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MISDIAGNOSED WITH MS
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An_240804 posted:
Hello: I am a 60 y/o f that was diagnosed with MS 2007. Last year I had another MRI of the brain and the Neurologist said that I had MS lesions after being on a regiment of AVONEX INJ. each week. I had been taking them for nearly a year. Later I got a copy of the report and the RADIOLOGY read my MRI as NO MS OR DEMYLINIZATION DISEASE of the BRAIN.??? I was so baffled! I told my DR I wanted a second opinion and he was not happy. He was convinced I did have MS based on other clinical findings including LP results. I ended up going to another Neurolgist and he said that the lesions were not MS LESIONS and that I did NOT have it. I waa shocked!!! The only diagnoses the report read was Microvascular chgs of the brain and that is it; along with lesions too. WHAT ELSE CAN I DO??? confused.... having same symptoms and NEUROLPATHY bad. I had a bad DVT/PE in Jan this year and it was only 3 weeks after stopping the AVONEX. My memory is terrible and I have numbness in several areas of my body'; hands, head, feet, etc. I have imbalance and dizziness. Should I get a repeat MRI and see another Neurologist for this again? Please Help Me....
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Neil S Lava, MD responded:
I think that if you are having all these problems you should pursue a diagnosis. Perhaps going to a neurologist that specializes in MS might be helpful.
 
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marly26 replied to Neil S Lava, MD's response:
Hi there An_240804 : I can certainly empasize what you are going through. I would as well suggest seeing a Neurologist if you havent' yet. It sounds to me that your Dr. is basically doing tests (not being happy to do so) which I feel is a negative response to finding out what is wrong. I myself have your symptoms along with many more. Not everyone is the same when it comes to diagnosing MS. There are so many factors to look into through a Neurologist. Your Dr. may not be so happy but its your life you want back. Such may not be the case but lets try and think positive. Demand your Dr. to sent you to a neurologist. I have had MRI's done that gave a wrong reading, it all depends on who is filling out your report and sending it on to your Family Physician. I believe that your Dr. should not be "ticked off" for a better word but he is a Family Dr. not a specialist. Going to a Neurologist, he/she may have different approaches to find out exactly what the problem is. If not MS, then what. I'm positive that you will get a positive report from the Expert. I wish you well, there is no need either to feel bad about asking your Dr. It is your body, mentally and physically, not his!! My prayers' are with you and I honestly do hope that you find from that "yes" something is not right. Good Luck again and take care. Pls. try not to stress over the changes in your life. Think positive, positive, positive.
 
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rlkrph responded:
An240804: I had a horrible time trying to get diagnosed. One thing I learned is that for 'borderline' MS cases it is really useful to see an MS specialist. I started out seeing neurologists (not specialized in MS) who ordered a brain MRI on an open MRI machine. The radiologist said the results were not consistent with MS, even though there were T2 enhancing lesions. Later, an MS specialist read the same MRI and said it was consistent with MS!!! The MS specialist also made me have more MRIs on a 3 Tesla machine which would show more details, he said the open MRI machine was not good enough to see the MS lesions.

Definitely - see an MS specialist. I saw 5 neurologists in 6 months and was finally diagnosed. It is incredible to me that non-MS specialists were so ignorant about diagnosing MS.

Rachel
 
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marly26 responded:
If your own Physician told you after having tests' done and medication given to you it just doesn't sound right that now a Neurologist is saying "NO". With even having your Physician baffled. I'm not saying to find another Neurologist however I would definetly have another MRI done, a spinal tap, everything that is required to determine whether it is MS. Could the Avonex Inj. helped with what your Physician said was MS. It is hardly likely that when your told "yes" MS and then "no" This disease does' not just disappear. You are still having symptoms that are unexplained then. I know myself that I had an MRI done and the Technician read the report wrong and the MRI had to be redone. Could this be a possibility. I myself am at a point of getting tested due to the unexplained pain I am in, now your making me wonder. Just as I have 2 pinched nerves in my back and 3 vertabrae that have joined, yet the last Back Specialist I seen took an x-ray, not an MRI and told me that there was nothing wrong with my back and if I didnt like what he had to say to bad. Prior to, my Physician was having me go to another Back Specialist who told me I needed surgery. I often wonder myself, are these people out to help you or just make you feel less of a person. You know yourself the pain your in, your previous diagnosis. Look for another Neurologist, your Physician may not like it but you are the one suffering not he/she. Type in Neurologists' in your area and see what kind of comments are left from others'. I believe you type in Physicans Ratings and when you find one that has a 4 or 5 star tell your Physician you would like to see that Neurologist. I wish you luck and a much better explanation as to what is causing you the pain your in if it isn't MS, then what is it??
 
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Rory26312 responded:
Hi

This is probably the last thing you want to hear but start again with a neuro who specialises in MS. Make sure the actually read the MRI's themselves as the report is only as good as the personwho reads it.

The chances that DVT/PE is related to MS are thin but it seems unusual that it happened so soon after quiting the Avonex.

Hope this helps some

Rory


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