Aa
MS or Not?
Hi,
I will try and post this to the "Ask a Doctor" page, but it always seems to say they have reached their quota for the day, so I though I'd reach out here for some insight...
I had an episode about six weeks ago where my left forearm felt weak and my left thumb and index finger were paralysed. I could not bend them, I could not touch the tip of my thumb to the other fingers on my left hand. I slowly regained use of thumb and forefinger over about two weeks, only some partial tingling in arm and hand remains, on and off.
A CT scan revealed a 1.5 cm ring-enhancing right posterior frontal lesion with oedema.
MRI results were as follows:
Technique: Axial FLAIR, T2, T1, T1 post contrast ; coronal T2 gradient, T1 post contrast ; DWI ; brainlab.
Report :
Previous imaging is not available for comparison
T1 hypointense, T2 hyperintense lesion within the white matter of the right precentral gyrus. This has surrounding white matter T2 hyperintensity consistent with vasogenic oedema has vivid rim enhancement. There are multiple other (approximately seven) smaller predominantly deep white matter lesions which demonstrate rim or nodular enhancement.
In addition there are multiple T2 hyperintense foci both within the deep and pericallosal white matter of the frontal, parietal, temporal and occipital lobes bilaterally without associated enhancement.
No brainstem or other posterior foss signal abnormality.
No Focus of haemorrhage.
No areas of restricted diffusion
No abnormal leptomeningeal enhancement
Visualised intracrantial flow voids are preserved.
The ventricular and sulcal pattern is normal for age with no evidence of hydrocephalus.
Comment:
Multiple white matter lesions, some of which are cystic, several of which are enhancing with associated vasogenic oedema.
Possibilities for the appearance include demyelination (atypical due to cystic appearance), atypical infection including TB and cysticercosis (in the correct demographic), and less likely multiple metastases.
Lack of DWI signal abnormality is atypical for pyogenic abscess.
A CT of chest/abdomen/pelvis found no primary malignant lesion.
Serology for TB indicated it was unlikely.
CSF report revealed slightly elevated protein (0.53) with a ref. range of 0.15-0.40
Oligoclonal IgG was detected only in CSF, and therefore is consistent with intrathecal synthesis. ( No numbers of bands are in the report, and I don't understand what this "consistency means")
I spent a week in hospital with numerous tests done to rule out fungal, viral, and bacterial infections as I travel extensively. All tests that have come back so far have been negative.
Visual Evoked Response test was normal.
Dilated ophthalmological exam was normal.
I have been diagnosed with Multiple Sclerosis, and have a couple of questions about this:
What other explanations could there be for lesions of a "cystic appearance atypical of demyelination?"
If I have so many “active” lesions, why don’t I have more noticeable symptoms? I have been fatigued, and a little slow on word recall lately.
Sorry for so many questions, but my onset of MS has not been “typical” (no episodes of eye or leg symptoms), and my lesion pattern suggests that if it is MS I’ve had it for some time - years even. Why haven’t I noticed?
I have an MRI of the spinal column and neck scheduled for this week.
I just want to be sure before I commit to Interferon treatment, as even the neurologist seems not quite sure, and I’m scared a piece of the puzzle is missing.
Any ideas?
I will try and post this to the "Ask a Doctor" page, but it always seems to say they have reached their quota for the day, so I though I'd reach out here for some insight...
I had an episode about six weeks ago where my left forearm felt weak and my left thumb and index finger were paralysed. I could not bend them, I could not touch the tip of my thumb to the other fingers on my left hand. I slowly regained use of thumb and forefinger over about two weeks, only some partial tingling in arm and hand remains, on and off.
A CT scan revealed a 1.5 cm ring-enhancing right posterior frontal lesion with oedema.
MRI results were as follows:
Technique: Axial FLAIR, T2, T1, T1 post contrast ; coronal T2 gradient, T1 post contrast ; DWI ; brainlab.
Report :
Previous imaging is not available for comparison
T1 hypointense, T2 hyperintense lesion within the white matter of the right precentral gyrus. This has surrounding white matter T2 hyperintensity consistent with vasogenic oedema has vivid rim enhancement. There are multiple other (approximately seven) smaller predominantly deep white matter lesions which demonstrate rim or nodular enhancement.
In addition there are multiple T2 hyperintense foci both within the deep and pericallosal white matter of the frontal, parietal, temporal and occipital lobes bilaterally without associated enhancement.
No brainstem or other posterior foss signal abnormality.
No Focus of haemorrhage.
No areas of restricted diffusion
No abnormal leptomeningeal enhancement
Visualised intracrantial flow voids are preserved.
The ventricular and sulcal pattern is normal for age with no evidence of hydrocephalus.
Comment:
Multiple white matter lesions, some of which are cystic, several of which are enhancing with associated vasogenic oedema.
Possibilities for the appearance include demyelination (atypical due to cystic appearance), atypical infection including TB and cysticercosis (in the correct demographic), and less likely multiple metastases.
Lack of DWI signal abnormality is atypical for pyogenic abscess.
A CT of chest/abdomen/pelvis found no primary malignant lesion.
Serology for TB indicated it was unlikely.
CSF report revealed slightly elevated protein (0.53) with a ref. range of 0.15-0.40
Oligoclonal IgG was detected only in CSF, and therefore is consistent with intrathecal synthesis. ( No numbers of bands are in the report, and I don't understand what this "consistency means")
I spent a week in hospital with numerous tests done to rule out fungal, viral, and bacterial infections as I travel extensively. All tests that have come back so far have been negative.
Visual Evoked Response test was normal.
Dilated ophthalmological exam was normal.
I have been diagnosed with Multiple Sclerosis, and have a couple of questions about this:
What other explanations could there be for lesions of a "cystic appearance atypical of demyelination?"
If I have so many “active” lesions, why don’t I have more noticeable symptoms? I have been fatigued, and a little slow on word recall lately.
Sorry for so many questions, but my onset of MS has not been “typical” (no episodes of eye or leg symptoms), and my lesion pattern suggests that if it is MS I’ve had it for some time - years even. Why haven’t I noticed?
I have an MRI of the spinal column and neck scheduled for this week.
I just want to be sure before I commit to Interferon treatment, as even the neurologist seems not quite sure, and I’m scared a piece of the puzzle is missing.
Any ideas?
Hey all,
Ta for your support. I finally have had a "breakthrough" appointment with one of Australia's leading neurologists who is also an MS researcher. He went through my MRI with me slowly, asked LOTS of questions, and concluded I have MS with 99.99% certainty. He also ordered a test for Lyme disease, more to put the doubt out of my mind than anything else I think. I now need to choose between Betaseron and Copaxone, so will be doing a lot of reading to help decide. He also said he thinks we are two years or so away from an effective oral treatment - he offered that I be part of his trial, but at this stage I think I'll go the "tried-and-true" path.
Ta for your support. I finally have had a "breakthrough" appointment with one of Australia's leading neurologists who is also an MS researcher. He went through my MRI with me slowly, asked LOTS of questions, and concluded I have MS with 99.99% certainty. He also ordered a test for Lyme disease, more to put the doubt out of my mind than anything else I think. I now need to choose between Betaseron and Copaxone, so will be doing a lot of reading to help decide. He also said he thinks we are two years or so away from an effective oral treatment - he offered that I be part of his trial, but at this stage I think I'll go the "tried-and-true" path.
You really have your ducks in a row! Congratulations on filtering through what must have been a huge amount of info about MS and arriving at a great set of questions. I'm sure you'll do well in managing whatever comes your way, including finding the precise doctor you need.
There's no predicting which DMD will be right for you, I'm sorry to say. I did all the research and decided on Copaxone, no question about it. I made a list of 4 good reasons why that was the right choice for me. I sure was wrong. Things went well for the first month or so, and then slowly the site reactions built, till I was a miserable itching, scratching, lump-ridden wreck. My neuro told me I had become violently allergic to it (hardly a breakthrough idea), and in due course I switched to Avonex, which I tolerate well, though have to medicate myself first to keep the flu-like symptoms at bay.
Just keep in mind that if you have RRMS, there are med choices. Nothing is written in stone, so you can always change meds if one doesn't work out.
Please let us know what happens. We're always glad to have more Aussie friends.
ess
There's no predicting which DMD will be right for you, I'm sorry to say. I did all the research and decided on Copaxone, no question about it. I made a list of 4 good reasons why that was the right choice for me. I sure was wrong. Things went well for the first month or so, and then slowly the site reactions built, till I was a miserable itching, scratching, lump-ridden wreck. My neuro told me I had become violently allergic to it (hardly a breakthrough idea), and in due course I switched to Avonex, which I tolerate well, though have to medicate myself first to keep the flu-like symptoms at bay.
Just keep in mind that if you have RRMS, there are med choices. Nothing is written in stone, so you can always change meds if one doesn't work out.
Please let us know what happens. We're always glad to have more Aussie friends.
ess
HI and Welcome to the MS Forum. Boy I can see why you have so many unanswered questions. Your list to the doctor is a good one. The last question about which DMD would be best for you, is really anyone's guess. The real question will depend on whether they doctor's feel that this is a relapsing/remitting form of MS. Most of the DMD's are designed to try and help those with a RR course.
Some of the Interferons can cause depression in suspectible individuals. This is important to watch out for. If you take an Interferon, you will need to have a blood test around every 6 months to check your liver enzymes. This is very important.
I know this is not necessary with Copaxone. You will also see which injection fits into your schedule. A just under the skin shot every day, like Copaxone, a shot every 3 days or the Interferons that usually require an intramuscular shot in the leg, once a week. Get all the information you can find on all these drugs to make an informed decision. Getting on a DMD as early as possible is in your best interest, as "Ess" says.
You seem very informed medically. You understand alot and that is in your favor. Their is power in knowledge.
We are all behind you, every step of the way. This is one heck of a group that is extremely loyal and filled with friendship, not only in MS, but anything MS may affect in yoru personal life with your family and friends. Please let us help. We care.
Stick with us and keep us updated. You are now a bona fide member of the best "club" on the Internet.
All the Best,
Heather
Some of the Interferons can cause depression in suspectible individuals. This is important to watch out for. If you take an Interferon, you will need to have a blood test around every 6 months to check your liver enzymes. This is very important.
I know this is not necessary with Copaxone. You will also see which injection fits into your schedule. A just under the skin shot every day, like Copaxone, a shot every 3 days or the Interferons that usually require an intramuscular shot in the leg, once a week. Get all the information you can find on all these drugs to make an informed decision. Getting on a DMD as early as possible is in your best interest, as "Ess" says.
You seem very informed medically. You understand alot and that is in your favor. Their is power in knowledge.
We are all behind you, every step of the way. This is one heck of a group that is extremely loyal and filled with friendship, not only in MS, but anything MS may affect in yoru personal life with your family and friends. Please let us help. We care.
Stick with us and keep us updated. You are now a bona fide member of the best "club" on the Internet.
All the Best,
Heather
Thanks a lot ess, for such a detailed response. I am actually in the process of seeing five neurologists, two of whom are MS specialists, and one who is an infectious diseases expert. I know it seems like a lot of opinions, but I need to find one who doesn't plan on retiring in the next few years - if it is MS (probable), I want someone who'll be along for the ride with me for a while!
I'm not sure if I was tested for Lymes Disease, even though I mentioned that I was on the Appalacian Trail in Pennsylvania some months ago. (I'm in Australia and perhaps they don't appreciate the significance of this here), so I will ask on my next appointment whether or not his has definitely been ruled out.
Here's my list of q's for the next appointments, I don't think I'm missing anything - but will be sure to bring up Lupus as well:
What other explanations could there be for lesions of a cystic appearance atypical of demyelination?
What other conditions cause demyelination and how were these diagnostically ruled out?
Are metastases still a possibility?
Was I tested for Lyme disease?
Was my vitamin B12 level tested?
How was the possibility of neurosarcoidosis eliminated diagnostically?
Has cysticerosis been definitely ruled out?
Which MS drug will be best tolerated by my body type in terms of injection?
I'm not sure if I was tested for Lymes Disease, even though I mentioned that I was on the Appalacian Trail in Pennsylvania some months ago. (I'm in Australia and perhaps they don't appreciate the significance of this here), so I will ask on my next appointment whether or not his has definitely been ruled out.
Here's my list of q's for the next appointments, I don't think I'm missing anything - but will be sure to bring up Lupus as well:
What other explanations could there be for lesions of a cystic appearance atypical of demyelination?
What other conditions cause demyelination and how were these diagnostically ruled out?
Are metastases still a possibility?
Was I tested for Lyme disease?
Was my vitamin B12 level tested?
How was the possibility of neurosarcoidosis eliminated diagnostically?
Has cysticerosis been definitely ruled out?
Which MS drug will be best tolerated by my body type in terms of injection?
Hi, Assemblage, and welcome;
It seems you are very organized in your quest to be sure what is going on with your body. Absolutely continue to keep all your medical records, test results and so on, for you own use and so other doctors can make copies of them.
You certainly have a very abnormal brain MRI. Some of the lesions mentioned are in places typical of MS, others aren't. You ask how this could be MS, considering your mild symptoms. The answer is that lesions on the brain very often are 'silent' rather than 'eloquent.' That's a good thing. We want to keep them silent, no matter what their cause.
The radiologist reading your brain MRI is suggesting 3 possible reasons for the abnormality.
**demyelination (he doesn't mention MS specifically but that would be the logical infence) of an abnormal appearance and thus not typical
**Some kind of atypical infection
**Small tumors that have broken off from a bigger one elsewhere.
That's all the radiologist knows about you. No other test results or impressions to go from
Then the neuro takes over. Yours apparently has agreed that all 3 of the radiologist's suggestions should be investigated. That's why you had that extensive CT scan, looking for a primary tumor. Luckily, none was found. He also seems to have ruled out a TB infection, as well as mnay other infectious possibilities. Good. I too am unsure about your LP results, and will look up intrathecial synthesis, but in any event your LP was not normal. You mention several other tests that came out normal, especially the vision tests. That's fine. Many MSers but not all have vision issues.
Have you had thyroid tests, or a Lyme disease check? These need to be ruled out. Also, a number of possible MSers turn out to have other diseases with similar symptoms, including lupus and fibromyalgia. You don't mention these, but possibly your've had the tests.
Your neuro's final conclusion seems to be that you have MS, presumably by a process of elimination that includes his findings on neurological exam. Did he remark that any of his tests (strength sensation, balance, etc) were abnormal?
I'm not sure whether you've gone through this whole mental process on your own. Very possibly you have, but there are other readers here who might be in your position, so it doesn't hurt to restate things.
If you feel you have had all possible MS tests, yet still hesitate to start on medication, then I suggest taking all your test results to another neuro for an evaluation and another neurological exam. In any case, if it seems that MS has been proven beyond a reasonable doubt, make sure your doctor is a MS specialist. Neurology is a big field.
I do understand that what you thought was some minor disorder has now grown into a life-altering monster. Most often the members here have the opposite experience of many disturbing symptoms yet lack of treatment. It's good for us to meet more of you for whom MS was just sprung on unawares.
One final thing--Once you are satisfied as to diagnosis, please do start one of the disease modifying meds. They can make a lot of difference. We have complete info on these and a great many other topics in our Health Pages v(click at upper right).
Good luck to you. And let us know how your next MRIs turn out.
ess
It seems you are very organized in your quest to be sure what is going on with your body. Absolutely continue to keep all your medical records, test results and so on, for you own use and so other doctors can make copies of them.
You certainly have a very abnormal brain MRI. Some of the lesions mentioned are in places typical of MS, others aren't. You ask how this could be MS, considering your mild symptoms. The answer is that lesions on the brain very often are 'silent' rather than 'eloquent.' That's a good thing. We want to keep them silent, no matter what their cause.
The radiologist reading your brain MRI is suggesting 3 possible reasons for the abnormality.
**demyelination (he doesn't mention MS specifically but that would be the logical infence) of an abnormal appearance and thus not typical
**Some kind of atypical infection
**Small tumors that have broken off from a bigger one elsewhere.
That's all the radiologist knows about you. No other test results or impressions to go from
Then the neuro takes over. Yours apparently has agreed that all 3 of the radiologist's suggestions should be investigated. That's why you had that extensive CT scan, looking for a primary tumor. Luckily, none was found. He also seems to have ruled out a TB infection, as well as mnay other infectious possibilities. Good. I too am unsure about your LP results, and will look up intrathecial synthesis, but in any event your LP was not normal. You mention several other tests that came out normal, especially the vision tests. That's fine. Many MSers but not all have vision issues.
Have you had thyroid tests, or a Lyme disease check? These need to be ruled out. Also, a number of possible MSers turn out to have other diseases with similar symptoms, including lupus and fibromyalgia. You don't mention these, but possibly your've had the tests.
Your neuro's final conclusion seems to be that you have MS, presumably by a process of elimination that includes his findings on neurological exam. Did he remark that any of his tests (strength sensation, balance, etc) were abnormal?
I'm not sure whether you've gone through this whole mental process on your own. Very possibly you have, but there are other readers here who might be in your position, so it doesn't hurt to restate things.
If you feel you have had all possible MS tests, yet still hesitate to start on medication, then I suggest taking all your test results to another neuro for an evaluation and another neurological exam. In any case, if it seems that MS has been proven beyond a reasonable doubt, make sure your doctor is a MS specialist. Neurology is a big field.
I do understand that what you thought was some minor disorder has now grown into a life-altering monster. Most often the members here have the opposite experience of many disturbing symptoms yet lack of treatment. It's good for us to meet more of you for whom MS was just sprung on unawares.
One final thing--Once you are satisfied as to diagnosis, please do start one of the disease modifying meds. They can make a lot of difference. We have complete info on these and a great many other topics in our Health Pages v(click at upper right).
Good luck to you. And let us know how your next MRIs turn out.
ess
I have MRI of spine tomorrow, then appointments with two different neuros next week to discuss all the results and treatment options.... looking forward to some definite answers :)
Welcome to a good place to ask questions. I'm sorry to hear you have been diagnosed with MS, but please know it is a very treatable disease.
My symptoms, like yours, are very mild, and don't cause me much problems yet. That is the purpose of the DMD's - to slow or halt the progression.
Right now I have lots of brain and cervical lesions, some enhancing, as well as black holes, and most of them are not eloquent - they are not speaking out in ways that my body hears (yet). I keep using the word YET, because I believe in my case I will worsen if I don't start drugs soon.
You lab results sound a lot like mine ....
I hope you will read a lot here and learn all you can aboout MS. Once you have the knowledge you will be so much better at figuring out what you want to do next.
When do you see your neuro to discuss all of this?
Stay in touch,
Lulu
My symptoms, like yours, are very mild, and don't cause me much problems yet. That is the purpose of the DMD's - to slow or halt the progression.
Right now I have lots of brain and cervical lesions, some enhancing, as well as black holes, and most of them are not eloquent - they are not speaking out in ways that my body hears (yet). I keep using the word YET, because I believe in my case I will worsen if I don't start drugs soon.
You lab results sound a lot like mine ....
I hope you will read a lot here and learn all you can aboout MS. Once you have the knowledge you will be so much better at figuring out what you want to do next.
When do you see your neuro to discuss all of this?
Stay in touch,
Lulu
when do you see the Neuro for your results...sorry, I couldn't read your whole post...my eyes aren't doing so well today and if the post is long...it blurs ...
Have you seen your Neuro for results??
have they mentioned MS?
let us know..
wobbly
undx
Have you seen your Neuro for results??
have they mentioned MS?
let us know..
wobbly
undx
Thanks Jules .. Limbo Land is a weird place to be, isn't it? The more I google the more confused I become :)
Welcome, this is a good place for support. If you haven't already looked, you may find the Health Pages in the top right to be very useful. There are topics on explaining tests and on "Lesions vs Symptoms". If you are dx then many will concur that you should be on a DMD (disease modifying drugs). The purpose of the drugs are to slow down the progression of the disease. Even if you have no symptoms MS is continuing. The brain is very large and your MS may never affect an area you notice, then again it might.
Others will be along to offer more advice and insight. I'm still in Limbo Land and others with a confirmed dx can offer more advice.
Others will be along to offer more advice and insight. I'm still in Limbo Land and others with a confirmed dx can offer more advice.
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