I am responding to Quix aewsome breakdown of MS and thehistory of MS. I learned so much from that. My question is if you have taken every test that they offer for MS they are all negative does that mean that you do not have MS or can you still be cliniclly diagnoised. Thanks so much for all of your help this forum has been a god send. Thanks Jobs
Wow....that really is kind of an "ultimate" question. If you have characteristic attacks and the doctors can show different "objective" signs on the exam then you can get a diagnosis without having any tests. That is not what you asked I know, but I have to fill in some stuff. Very few neuros will do this.
You can have MS with a negative MRI. Have you had MRIs of the brain AND the spine (both cervical and thoracic)?
You can have MS with a negative LP.
You can have MS with negative Evoked Potentials.
Once you have had all of these tests and they are all negative, I believe that there is a tiny (read that tiny!!) chance that someone could have MS, but I also believe you will NOT be diagnosed with it. With every test that is negative your chances of having MS drop. I can't imagine the neurologist who would ignore a totally negative workup. It would make me want to look VERY hard for one of the mimics.
What were the findings on the spinal tap?
Is your physical exam negative? Have you had the Visual Evoked Response (because of your tunnel vision - though that would be an unusual thing in optic neuritis - sounds more like a migraine without headache)? And have they done a SomatoSensory Evoked Potential, or even EMG or NCS, for the numbness in your hands.
Also, a good neurologist will schedule a repeat MRI in 3 to 6 months if the history and exam are suggestive.
You need to read the thing I wrote on the current thinking about diagnosing MS. It's about the McDonald Criteria. I'll try to find it tomorrow.
Do you also have any depression? I think I hear it in the frustration and the sense that it seems futile. Depression is a primary symptom of MS. If the doctors are sensing depression, very often they won't look farther and just dismiss you, rahter than taking that into the whole picture. Is it your regular, primary doctor that suspects MS?
I hope you stay with us, because you do need some place to share this horrible place with no diagnosis. It's like being on the Dark Side of the Moon.
I have not had my spinal tap yet I am having it on Monday. I have a had a negative MRI, EMG, the schock test, needle muscle test and the vision field test. I have had 2 doctors give a positive physical exam for Romberg test and nistagmis a believe that is what it is called. IT was a reumotoligist and a dieseise specialist that diagnosed me with possibel MS then referred me for the other tests and to see the neurologist.The reason I was asking you this question is becuase if the spinal tap comes back negative I just don't know what i am going to do. I am thinking of giving up. When I read your description of the MS it just sounded like a lot of people may not show lesions on the mri or on spinal tap at first and they can be clinically diagnoised. There is defiantly somehitng wrong that is for sure. I have had several doctors that have witnessed this. I was hospitalized back in May 2007 for 23 days it got so bad. I have extreme sensitivity to heat to the point that my skin turns blistering hot red and stays that way with any amount of hot water is put on it.
The depression has come on. I am a really outgoing person always been involved in volved in a lot of activities and work and all that well now that I am disabled I do nothing. I don't drive I don't do anything. My friends don't call me anymore and my husband and I used to do things every weekend so sad, I try not to seem depressed when I go into the doctors office becase I don't want them to think that It is all in my head becuase It is not that is for sure. I would do anything to just wake up tomorrow and be back to normal. Thanks for listening you have really been helping so much. This has been such a hard time. Hope to hear from you soon.
I understand the frustration with all the testing - I can definitely emphatize with you. I too have had many tests, but still a ways to go. At this point, I really dont know what is going on, but something is (migraines, numbness/tingling, weakness, aura, etc.
I agree with one of the other posts in that it is important to limit your signs of frustration when visiting new doctors. if it is stress, then maybe destressing can help, however if some (not all) professionals believe that you are stressed, the testing will stop and your situation will be considered stress induced. I had one neuro tell me that I am stressed out, but never reviewed my medical history nor conducted any tests....so go figure. Since then, I went to a new doctor and testing has been expanded, things are starting to pop up. You should consider looking at your diet if you havent already as well as tackling symptoms independently rather than one big problem - the symptoms might not be related at all.
For me I always thought the numbness and tingling were related to the migraines, and they seem to be, but since I mentioned to my neuro that they can be different and so on, I have be directed to different tests, which now are showing some abnormalities. I am still waiting to understand the big picture, but I am definitely better off now. Ruling out is just as or even more useful than ruling in. good luck with your health. If it is MS, it might take a while longer before you see results on imaging or such, especially if the case is mild.
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