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  • Diagnosis of sensory MS!

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    Old 05-14-2008, 02:36 PM   #1
    Gavi112
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    Diagnosis of sensory MS!

    I have had weird neurological symptoms for past 27 yrs nearly all sensory and or pain all over my body. 7 yrs ago had brain mri which showed extensive lesions accross top of brain but neurologist said wasnt conclusive for ms as not in classic places of brain, wait and see. Had another brain mri 3 yrs later no change so again wait and see. Continuing sensory symptoms that are classic to ms so back to neurologist today. I have no loss of function or weakness and okay on nearly all my neurological tests but couldn't do the toe to heel walk without falling.

    This was a really nice neurologist unlike last one who said " can't diagnose ms without a classic symptom like optical neuritis go away and see what happens".

    This Dr explained that there is a fairly new diagnosis of a mild form of ms that I have exact symptoms of - abnormal brain mri with lesions but not in classic ms places - sensory and pain symptoms that come and go completely - no persistant numbness or loss of function. He said they call it sensory ms???

    I have recently had complete spine mri which showed no lesions - so neurologist wants another brain mri to see if anything has altered in last 4 yrs.

    Has anyone else heard of this diagnosis

     
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    Old 05-14-2008, 03:04 PM   #2
    Bearygood
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    Re: Diagnosis of sensory MS!

    Nope. Never heard of this diagnosis. I think most of us who are mild are thankful that we ARE mild today -- but we are aware that this might not always be the case.

    In terms of your lesions not being classic for MS, yes, MS CAN present itself less typically and this does make a dx harder.

    One other thing I will add though, although NOTHING is definite with this disease, it is generally thought that people who experience sensory sx at the outset (as opposed to motor problems) will have a more mild course. (But even then, there are unfortunately no guarantees.) I believe that this might be what you're doctor is going off of but as far as a "sensory" dx, never heard of it. If you find out more about this "new diagnosis", please let us know and of course, do keep us posted on your situation.

     
    Old 05-15-2008, 07:21 AM   #3
    Gavi112
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    Re: Diagnosis of sensory MS!

    Thanks - I think my neuro was just calling it this to make explanation easier. He also said some neuros are still reluctant to diagnose ms when the lesions are not in classic areas of brain even though patient is experiencing sensory neurological symptoms for many many years. As you said diagnosis is harder if you don't have all the classic symptoms/lesions.

    I am eternally thankful that I only have had for past 20 odd years sensory/pain symptoms which I am used to even if they are disabling.

    One thing I discussed with neuro was that over past 20 odd years I have visited my Dr so many times with these extremely weird pains/skin sensations and ended up being sent for endless medical tests that have all proved normal so not only do I feel a fraud but never any idea what is causing them and they affect all my body. He laughed and said this is classic also with mild ms. If I had a 1 for everytime I have been told I had shingles without a rash I would be very rich indeed!!!!!!!!!!

     
    Old 05-15-2008, 10:15 AM   #4
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    Re: Diagnosis of sensory MS!

    HI Gavi112 -
    I am almost in the same boat as you, except my journey has only been about 5 years. I am 36 and this hell started about 31 years old. All sensory. MY main symptoms are dizziness/imbalance/swaying feeling, nearly 24/7, with some days or weeks of it being gone. I have strange feelings of my legs being not attached to my body or my arms feeling just weird. I also get pain behind one eye sometimes, but I was told my neuro-op, it wasn;t showing signs of neuritis. So, started with GP 4 years ago, been through a zillon tests. I am now seeing an MS specialist who has done 4 MRI scans every 6-8 months. All showing numerous lesions on surface and NOT in the classical MS area. I had all the blood work and Evoked potentials too. Been told throughout this thing that they cannot dx MS based on my findings. Could be migraine disorder or something they they have no idea on. I finally broke down and got an LP, but my results aren't back yet. Long story there, but the hospital that did the test closed down 1 week after I got the test and now the Drs office cannot get a hold of the results. It's been almost 6 weeks. It's crazy.
    Anyway, just wanted to share my story. How old are you and what exactly are your symptoms.?
    Rachel

     
    Old 05-15-2008, 03:03 PM   #5
    Gavi112
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    Re: Diagnosis of sensory MS!

    sounds like we are experiencing same symptoms. I have the constant feeling as if I am walking on a childs bouncy castle if you know what I mean and attacks of sudden vertigo. I started with this constant off balance feeling 18 yrs ago! I also get the shingles without a rash sensations pain that lasts no more than 48 hrs and I have had it literally everywhere on my body over the years - get attacks in my left leg only where my leg feels like a tuning fork it hums in pulses and I have feeling as if ice cold water is trickling down my leg and my thigh muscle twitches constantly. I have on and off the feeling as if I am wearing a very tight corset around my middle, it feels as if it should be numb but the skin in infact hypersensitive - tender - itchy- prickly etc etc.
    I have started to get nerve pain affecting both my arms and legs in exactly same places at the same time ( really weird) but only last about 48 hrs then goes away completely until next time. The list just goes on and on!

     
    Old 05-15-2008, 03:12 PM   #6
    Gavi112
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    Re: Diagnosis of sensory MS!

    Sorry post continued as clicked submit button by mistake.

    I am 46 yrs old and this all started in my early 20's. I have seen three neurologists over the years. I just always thought that I had really weird symptoms and as I said have spent all my adult life having medical tests to rule out other causes of symptoms. My old Gp who retired called all my symptoms "Debbbie syndrome" my name.

    This new neuro said three tests he could do - another mri brain scan- okay. He said evoked tests I could not do as I am severely short sighted so the results would not be reliable and he said lastly a LP. I refused point blank to have the LP as I know someone who was paralysed for weeks after one and neuro said it was the most sensible thing a patient had ever said to him! He said even this test is not totally conclusive.

    I suppose I just want my constant weird sensory symptoms acknowledged as having a genuine cause as getting no answers from all the tests makes me feel a fraud or that I am imagining the symptoms which of course I know I am not - I know a diagnosis doens't alter things one jot but it would help me mentally accept the symptoms if anyone knows what I mean.

     
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