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Old 01-15-2007, 07:31 AM   #1
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agravy HB User
diagnosis w/out all criteria

I know someone from Atlanta who has had ms for 11yrs. She says that now you can get a diagnosis based on attacks and sx's only. She says nuero's are trying to get a jump on the disease to prevent furter damage. I have 1 lesion on c-spin, borderline evoked potentials, slightly elevated mylen basic protein, 2 attacks of paralysis, neurogenic bladder now sausing me to self-catherize 4xdaily. I am also on 45mg. of baclofin & 1200mg of neurontin for severe muscle spasms & cramping & pins & needles. I was wandering if anyone has heard of getting an earlky dx based on these findings & if so where from. Thanks for your input in advanced.
Alicia

Last edited by agravy; 01-15-2007 at 07:32 AM.

 
Old 01-15-2007, 08:40 AM   #2
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Re: diagnosis w/out all criteria

Alicia,

I was diagnosed with no lesions,test results evoked potentials abnormal,the high IgG synthesis,high myelin basic protein,a VNG its like a evoked potential for the hearing came back with brain stem lesions.The brain MRI did show atrophy consistant with MS.I have INO a nystagmus consistant with MS paitients.

I got frustrated with my first 3 neuro's saying yes its MS,but can't treat it because theres no lesions.I had gotten a letter from a local clinic that a new neuro had come to the clinic and would I like to make an appointment with him,so i did.I took everything to him MRI's , blood test results,evoked potential results,he done his exam and said you definatly have MS and told me to get informed about the crabs.I start rebif this afternoon.

He said it would slow the progression,I have lost part of the use of the right leg,hearing loss,muscle spasms,vision problems ,numbness and a host of other annoying symptoms.

I am in Ohio.

 
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Old 01-19-2007, 04:13 PM   #3
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Re: diagnosis w/out all criteria

Alicia,

I was diagnosed without no lesions. My evoked potenials was abnormal for eyes and legs. My LP came back clear. My neurologist knew I was having double vision and that I had some vision loss back in July. He asked me if I had a episode of weakness in my legs in the past 6 months. I did in the summer trying to get from my back porch inside I didn't have the strength in my leg to step up. My son had to help me in. After I told him that he told me to talk to the nurse about Avonex and 3 day of SoluMedrol. I really didn't realize I was dx then with definate MS. It was marked on my check out slip. ICD-9 340. It was when I got the email from Avonex that my doctor ordered my medication. I talked with Avonex case manager and there is no way you get Avonex without a definate dx. I was diagnosed within 2 months. I guess my dx was based on ruling everything out, evoked potentials and clinical evidence and two attacks. I have been seeing this neurologist since 1992.

Bunni

 
Old 01-21-2007, 11:09 PM   #4
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Re: diagnosis w/out all criteria

I was diagosed after MRI showed lesions on the brain, a positive LP result and one attack. Normal evoked potential tests. Positive LP is what made my doc finally say yes to MS. He was very resistant to a MS diagnosis until that point. Most people don't fully meet the criteria. My neuro even told me the criteria is really only out there for research purposes as hardly anyone is text book.

 
Old 01-22-2007, 10:52 AM   #5
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agravy HB User
Re: diagnosis w/out all criteria

Well, the appt. went ok. After examining me he wanted to schedule another mri of lower spine due to my bladder problems(have to self- cath. 4x daily). I told him what can we do when everything keeps daying nothing? He said sometimes these things take time to really show up & that we have an idea of what it is and we'll just keep going until we get the answer. What does that mean? AIs he saying he thinks I have ms & he's waiting on definite proof or what? I'm so confused. Plus, the baclofin had caused me to gain 34lbs. in 3 mts. so he is tapering me off that & I'm adding xanoflex. The baclofin was working wonders, but I wnt to kow if anyone is or has taken xanoflex.

 
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