgery to try to determine causes for my pain... My PA just agreed to submit a request to my insurance to get me approved for another MRI, so maybe I'll get one in a few weeks. I'm scared it will show lesions and I'm also scared it won't, as NOT having a diagnosis may be scarier than just knowing for sure what it is.

Not having a diagnosis feels awful and it's easy to feel you don't have a clue on how to even treat the symptoms because youhave no idea what's causing it. I guess the best advice I can give regarding that is to just hang in there, and follow your intuition. If you really feel it is MS and your doctors are with you, get scheduled for another MRI on whatever schedule they recommend. If you aren't so sure, follow up on other things it might be and get all the testing done that you can. And, take care of yourself. *hugs*

 
Old 04-24-2012, 08:34 PM   #8
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Re: Normal MRI what next ? please share DX stories

It was with and without contrast and i dont even know who looked at them or anything like that for all i know radiology just called her and said it was normal. frustarting when you feel horrible and seems as if none is listening at all . Most days just feel as if im to my breaking point!

 
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Old 04-24-2012, 08:42 PM   #9
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Question Re: Normal MRI what next ? please share DX stories

NIKKI- there are many symptoms that finally led me to an MRI. have had chronic pain for 6 years with weird on and off symptoms, the last two yeasr have been the worst, hip/thigh pain so severe that sometimes when i wake up and had been sleeping to long on my side my hip is like contracyted almost in a fixed position that it takes hours for it ti relax that muscle , low back pain, incontinence, tingiling feet and hands, my legs hurt all day long constantly feel sore, and im tired all the time and feel like i have little to no energy, i have heat and co,d sensitivity cant get my body temp under control ! theres so many things could go on forever lol, im just frustrtaed they have ruled out a bunch of disortders ive had vitamin levels checked wheat allergies, glucose allergy, hormones checked, every kind of rheumatological disorder ruled out lupus and lyme, Fibro doesnt fit becasue i dont have enough pressure points or trigger points that most with fibro have, its very frustrating knowing in your heart you dont feel normal but everything says you are, then people start to wonder if your crazy or something, so i guess my question earlier was just asking anhyone if they have ever had a clean MRI and then later dx with MS?

 
Old 04-24-2012, 08:46 PM   #10
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Re: Normal MRI what next ? please share DX stories

Quote:
Originally Posted by field1234 View Post
It was with and without contrast and i dont even know who looked at them or anything like that for all i know radiology just called her and said it was normal. frustarting when you feel horrible and seems as if none is listening at all . Most days just feel as if im to my breaking point!
I understand your frustration. Not knowing causes stress and only worsens the situation. Yes, I think many of us felt like we were at our breaking point. I still feel that way when the pain pushes past my threshold. Please feel free to vent here when you need to. You will get through this and there are better days ahead. I know, I have been where you are and I know how far I have come. I know that you can go far.
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Old 04-25-2012, 05:29 AM   #11
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Re: Normal MRI what next ? please share DX stories

I find myself in a similar boat with no DX. My MRI wasn't normal, but the lesions I have are not MS typical in nature and more indicative of ischemic change or something like that. I have gone from, "I need a dx" to "look at everything I don't have" and that is ok with me. I know I didn't have a stroke, my heart is ok, I have no aneurysms, tumors (well, except for the spot they found on my eye which will be followed up on today), MS or blood issues. In my heart, I feel like it is "something", but as a neuro told me years ago, "We only really understand about 10% of the brain". So, while I am having symptoms, still have my numb arm etc. I am ok now with not knowing what all these symptoms are from. I am treating the symptoms and if something gets worse, I will follow up. My neuro is re-checking me in 2 months and a follow up MRI in 6. It may or may not show change and unless something crazy happens, I am just going forward with living rather than worrying endlessly about what it "might" be.

It's easy to get caught up on all this when you don't feel that great. But I focus on the good days and hopefully they will be more in number. Fatigue is my big issue right now, so I am trying to get more sleep etc.

Hang in there. I hope you get some answers.

 
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