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Old 02-01-2013, 04:33 PM   #1
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Doctor says concern for possible ms

Hello Everyone, First time ever doing this so please bear with me. About 2 years ago I went to the dr for a headache that lasted 3-4 months and blurry vision, eye pain behind left eye and then it moved down into my left jaw. I also had trouble finding right words to say and would mix my words up. Also had trouble remembering how to spell words and I am an excellent speller. Dr suggested a neuro appt but I was unable to go. Symptoms went away until the day before christmas. I woke up from a nap and my vision was so blurry that I couldnt see details. I went to the dr the day after christmas with trouble walking, losing my balance, speech problems and my right thumb would twitch. He said possible ms should i be worried? Had a mri that came back unremarkable, went to neuro in pittsburgh he said he didnt see anything abnormal but then ordered 2 mri's while i was in his office. He told me he didnt see anything but if i kept having symptoms he would be more than happy to see me back in a couple of months. Pcp just sent me to ENT specialist she said so far so good but wants to run more tests because of the dizziness. She asked about a neuro and I told her what he told me. She told me I should get a second opinion from a ms specialist. So, I guess what I am asking is how concerned should i be about possible ms.
Thanks for reading and responding I appreciate it.

 
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Old 02-01-2013, 05:00 PM   #2
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Re: Doctor says concern for possible ms

Welcome.

"She asked about a neuro and I told her what he told me. She told me I should get a second opinion from a ms specialist." This was the best advice you have had so far from what you have written. I would also encourage you to see an MS Specialist. Your MRI might have indicators which have been overlooked. You have had optic neuritis (ON) twice and there is probably evidence which is visible.

Ask for a referral to an MS Specialist. Again, Welcome!
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Old 02-01-2013, 05:28 PM   #3
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Re: Doctor says concern for possible ms

Hi. Welcome to healthboards. If you are asking "Should you be worried" as in, is this life or death? No, of course not...however, if you DO have MS, its a progressive disease- and one you want to get a handle on before something happens which isnt reversible. MS isnt curable, however you can live with it and have a perfectly normal life....there are meds for the symptoms, and meds to (hopefully) keep it from progressing.

You DO need to see a MS specialist- a regular Neuro isnt qualified to dx MS in most cases. There are exceptions, but a MS specialist has alot more training and the ability to pick up things which a normal Neurologist (especially one who deals with all kinds of neurological defects) will not see....a MS specialist has seen it all and heard it all...MS is a very individual disease and its different for almost every patient.

Try to remain calm and take this one day at a time...its certainly not going to change your life any more than it already has- how you went thru months of headaches like you did, shows that you are very strong......if you find out you have MS, at least it will give you some clarification on why. Its quite possible that you are having terrible migranes ....this will be decided with additional testing.

I hope you feel better soon.
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Old 02-01-2013, 05:30 PM   #4
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Re: Doctor says concern for possible ms

Hi,
I'm sorry you are going through this. As scary as all these symptoms can be, the not knowing is scarier. You need to think, whatever it is, it's probably been there awhile (in you). The MRI's that you had, were they done both with & without contrast? This matters in MS lesion detection. However, lesions alone don't diagnose you. It's more of a "you don't have anything else" kinda thing. It is usually (or can be) a drawn out process of getting diagnosed. You do need to see about getting in to see an MS specialist. Where I live, I couldn't get an appt. with a MS specialist until we were all pretty sure that's what it was. I had 3 mri's & a spinal tap, all signs pointed to yes, then I got an appt. with "the man". I'm not sure if it's that way everywhere, from what I've read, sounds like just me. Now as far as how worried should you be...while MS is a disease that we all hear horrid things about, it's not all as bad as what you hear (at least not all time). The issues you described do sound like MS symptoms, but my doctor told me (before I was dx) that a lot of stuff can cause all the symptoms that look like MS. There are a lot of treatments for MS & a lot of knowledge about things that can help. I recommend a book by Marlo Donato Parmelee, It's called "Awkward B****h". I read this book while I was not yet dx, but knew where it was going, it really helped. Good luck w/ everything & know this board is here. I was just dx in August, this board has helped me a ton.

 
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Old 02-01-2013, 05:36 PM   #5
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Re: Doctor says concern for possible ms

To clarify what was said above alittle bit further...in order to get a MS diagnosis, one has to meet certain criteria. This is known as the revised McDonald criteria.
Lesions - are the first step in the criteria; however if the MRI is without contrast, they will still show up, they just wont "glow". Glowing lesions mean active lesions- which usually are the cause of new symptoms or a relapse...once the relapse or new symtoms settle down, the lesions will still apppear, even without contrast, however they will be white shapes on the MRI, as opposed to glowing or enhanced.

The spinal tap is not part of the McDonald criteria;however it is often used to rule out other things which present like MS.....EEGs, EKGs, VEPs and VFTs are all different tests which can be used to show additional information, but are also not part of the McDonald criteria. Each test helps to rule out other things...
And, diagnosing MS isnt easy- for some of us, like myself, I had a dx in less than 48 hours. The symptoms, the MRI all confirmed it, the EEG, VEP, VFT, and Spinal Tap all simply ruled out any doubt... I knew before those test results came back that I was looking at Multiple Sclerosis...

Its a very livable disease. I have 3 kids, finished 3 degrees and am writing my dissertation, all while working in sales, traveling across several states and working 50+ hours a week...I run a household, volunteer, and manage to have time for me....having MS isnt the problem- its not having enough time in the day!

Hang tight..answers are there, but you have to have the correct tests to find them.
Nikki
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Old 02-02-2013, 04:51 AM   #6
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Re: Doctor says concern for possible ms

Thank you all for your kind words, information and support. Just to clarify a little more I had my first mri done with and without contrast and it said I had several tiny foci in the white matter. My other two mri's were without contrast. Pcp took alot of blood and ran tests and those came back "relativly normal". I would like to ask one more question if i may, is ON exclusive to ms or are there other reasons for ON? I know im not alone but it feels that way at home because I dont want to bother or freak out my kids and my 2nd oldest just had my first granddaughter 4 months ago and I dont think its fair to burden her with everything she has going on so what I am trying to say is you guys are sincerely appreciated more than words can actually say especially from someone like me who really doesnt have anyone to talk to about this.
I hope i am doing this texting and reply thing right lol

 
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Old 02-02-2013, 05:22 AM   #7
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Re: Doctor says concern for possible ms

Hi. You are doing fine!
You asked "is ON exclusive to ms or are there other reasons for ON? "

ON or Optical Neuritis can be either a sign of MS (many a patient has been diagnosed by their opthamologist, or their opthamologist was smart enough to refer them to a Neurologist when they discovered the Optical Neuritis OR it can be a stand alone disease...

Optical Neuritis is diagnosed as inflammation of the optic nerve, the nerve behind the eye, which we cannot see without the right equiptment. An eye doctor who dialates your eye, can see this without a problem. When the nerve is inflammaed, its quite obvious....and once it heals, it can remain slightly white in color, thinner, or have scars on them which can remain seen for years...so even when a patient says "this happened months ago", there is usually still evidence of it present.

Inflammation of the optic nerve can be a stand alone problem. I have a 40 year old brother who suffers from this yearly. Because I have MS, he sees my neurologist once a year and gets MRIs yearly, to keep an eye on whether or not he is getting MS as well...its been 6 years now, and he has never shown a single other symptom other than yearly, losing color vision in one eye and also seeing floaters, and having pain behind the eye. He is so used to it now that he knows what is happening when it happens.

In the old days, they treated this with oral steroids...this isnt protocol now. NOW- IV steroids, known as IV Solumedrol, are used , usually for 3-5 days. Its 1000 mgs of the stuff, adminstered daily thru a vein, which almost instantly relieves the pain and brings the vision back to normal. Its also not unusual for a doctor to NOT DO ANYTHING. If its been going on for more than a week, it may be too late to use the steriods....and if it happens repeatedly, steroids have their own side effects which many doctors feel arent worth the risk, and therefore, they do nothing. ON will heal on its own, however it can take more time and occasionally come back weeks later.

I hope this helps!
Nikki
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Old 02-02-2013, 05:25 AM   #8
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Re: Doctor says concern for possible ms

Quote:
Originally Posted by MSNik View Post
To clarify what was said above alittle bit further...in order to get a MS diagnosis, one has to meet certain criteria. This is known as the revised McDonald criteria.
Lesions - are the first step in the criteria; however if the MRI is without contrast, they will still show up, they just wont "glow". Glowing lesions mean active lesions- which usually are the cause of new symptoms or a relapse...once the relapse or new symtoms settle down, the lesions will still apppear, even without contrast, however they will be white shapes on the MRI, as opposed to glowing or enhanced.

The spinal tap is not part of the McDonald criteria;however it is often used to rule out other things which present like MS.....EEGs, EKGs, VEPs and VFTs are all different tests which can be used to show additional information, but are also not part of the McDonald criteria. Each test helps to rule out other things...
And, diagnosing MS isnt easy- for some of us, like myself, I had a dx in less than 48 hours. The symptoms, the MRI all confirmed it, the EEG, VEP, VFT, and Spinal Tap all simply ruled out any doubt... I knew before those test results came back that I was looking at Multiple Sclerosis...

Its a very livable disease. I have 3 kids, finished 3 degrees and am writing my dissertation, all while working in sales, traveling across several states and working 50+ hours a week...I run a household, volunteer, and manage to have time for me....having MS isnt the problem- its not having enough time in the day!

Hang tight..answers are there, but you have to have the correct tests to find them.
Nikki
Thank You MSNIK

You explained things I didn't know as well.

 
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Old 02-02-2013, 07:37 AM   #9
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Re: Doctor says concern for possible ms

Quote:
Originally Posted by LadyLee4 View Post
Thank you all for your kind words, information and support. Just to clarify a little more I had my first mri done with and without contrast and it said I had several tiny foci in the white matter. My other two mri's were without contrast. Pcp took alot of blood and ran tests and those came back "relativly normal". I would like to ask one more question if i may, is ON exclusive to ms or are there other reasons for ON? I know im not alone but it feels that way at home because I dont want to bother or freak out my kids and my 2nd oldest just had my first granddaughter 4 months ago and I dont think its fair to burden her with everything she has going on so what I am trying to say is you guys are sincerely appreciated more than words can actually say especially from someone like me who really doesnt have anyone to talk to about this.
I hope i am doing this texting and reply thing right lol
ON can be a separate disease/disorder or it can be a part of MS. If you have ON only, then the other symptoms would likely not be related, that is, the people with whom I correspond who have ON, only have ON and no other symptoms. If you have ON, you would be monitored to make sure that your ON did not develop into MS. In Japan many MSers started with ON as their first symptom, but in recent years this has started to change.

Without a definitive diagnosis, it would only cause stress levels to rise for the household. You do not need stress at this time- or any time. Stress is not your friend. I was reading just last night about the increase in Shingles among younger adults and the doctors feel that this is stress induced.

Keep writing to us here and we can walk you through. Whatever you have, you are going to make it. You need to stick around to see your great-grandchildren -a worthy goal!
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