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My Recent Posts · (30/10/09

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Dr. has said possible MS, and I am on the road to finding out what has been going on with me.

. I had my first MRI yesterday, brain and brain stem, with and w/o contrast. The tech told me that the MRI may not give evidence that I have MS, I told him that is why I was having it. Is this true? Can they diganose MS , if the LB or spine MRI shows nothing? Can the doctor diagnose MS purely on symptoms?

I have had these weird flare up , episodes for over 10 years , I am 42 now. I was told it was fibromyalgia and just delt with it. But my friends fibro pain were never like mine. My horrible flare ups would be on one side of body only, starting down in my foot and going up my right side into my eye socket. It wasnt like feeling the flue symptoms it was like a whole right side body migraine. I have had true migraines and I know how they feel.. a shot of demereol and phenergan is all that would work.

So a few years ago more sypmtoms started and these are what made me look into possible misdiagnoises of Fibromyalgia.

Only right side pain.. it spreads, travels.
Horrible muscle pain , spasm you can see , as well as feel
Horrible eyeball, socket pain, seems like my eyes is droopy even
My speech is slured at times,
thoughts and words are hard to put together, I have to think hard and then words dont come out normal

The scariest is this one....I feel I can not swallow, I feel I cant even make my own spit go down, I feel I am going to choak and any given week I do choak on my drink or food , I never used to do that.

I have so much numbness......I burned my arm really bad, because I didnt pull it away from hot lid fast enought.

I have a total loss of feeling of my skin on my left ankle and top of left foot, it has been like that for 2 months, no feeling at all, and not getting better.

I have had numbness in my vaginal area,,, my bladder has leaked much more lately .

This is just a bit of why I think I have MS.

This doctor I am seeing is the first one to really listen to me and agrees it should like MS.

Again.. will they diagnose me on symptoms if the test come back showing no lesions?

Thanks so much for your time , Dede

My Recent Posts · (30/10/09

HI Dede and welcome to the MSRC Boards. You have come to the right place for help, support, and information.

I am going to move your post to the All About MS board as this would be the best place for your post.

kind regards

squiffs

My Recent Posts · (01/11/09

Hi and welcome!

I'm afraid there are no hard and fast rules about diagnosing MS. Some Drs are loathe to diagnosis anything which they can't cure, feeling we are better off not having that knowledge. Apparently we are all such frail little flowers we will give up!! Yeh well they got THAT one wrong!
However most people seem to want to know what they are up against because there may not be cures but there are lots of things people get help and relief from. I think the 'keep them ignorant' strategy is particularly unforgivable if not dangerous given current theory that if you are going to use Disease Modifying Treatments they should be used sooner rather than later to get the best effects from them.

It is possible to have symptoms of MS but for there to be no indications or lesions on an MRI. There are other tests such as Evoked Potential(EP) and Lumbar Puncture (LP) which can also be used. However I do know of someone whose symptoms were ongoing and she got a diagnosis but with a clear MRI but positive LP. Again it really depends on the Neurolgist. A lot will adhere to the protocol of MRI evidence and 1 or more identifiable episodes. Can I ask where you are being seen?

You do seem to have a number of symptoms which other have reported as their experience of MS. One important thing is to know that there is no one set of MS symptoms so be do not be fobbed off by phrases such as 'None of my other MS patients complain of XYZ'. So you're his first -how novel for him/her and how nice of you to inject something new into his/her day! My first MS symptom was referred to as being unusual for a first MS symptom. Well I couldn't help the order in which my body decided to go wrong! I felt that it somehow wasn't acceptable when I now know it is actually a common symptom - just not as a first symptom.

The results of the MRI are very quick these days so make sure you get an appointment ASAP to get the results. There's absolutely no reason for a delay. Delays and not knowing can, in my opinion, be far more damaging than the actual knowledge/diagnosis.

Whatever the outcome, whatever you are feeling at this time, this is a place to let it all just be. No-one will judge you, your symptoms or your reactions. We all have differnt experiences so there's usually someone who will be thinking 'mmm remember that well' as they read your postings!

Anne
AKA Cecilia Duracell Bunny -that's another story!

Author	Comment
dede66	Hi New here and wonder what ya'll think..	Lead	[-]
Posts: 1 (30/10/09 02:30) Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts Report Post	Tags : None Dr. has said possible MS, and I am on the road to finding out what has been going on with me. . I had my first MRI yesterday, brain and brain stem, with and w/o contrast. The tech told me that the MRI may not give evidence that I have MS, I told him that is why I was having it. Is this true? Can they diganose MS , if the LB or spine MRI shows nothing? Can the doctor diagnose MS purely on symptoms? I have had these weird flare up , episodes for over 10 years , I am 42 now. I was told it was fibromyalgia and just delt with it. But my friends fibro pain were never like mine. My horrible flare ups would be on one side of body only, starting down in my foot and going up my right side into my eye socket. It wasnt like feeling the flue symptoms it was like a whole right side body migraine. I have had true migraines and I know how they feel.. a shot of demereol and phenergan is all that would work. So a few years ago more sypmtoms started and these are what made me look into possible misdiagnoises of Fibromyalgia. Only right side pain.. it spreads, travels. Horrible muscle pain , spasm you can see , as well as feel Horrible eyeball, socket pain, seems like my eyes is droopy even My speech is slured at times, thoughts and words are hard to put together, I have to think hard and then words dont come out normal The scariest is this one....I feel I can not swallow, I feel I cant even make my own spit go down, I feel I am going to choak and any given week I do choak on my drink or food , I never used to do that. I have so much numbness......I burned my arm really bad, because I didnt pull it away from hot lid fast enought. I have a total loss of feeling of my skin on my left ankle and top of left foot, it has been like that for 2 months, no feeling at all, and not getting better. I have had numbness in my vaginal area,,, my bladder has leaked much more lately . This is just a bit of why I think I have MS. This doctor I am seeing is the first one to really listen to me and agrees it should like MS. Again.. will they diagnose me on symptoms if the test come back showing no lesions? Thanks so much for your time , Dede
squiffy2		#1	[-]
Posts: 25528 (30/10/09 06:41) Administrator Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts Report Post	HI Dede and welcome to the MSRC Boards. You have come to the right place for help, support, and information. I am going to move your post to the All About MS board as this would be the best place for your post. kind regards squiffs squiffy Squiffys House of Fun - laughter for MS "I have abandoned responsibility and have embraced frivolity"
Cecilia Duracell Bunny	Hi new here....	#2	[-]
Posts: 523 (01/11/09 08:44) Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts Report Post	Hi and welcome! I'm afraid there are no hard and fast rules about diagnosing MS. Some Drs are loathe to diagnosis anything which they can't cure, feeling we are better off not having that knowledge. Apparently we are all such frail little flowers we will give up!! Yeh well they got THAT one wrong! However most people seem to want to know what they are up against because there may not be cures but there are lots of things people get help and relief from. I think the 'keep them ignorant' strategy is particularly unforgivable if not dangerous given current theory that if you are going to use Disease Modifying Treatments they should be used sooner rather than later to get the best effects from them. It is possible to have symptoms of MS but for there to be no indications or lesions on an MRI. There are other tests such as Evoked Potential(EP) and Lumbar Puncture (LP) which can also be used. However I do know of someone whose symptoms were ongoing and she got a diagnosis but with a clear MRI but positive LP. Again it really depends on the Neurolgist. A lot will adhere to the protocol of MRI evidence and 1 or more identifiable episodes. Can I ask where you are being seen? You do seem to have a number of symptoms which other have reported as their experience of MS. One important thing is to know that there is no one set of MS symptoms so be do not be fobbed off by phrases such as 'None of my other MS patients complain of XYZ'. So you're his first -how novel for him/her and how nice of you to inject something new into his/her day! My first MS symptom was referred to as being unusual for a first MS symptom. Well I couldn't help the order in which my body decided to go wrong! I felt that it somehow wasn't acceptable when I now know it is actually a common symptom - just not as a first symptom. The results of the MRI are very quick these days so make sure you get an appointment ASAP to get the results. There's absolutely no reason for a delay. Delays and not knowing can, in my opinion, be far more damaging than the actual knowledge/diagnosis. Whatever the outcome, whatever you are feeling at this time, this is a place to let it all just be. No-one will judge you, your symptoms or your reactions. We all have differnt experiences so there's usually someone who will be thinking 'mmm remember that well' as they read your postings! Anne AKA Cecilia Duracell Bunny -that's another story!

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