This is my first time reaching out online, I was diagnosed in 2005 with MS. I still question if they are right. I have been to 2 neuros, both say MS. 1st mri was of the cervical spine done by an orthopedic specialist in 2004 and there was a 1.2 cm focus T2 signal abnormality. I had a brain MRI in the beginning of 2005 which had bilateral periventricular/pericallosal foci T2 hyperintense signal with typical appearance of demyelinating plaques. A CSF also done in 2005 showed elevated IgG in both the serum and CSF and no oligoclonal bands. My symptoms began in 1998 involving severe neck pain where on some days I could not get out of bed, back then it was associated with my scoliosis. Also had severe knee/leg pain and experienced foot drop on different occasions. Primarily all of my problems are on the left side, I now have a permanent limp, left leg very weak, numbness, in left leg and left arm and hand. Severe pain in left knee and leg. I wear a noprene knee brace to help with pain when I walk. I do take AVONEX, and have been for about a year. I do not see any improvement. I am feeling like I have been diagnosed incorrectly and worry about taking this medication. I would appreciate any feedback. Thanks, RubyLucy
Hi, rubylucy, and welcome. Re: the opinions you've gotten, were they both from an MS specialist (and do you see one now) or were/are they both regular neurologists?
Also, when was the last time you had an MRI and do they regularly test your blood to see if the Avonex is having any negative effect? (I hope the last time you had an MRI was not in 2005!)
Specifically regarding the DMDs, they are designed to hopefully slow progression but not everyone has success with one or another of them and even in those who don't present new lesions or symptoms, there is really no way to absolutely prove beyond a doubt that these are attributable to the drug.
Please give us more info. and we will try to help.
Both of the neurologists are not MS specialists, I have had MRI of the brain, cervical, thoracic and lumbar done in 2006, these were the last ones. The second one of the brain stated it was essential unchanged from the 1st one. The impression was: There are several bilateral white matter lesions present. The primary consideration is multiple sclerosis. The cerivcal spine was also unchanged. Thoracic spine notes scoliosis and the lumbar spine shows a nodule in L-4 which states it is felt to be a prominent venous lake.?
I have a lot of the symptoms of MS, but feel like it could be misdiagnosed. My current neuro had referred me to a rheumatolgoist a couple of years ago due to a very high ra factor, but the rheumatologist ruled out rheumatoid arthritis and agreed with the MS diagnosis.
Since I have been diagnosed, I notice that I have a harder time walking and that appears to be getting worse, even though I have am taking the medication. I started on copaxone, but had the side effect where you can't breath and pain and that's when I was switched to AVONEX.
I see my neuro every 3 months and he has noticed the progression. My left leg is now smaller than the right and much weaker. He feels I should continue the medication but doesn't push it. He made the comment some time ago, his job is a lot easier if I don't take it. I have had blood tests since being on the meds and they come back normal.
ruby, first of all, I suggest you look up the McDonald criteria for dxing MS. (Make sure it's the updated 2005 guidelines -- you can find them in a lot of places, including the NMSS site.) I think there's probably more to your story because to be honest (and I am not saying that you do NOT have MS) I've seen people with MRIs similar to yours who can't get a definite dx, even though MS is suspected.
If your blood tests are always normal, that's a good thing in terms of the drug but from what you're describing, it sounds like Avonex might not be working for you. Clinically speaking, this would be assessed not only basted on blood work, but if there are new or active lesions. The only way to look at this is an MRI, with and without contrast. If your last MRIs were in 2006, you are certainly due for another set -- if not OVERdue. If I were you, I really would think about seeing an MS specialist. MS is such a highly specialized field and although it's great to have a neuro well versed in the area, IMHO, it does not EVER take place of a specialist. At this particular moment in time, my best advice for you is to get a referral to an MS specialist.
[QUOTE=Bearygood;3402538]ruby, first of all, I suggest you look up the McDonald criteria for dxing MS. (Make sure it's the updated 2005 guidelines -- you can find them in a lot of places, including the NMSS site.) I think there's probably more to your story because to be honest (and I am not saying that you do NOT have MS) I've seen people with MRIs similar to yours who can't get a definite dx, even though MS is suspected.
If your blood tests are always normal, that's a good thing in terms of the drug but from what you're describing, it sounds like Avonex might not be working for you. Clinically speaking, this would be assessed not only basted on blood work, but if there are new or active lesions. The only way to look at this is an MRI, with and without contrast. If your last MRIs were in 2006, you are certainly due for another set -- if not OVERdue. If I were you, I really would think about seeing an MS specialist. MS is such a highly specialized field and although it's great to have a neuro well versed in the area, IMHO, it does not EVER take place of a specialist. At this particular moment in time, my best advice for you is to get a referral to an MS specialist.
Avonex did not work for me. I was switched to Copaxone, not an interferon. It takes about 7 months to see the full effect. I can walk longer, still have cramping, but without it I would be in a wheelchair. Check out, search Multiple Sclerosis and look at MRI's Good Luck
