Aa
All lesions resolved
Hi all,
I'd really appreciate an answer to this because it's been driving me insane. Any responses at all would be great. I was diagnosed with MS over a year ago. Having never had symptoms before I had a very long list of things go wrong with me, and was getting worse for about 8 wees, and so had an MRI showing 3 lesions and a lumber puncture which showed OCBs and 20 white cells. At the time the neuro said he was certain it was MS but wanted to wait before starting any treatment. When I saw an MS specialist she thought I'd had 2 flare-ups and recommended treatment but I deferred. When I had another MRI with contrast (none without) in may it showed nothing. The (juniour)neuro in the MS clinic seemed flabbergasted that my lesions had gone. I asked if that could happen in the early stages of MS and he seemed to think it was amazing. I was supposed to make another appointment for a few months time but to be honest I was quite distracted and completely forgot, and while one of the nurses there said she'd make one for me I assume she also forgot because I haven't heard anything from them. I would really really appreciate it if anyone could tell me anything they might now about this sort of thing, because I'm not in a hurry to ring myself and make an appointment since to be quite honest (I'm leaving out explanatory details about why) I don't think I can go back, I was extremely upset after that appointment. All I would have liked was for someone to say "It's possible you don't have MS" or "MS lesions can heal up and this doesn't mean you don't have MS" or "MS lesions shouldn't all resolve, you may have had ADEM".
Has this happened with anyone else here?
I'd really appreciate an answer to this because it's been driving me insane. Any responses at all would be great. I was diagnosed with MS over a year ago. Having never had symptoms before I had a very long list of things go wrong with me, and was getting worse for about 8 wees, and so had an MRI showing 3 lesions and a lumber puncture which showed OCBs and 20 white cells. At the time the neuro said he was certain it was MS but wanted to wait before starting any treatment. When I saw an MS specialist she thought I'd had 2 flare-ups and recommended treatment but I deferred. When I had another MRI with contrast (none without) in may it showed nothing. The (juniour)neuro in the MS clinic seemed flabbergasted that my lesions had gone. I asked if that could happen in the early stages of MS and he seemed to think it was amazing. I was supposed to make another appointment for a few months time but to be honest I was quite distracted and completely forgot, and while one of the nurses there said she'd make one for me I assume she also forgot because I haven't heard anything from them. I would really really appreciate it if anyone could tell me anything they might now about this sort of thing, because I'm not in a hurry to ring myself and make an appointment since to be quite honest (I'm leaving out explanatory details about why) I don't think I can go back, I was extremely upset after that appointment. All I would have liked was for someone to say "It's possible you don't have MS" or "MS lesions can heal up and this doesn't mean you don't have MS" or "MS lesions shouldn't all resolve, you may have had ADEM".
Has this happened with anyone else here?
It's certainly possible that the new MRI was done at a lower strength than the old one, it was done in a different hospital. As for the chest x-ray I think it's just a perfunctory test they're doing rather than one to actually find anything.
I think the neurologist I saw just needs a better poker face and to actually read the medical history so as to be less surprised when informed a patient previously had lesions and OCBs.
I think the neurologist I saw just needs a better poker face and to actually read the medical history so as to be less surprised when informed a patient previously had lesions and OCBs.
here's what the Mayo clinic writes about diagnosing sarc, and it does include the possible use of x-rays-
"Sarcoidosis can be difficult to diagnose, partly because the disease produces few signs and symptoms in its early stages. And when symptoms do occur, they vary by organ system affected and can mimic those of other disorders. A variety of diagnostic tests can narrow the possibilities and rule out other conditions.
Imaging tests
X-ray. A simple chest X-ray can reveal evidence of lung damage or enlarged lymph nodes in your chest. In fact, some people have been diagnosed with sarcoidosis before they have any symptoms — from the evidence provided by chest X-rays taken for other reasons.
CT scan. Computerized tomography (CT) uses a computer to combine a large number of X-rays views taken from many different directions into detailed, cross-sectional images of your internal structures.
Lab tests
Samples of your blood may be tested to check your general health and to see how well your kidneys and liver are functioning.
Lung function tests
These tests typically measure:
The volume of your lungs
How much air you can breathe in and out
How fast you can breathe air out
How well your lungs deliver oxygen to your blood
Biopsies
A biopsy is a small sample of tissue taken from a part of your body believed to be affected by sarcoidosis. The sample can be tested for the types of granulomas that are commonly seen in sarcoidosis. Biopsies can most easily be taken from your skin, from lymph nodes right under the skin, or from the outer membrane of your eye.
Lung biopsies can be obtained during a bronchoscopy (brong-KOS-kuh-pee). This procedure uses a thin, flexible tube that contains a fiber-optic camera and a grasping tool. After the tube is inserted down your throat, a doctor uses the grasping tool to remove a small sample of lung tissue — about the size of a grain of rice. The sample is sent to a microbiology laboratory to look for specific organisms. "
http://www.mayoclinic.com/health/sarcoidosis/DS00251/DSECTION=tests%2Dand%2Ddiagnosis
"Sarcoidosis can be difficult to diagnose, partly because the disease produces few signs and symptoms in its early stages. And when symptoms do occur, they vary by organ system affected and can mimic those of other disorders. A variety of diagnostic tests can narrow the possibilities and rule out other conditions.
Imaging tests
X-ray. A simple chest X-ray can reveal evidence of lung damage or enlarged lymph nodes in your chest. In fact, some people have been diagnosed with sarcoidosis before they have any symptoms — from the evidence provided by chest X-rays taken for other reasons.
CT scan. Computerized tomography (CT) uses a computer to combine a large number of X-rays views taken from many different directions into detailed, cross-sectional images of your internal structures.
Lab tests
Samples of your blood may be tested to check your general health and to see how well your kidneys and liver are functioning.
Lung function tests
These tests typically measure:
The volume of your lungs
How much air you can breathe in and out
How fast you can breathe air out
How well your lungs deliver oxygen to your blood
Biopsies
A biopsy is a small sample of tissue taken from a part of your body believed to be affected by sarcoidosis. The sample can be tested for the types of granulomas that are commonly seen in sarcoidosis. Biopsies can most easily be taken from your skin, from lymph nodes right under the skin, or from the outer membrane of your eye.
Lung biopsies can be obtained during a bronchoscopy (brong-KOS-kuh-pee). This procedure uses a thin, flexible tube that contains a fiber-optic camera and a grasping tool. After the tube is inserted down your throat, a doctor uses the grasping tool to remove a small sample of lung tissue — about the size of a grain of rice. The sample is sent to a microbiology laboratory to look for specific organisms. "
http://www.mayoclinic.com/health/sarcoidosis/DS00251/DSECTION=tests%2Dand%2Ddiagnosis
I'm not so sure that an x-ray is the way to check for sarcodoisis. I'm pretty sure it takes something much more sophisticated, otherwise those folks wouldn't also linger in Limbo. and there is more sarc than just what occurs in the lungs.
The only thing I can think of is perhaps your new MRI was done at a lower strength than your old one.
I don't know the strength, in Ireland doctors like to act like hospitals are run by the mafia and do what they can to avoid telling you anything. I had to push to find out what the chest x-ray was for! It was fairly ridiculous.
I also only know what other tests were carried out at the time of my diagnosis because I had an itemised bill from the hospital.
I also only know what other tests were carried out at the time of my diagnosis because I had an itemised bill from the hospital.
It is possible for brain lesions to heal to point where they are not measurable with MS. There are also other possibilities that could explain your lesions. They could have been the product of a viral infection or a vitamin deficiency. That would explain how they could have healed. It is important that you follow up with a doctor, however. This is worth keeping an eye on, especially, with effective treatments available if it is MS. Best wishes!
Yeah I agree with you, it was just the issue that ALL lesions vanished instead of just some of them, and now I had to have a chest x-ray (to check for sarcoidosis - I'm Irish) and a blood test for lyme disease (I'm a geologist, we're lymey people). I'll probably ask one of the doctors here about it all, but thanks for your help everybody!
The train you should be on it to the next doctor and not the one with a nowhere destination. You need a doctor who understands that lesions don't just "vanish" despite MS being such a mysterious disease. This is not a magic act.
Do your research and move on. All aboard???
Lulu
Do your research and move on. All aboard???
Lulu
Thank you all for the very helpful responses. It is really amazing, and it should have been the best news ever.
But I was surprised because I still have slight problems with my right field of vision, and instead of saying anything helpful like "sometimes the healing isn't prefect" the doctor's attitude was "Well all your lesions have vanished, so if you're saying you're still having problems then you are clearly making it up".
Guess I'm back on the "wait and see train" with regards to starting conventional treatment.
But I was surprised because I still have slight problems with my right field of vision, and instead of saying anything helpful like "sometimes the healing isn't prefect" the doctor's attitude was "Well all your lesions have vanished, so if you're saying you're still having problems then you are clearly making it up".
Guess I'm back on the "wait and see train" with regards to starting conventional treatment.
The body is a pretty miraculous machine when it comes to healing wounds. Think of those nicks and scrapes you might get that eventually scab over and heal.
The areas of demyelination we have going on are also the same way - the body tries its best to heal those areas. It is possible for this to look like the lesions have gone away. The reality is the "healed" lesions are nowhere as effiicient carrying signals than their original condition. There areas are still damaged bu not as visible.
That's great news that you have this kind of healing going on -but it doesn't mean the MS is gone.
The areas of demyelination we have going on are also the same way - the body tries its best to heal those areas. It is possible for this to look like the lesions have gone away. The reality is the "healed" lesions are nowhere as effiicient carrying signals than their original condition. There areas are still damaged bu not as visible.
That's great news that you have this kind of healing going on -but it doesn't mean the MS is gone.
And on the other hand, I just came across something recently at the Mayo Clinic website regarding how some people with MS heal much more quickly than others. Apparently, they've found people with a certain immune system mediated healing mechanism heal more quickly and more completely than those without it.
Here is another health page written by our very own Dr,Quix
http://www.medhelp.org/health_pages/Multiple-Sclerosis/Lesions---Can-they-Disappear-A-Hypothetical-Case-Overview/show/566?cid=36
http://www.medhelp.org/health_pages/Multiple-Sclerosis/Lesions---Can-they-Disappear-A-Hypothetical-Case-Overview/show/566?cid=36
Yes, the lesions would still show up. They just wouldn't be enhanced. Here is one of our pages that explains it a bit:
http://www.medhelp.org/posts/Multiple-Sclerosis/-MRI-WITHOUT-contrast/show/733782
http://www.medhelp.org/posts/Multiple-Sclerosis/-MRI-WITHOUT-contrast/show/733782
Thank you for responding! To be honest I have no idea. All I know is that none showed up, and I had to inform him that I previously had three lesions before he checked my history.
The recent MRI was only with contrast, but there wasn't anything on it. So there's no way to compare contrast vs non-contrast MRI.
I have been agonizing over trying to find out if old lesions should still show up with contrast or will it ONLY show active lesions . Will contrast MRIs only show active lesions and older ones will just look normal?
But then I can't fathom why he was so shocked or why he was then hesitant to start me on copaxone, which I had decided to start that day. I had been feeling quite unwell for the previous two months
The recent MRI was only with contrast, but there wasn't anything on it. So there's no way to compare contrast vs non-contrast MRI.
I have been agonizing over trying to find out if old lesions should still show up with contrast or will it ONLY show active lesions . Will contrast MRIs only show active lesions and older ones will just look normal?
But then I can't fathom why he was so shocked or why he was then hesitant to start me on copaxone, which I had decided to start that day. I had been feeling quite unwell for the previous two months
Are you sure they didn't mean that none showed up with the contrast? That would not mean the lesions have disappeared. It would just show none are active right now.
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