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Old 04-30-2009, 11:35 AM #1
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Yes, sometimes lesions don't show up at first or they are too small to detect.
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Old 05-01-2009, 09:10 AM #2
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Yes, sometimes lesions don't show up at first or they are too small to detect.
This being true and all MS drug trials basing their results on the number of lesions they see on MRIs, what does this say about the accuracy of the trial data? Just a thought.

Harry
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Old 05-03-2009, 10:38 AM #3
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This being true and all MS drug trials basing their results on the number of lesions they see on MRIs, what does this say about the accuracy of the trial data? Just a thought.

Harry
I agree, Harry . . . lesions (and/or relapses) are probably not a good measure of efficacy. In fact, I don't think # of lesions are even a legitimate measure, are they? Isn't the primary measure a reduction in disease progression (as measured by our EDSS), and secondary, a reduction in relapses?

I think this is just a new way to try to market the efficacy of our meds . . . "More patients are disease-free with X med". What the he!! is "disease-free" . . . guess that means we are cured, huh?

Lesions, no lesions, inflammation, no inflammation, 3 months of good EDSS results . . .

TIME will tell.

Cherie
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Old 05-03-2009, 09:27 PM #4
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Thanks so much for all of you who have responded, I really appreciate it. I can see why so many just hang around .

One other question in regards to my case, I started with the pins and needles in my left hand last year which lasted several weeks, I can't remember exactly how long but eventually it went away completely. Then I experienced it again several times with periods of nothing (making me think it was a fluke). Then my right hand started. Then eventually my feet. Now I feel the pins and needles further up each arm and leg. It seems to me that this is a sign of progression. I've only had one time where the pins and needles turned into a very painful experience for three days, it felt like fire in my hands (it had not progressed to my feet/legs yet). Has anyone else experienced this or heard of this in relation to MS?

I'm just trying to get a feel for this. If it's not MS then great but if it is then maybe I'll get a better handle on what to do and how to treat it?

Thanks for all the support.

Right now the Dr. is suggesting a lot of destressing activities, he is a family practitioner who practices integrative medicine which is why I'm seeing him, I like that approach. He's suggesting Raiki and visualization. I definitely believe in these things but my gut tells me that it's more than just stress causing these symptoms. I almost just wish that the MRI would show something if it is MS, it's frustrating.
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Old 03-24-2010, 09:23 PM #5
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I presented with a numbish, tingling sensation that crept up the whole right side of my body. Very distressing to say the least. My doc would have bet me $100 that I had MS based on my symptoms and history....then I had an MRI and nothing! All that really means is they can not give a definate diagnosis without those lesions! Anyway, doc said "Oh well, lets just see what happens since you are feeling better" She had me return in six months for a follow up and I told her I was feeling much better but had a new little funny sensation over my top lip.....burning, tingling and numbish. Well, she opted for another MRI scan and (in that six month time span AND actually feeling BETTER) I had lots of lesions on the new MRI. Now they show up after 12 years of wierd medical issues that know one could explain.....I guess I finally nailed the right time and the right place with the right doc in the right amount of disease activity. Whatever it is...it is SOMETHING so don't allow yourself to feel crazy....just stay proactive and write down everything you experience on a daily basis so your doctor can actively see the patterns.
Let him see a normal week for you.
V.A. doesn't have a specialist for you? I was a military wife for 20 years and I can say I didn't always care for the medical care....hope you can get some help soon. Big Hugs
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Old 03-24-2010, 09:42 PM #6
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I'm in lurve with your doggy George.
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Old 03-25-2010, 12:39 AM #7
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Thanks Sally, he's the main reason I get out of the house. Everyone should have a George!
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Old 03-29-2010, 02:22 PM #8
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kristen8283, I just registered as a member to this web site just a few minutes ago. I know what your going through, it's called "medical hell". It took about 6 years for me to be diagnosed and I was just diagnosed last October. I'm so tired of incompetent doctors. they did one non-contrasting MRI on my brain with a very weak MRI and from that result declared that I absolutely did not have MS and never looked in that direction again. I had to do all my own research and demand the tests that I thought I needed. Finally I got a contrasting MRI of my spine and low and behold that is where my lesions are. I've got 2 very small lesions on my brain that could not be detected on a non-contrasting MRI, my lesions are on my spine. I finally found a MS specialist that found it, he did contrasting and non-contrasting of my brain and spine. He is the Dr. that finally found it. He said he had heard many stories just like mine. I thought I was loosing my mind! I'm dealing with anger issues right now, but it's not because of having MS, it's about how I've been treated, not only by the medical community but also by my friends. I used to run 2 miles every morning until the weakness, balance and fatigue overcame me, I was very fit and healthy, a size 6. Then of course I gained weight and a friend told me that the only thing wrong with me was that I was just getting older and possibly going through menopause and that I was just going to have accept that I wasn't going to be slim and pretty all my life. People said that I couldn't have MS because I was too old. The last four years have been so hard, there is no support group in our area and I'm angry. Again I'm not angry about having MS as a matter of fact I felt victorious when I found out that I did indeed have MS. I had done so much research on so many different diseases and it always came back to MS. It's been the treatment from some friends and my spouse that has caused this anger, I wasn't able to even say MS in my home or around some friends, so I just kept my mouth shut.
Keep searching for answers, find a Dr. somewhere that will listen to you. I did and it's really paid off. Thanks for letting me vent.
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Old 03-30-2010, 12:55 AM #9
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wow, that's amazing. I'm not sure if I have your guts. I am seeing another doctor (out of pocket) tomorrow and am not sure if I should ask if that is how they should do my MRI. How do you bring that up without the doctor getting mad? The neuro I saw made his dx in the first minute, in my opinion, that it's all in my head.

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...did one non-contrasting MRI on my brain with a very weak MRI and from that result declared that I absolutely did not have MS and never looked in that direction again. I had to do all my own research and demand the tests that I thought I needed. Finally I got a contrasting MRI of my spine and low and behold that is where my lesions are.
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Old 03-30-2010, 09:56 AM #10
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wow, that's amazing. I'm not sure if I have your guts. I am seeing another doctor (out of pocket) tomorrow and am not sure if I should ask if that is how they should do my MRI. How do you bring that up without the doctor getting mad? The neuro I saw made his dx in the first minute, in my opinion, that it's all in my head.
Hey I hope I'm doing this right. I'm responding to your question about making your Dr mad. I guess I did make him mad, but you have to remember your Dr. is YOUR employee, you pay him. You're not a good boss if you permit incompetency in your workplace, much less in your life and health. He told me I needed to stay off the internet, it was putting ideas in my head. I told him he needed to get into his profession and do some research like I have done so that he and I could have an intelligent conversation. This doctor was my family Dr. not a specialist, He would tell me there are a lot of illnesses that have similar symptoms like MS so I asked him to name them and set up the tests for them. He couldn't name any except for lymes disease which had already been eliminated. When I rattled off 6-8 diseases that could possibly mimic MS he was speechless. He looked like a deer in headlights. I asked him "you don't know any of those diseases do you?" He just laughed, that's when he said I needed to stay off the internet. I told him I was a very intelligent woman and he needed to do some research so the next time I came to his office we could have an intelligent discussion about my symptoms and diagnosis. I saw him a few more times because I needed his referrals, but from then on I told him what I needed him to do as far as specialist and referrals. Dr's are not Gods they are just people and sometimes not very intelligent people.
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