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MS Conundrum
I've been thinking about MS and how the whole thing seems like one big conundrum.
Here's my scenario.
One morning experience tingling in my calves and feet. Initially I'm not concerned. After a day or two I decide to Google the symptoms. Oh my God. Every hit refers to MS. But what is MS? I Google MS. Oh my God, MS is not a good thing to have.
So I make an appointment with my Dr. and get an MRI done. MRI is clear. Good. Well not necessarily as 5% of people with MS have a clear MRI. Oh my God once more.
After many other tests, my Neurologist says everything looks normal. That's good isn't it? Well maybe. Or maybe not.
And here seems to be the problem. My symptoms haven't really subsided. Many potential causes have been ruled out. Except of course MS. Because there is no conclusive test to rule out MS. Now every tingle, itch or ache I get I worry if it is MS. Try Googling any symptom. The likelihood is that someone out the with MS has those symptoms.
So I feel like I'm on this non-stop roller coaster ride of uncertainty. Can't say it is MS, but can't say it's not MS. It's like once you start on this journey, you are on it until you are diagnosed, or you die of old age. Because even if the symptoms go away, there's no guarantee they won't be back in a year, or 10.
So is it me? Or is this enough to drive anybody stark raving mad?
Here's my scenario.
One morning experience tingling in my calves and feet. Initially I'm not concerned. After a day or two I decide to Google the symptoms. Oh my God. Every hit refers to MS. But what is MS? I Google MS. Oh my God, MS is not a good thing to have.
So I make an appointment with my Dr. and get an MRI done. MRI is clear. Good. Well not necessarily as 5% of people with MS have a clear MRI. Oh my God once more.
After many other tests, my Neurologist says everything looks normal. That's good isn't it? Well maybe. Or maybe not.
And here seems to be the problem. My symptoms haven't really subsided. Many potential causes have been ruled out. Except of course MS. Because there is no conclusive test to rule out MS. Now every tingle, itch or ache I get I worry if it is MS. Try Googling any symptom. The likelihood is that someone out the with MS has those symptoms.
So I feel like I'm on this non-stop roller coaster ride of uncertainty. Can't say it is MS, but can't say it's not MS. It's like once you start on this journey, you are on it until you are diagnosed, or you die of old age. Because even if the symptoms go away, there's no guarantee they won't be back in a year, or 10.
So is it me? Or is this enough to drive anybody stark raving mad?
Hi,
I have to laugh because I can relate. I spent most of the last year feeling the same way. Every little tingle or twitch had me worried and if my leg fell asleep I would be terrified. I was diagnosed with MS June 2011 and looking back can now recognize small symptoms years prior. I decided no drugs...a gluten and dairy free diet, no artifical colors or flavorings, no chemicals or sugars...just clean eating, exercise and reducing stress. This all stopped and reversed my symptoms but mentally letting go of the fear has freed me. So, I am now labeled with MS but I am happier and healthier than I have ever been! Don't focus on what could be...take control of what is and live your life!!
I have to laugh because I can relate. I spent most of the last year feeling the same way. Every little tingle or twitch had me worried and if my leg fell asleep I would be terrified. I was diagnosed with MS June 2011 and looking back can now recognize small symptoms years prior. I decided no drugs...a gluten and dairy free diet, no artifical colors or flavorings, no chemicals or sugars...just clean eating, exercise and reducing stress. This all stopped and reversed my symptoms but mentally letting go of the fear has freed me. So, I am now labeled with MS but I am happier and healthier than I have ever been! Don't focus on what could be...take control of what is and live your life!!
While I had these close at had, I figured I'd turn it into a health page so folks would have a place to go get a copy.
Bob
Bob
Thanks COBOB
As usual you seem to have the facts close to hand.
Both my MRI's were closed, and I think were 3T. The first was of the Brain, and the second was C & T. As I said, both were clear, but I don't know anything about the protocol or report. The fact that they were both clear gives me comfort. I was hoping for another in the hope that it would also be clear. Maybe that would help convince me that it may not be MS.
At the moment I'm feeling like I may be my worse enemy. My Dr. has prescribed me with anti depressants, but it's still too early to tell if they are having any effect.
I read another post of yours where you say you used to be active before your symptoms. I used to do triathlons and was training for a half iron man when my symptoms hit. I still try to run, but I've been getting pain in the ball of one foot and aching in various other areas of the foot. I haven't done any running for over a month now because of this. I don't suffer with fatigue though. At least not yet anyway. I'm still fine with swimming and cycling, but just not running, because of the impact on my feet when running.
I used to dream of being rich and successful. Now all I want to do is return to my old training routine. My oldest son is showing some real promise as a runner, and I want nothing more than to be able to go out running with him. Life really ***** right now.
Thanks again
John
As usual you seem to have the facts close to hand.
Both my MRI's were closed, and I think were 3T. The first was of the Brain, and the second was C & T. As I said, both were clear, but I don't know anything about the protocol or report. The fact that they were both clear gives me comfort. I was hoping for another in the hope that it would also be clear. Maybe that would help convince me that it may not be MS.
At the moment I'm feeling like I may be my worse enemy. My Dr. has prescribed me with anti depressants, but it's still too early to tell if they are having any effect.
I read another post of yours where you say you used to be active before your symptoms. I used to do triathlons and was training for a half iron man when my symptoms hit. I still try to run, but I've been getting pain in the ball of one foot and aching in various other areas of the foot. I haven't done any running for over a month now because of this. I don't suffer with fatigue though. At least not yet anyway. I'm still fine with swimming and cycling, but just not running, because of the impact on my feet when running.
I used to dream of being rich and successful. Now all I want to do is return to my old training routine. My oldest son is showing some real promise as a runner, and I want nothing more than to be able to go out running with him. Life really ***** right now.
Thanks again
John
As far as the MRI MS Protocol some Image Centers are using the 2003 protocol. While the current protocol has removed the magnet strength, try to get the MRI done on a 3.0 Tesla MRI unit. If you are prone to movement, get your Dr. to prescribe Valium or Lorazepam so you reduce the movement artifact. Here is a copy of the 2009 (latest) protocol:
Consortium of MS Centers MRI Protocol for the Diagnosis and Followup of MS
2009 REVISED GUIDELINES
I. REVISED CLINICAL GUIDELINES for Brain and Spinal Cord MRI in MS
For Patients with a Clinically Isolated Syndrome (CIS) and suspected MS:
Recommendations for the Baseline evaluation:
• A Brain MRI with gadolinium
• A Spinal Cord MRI if there is persisting uncertainty about the diagnosis and/or the findings on Brain MRI are equivocal.
• A Spinal Cord MRI if presenting symptoms or signs are at the level of the spinal
cord.
Recommendations for a follow-up evaluation:
• A Brain MRI with gadolinium to demonstrate new disease activity.
For Patients with an established diagnosis of MS:
Recommendations for the Baseline evaluation:
• A Brain MRI with gadolinium
A brain MRI with gadolinium is recommended for the follow-up of MS patients:
• To evaluate an unexpected clinical worsening concerning for a secondary
diagnosis.
• For the re-assessment of the original diagnosis.
• For the re-assessment before starting or modifying therapy.
• To assess subclinical disease activity should be CONSIDERED every 1-2 years.
The exact frequency may vary depending on clinical course and other clinical
features.
A spinal cord MRI with gadolinium is recommended for the follow-up of MS patients
with clinical evidence of disease activity referable to the spinal cord and who do not have
MRI evidence of disease activity in the brain.
II. REVISED MRI PROTOCOLS for Brain and Spinal Cord MRI Requisition:
• Request the standardized brain and/or spinal cord protocol
• Indicate the clinical question being addressed.
• Provide relevant clinical history, physical findings, MS medications, date and place of
previous MRI if any.
Radiology Report:
Use standardized terminology
Description of findings:
• Lesion number, location, size, shape, character
• Whether MRI dissemination in space (DIS) criteria are met (avoid statements like
“McDonald diagnostic criteria met”).
• Whether MRI dissemination in time (DIT) criteria are met.
• Qualitative assessment of brain atrophy,overall T2 and T1 hypointense lesion burden
severity.
• Comparison with previous studies for new lesion activity and atrophy.
Interpretation (typical, atypical, or not MS) and differential diagnosis if appropriate.
Field Strength No specific recommendations on magnet size or strength.
Scans should be of good quality, with adequate signal noise ratio (SNR) and
resolution (in slice pixel resolution of < 1mm x 1mm)
Slice thickness and gap < 3mm, no gap for brain and spinal cord, except
< 4mm, no gap for axial spinal cord
Core Brain MRI Sequences
Sagittal FLAIR (FLuid Attenuated Inversion Recovery)
Axial FLAIR
Axial T2
Axial T1 pre and post gadolinium
Gadolinium Single dose 0.1 mmol/kg given over 30 seconds
Minimum 5 minute delay before obtaining post gadolinium T1
One of the other sequences (e.g. FLAIR, T2) can be acquired during the 5
min post gadolinium delay
Options for Brain MRI Axial proton density (PD)
3D IR prepared T1 gradient echo (1.0‐1.5mm thickness)
Brain MRI Scan
Prescription and Coverage
Whole brain coverage
Use subcallosal plane on sagittal localizer to prescribe the axial slices
Core Spinal Cord MRISequences
Cervical Cord coverage
Sagittal T2
Sagittal PD or STIR (Short Tau Inversion Recovery)
Sagittal T1
Options for Spinal CordMRI
Post Gadolinium T1
3D IR prepared T1 gradient echo (1.0‐1.5mm thickness)
Thoracic Cord and Conus coverage
Gadolinium does not need to be given for a spinal cord MRI if it follows a
contrast Brain MRI study.
Bob
Consortium of MS Centers MRI Protocol for the Diagnosis and Followup of MS
2009 REVISED GUIDELINES
I. REVISED CLINICAL GUIDELINES for Brain and Spinal Cord MRI in MS
For Patients with a Clinically Isolated Syndrome (CIS) and suspected MS:
Recommendations for the Baseline evaluation:
• A Brain MRI with gadolinium
• A Spinal Cord MRI if there is persisting uncertainty about the diagnosis and/or the findings on Brain MRI are equivocal.
• A Spinal Cord MRI if presenting symptoms or signs are at the level of the spinal
cord.
Recommendations for a follow-up evaluation:
• A Brain MRI with gadolinium to demonstrate new disease activity.
For Patients with an established diagnosis of MS:
Recommendations for the Baseline evaluation:
• A Brain MRI with gadolinium
A brain MRI with gadolinium is recommended for the follow-up of MS patients:
• To evaluate an unexpected clinical worsening concerning for a secondary
diagnosis.
• For the re-assessment of the original diagnosis.
• For the re-assessment before starting or modifying therapy.
• To assess subclinical disease activity should be CONSIDERED every 1-2 years.
The exact frequency may vary depending on clinical course and other clinical
features.
A spinal cord MRI with gadolinium is recommended for the follow-up of MS patients
with clinical evidence of disease activity referable to the spinal cord and who do not have
MRI evidence of disease activity in the brain.
II. REVISED MRI PROTOCOLS for Brain and Spinal Cord MRI Requisition:
• Request the standardized brain and/or spinal cord protocol
• Indicate the clinical question being addressed.
• Provide relevant clinical history, physical findings, MS medications, date and place of
previous MRI if any.
Radiology Report:
Use standardized terminology
Description of findings:
• Lesion number, location, size, shape, character
• Whether MRI dissemination in space (DIS) criteria are met (avoid statements like
“McDonald diagnostic criteria met”).
• Whether MRI dissemination in time (DIT) criteria are met.
• Qualitative assessment of brain atrophy,overall T2 and T1 hypointense lesion burden
severity.
• Comparison with previous studies for new lesion activity and atrophy.
Interpretation (typical, atypical, or not MS) and differential diagnosis if appropriate.
Field Strength No specific recommendations on magnet size or strength.
Scans should be of good quality, with adequate signal noise ratio (SNR) and
resolution (in slice pixel resolution of < 1mm x 1mm)
Slice thickness and gap < 3mm, no gap for brain and spinal cord, except
< 4mm, no gap for axial spinal cord
Core Brain MRI Sequences
Sagittal FLAIR (FLuid Attenuated Inversion Recovery)
Axial FLAIR
Axial T2
Axial T1 pre and post gadolinium
Gadolinium Single dose 0.1 mmol/kg given over 30 seconds
Minimum 5 minute delay before obtaining post gadolinium T1
One of the other sequences (e.g. FLAIR, T2) can be acquired during the 5
min post gadolinium delay
Options for Brain MRI Axial proton density (PD)
3D IR prepared T1 gradient echo (1.0‐1.5mm thickness)
Brain MRI Scan
Prescription and Coverage
Whole brain coverage
Use subcallosal plane on sagittal localizer to prescribe the axial slices
Core Spinal Cord MRISequences
Cervical Cord coverage
Sagittal T2
Sagittal PD or STIR (Short Tau Inversion Recovery)
Sagittal T1
Options for Spinal CordMRI
Post Gadolinium T1
3D IR prepared T1 gradient echo (1.0‐1.5mm thickness)
Thoracic Cord and Conus coverage
Gadolinium does not need to be given for a spinal cord MRI if it follows a
contrast Brain MRI study.
Bob
Thank you Mark for your wise words. Your point about telling as few people as possible is an interesting one. I think this is good advice, and not something I'd really considered before.
I've made a new appointment with my Neurologist for November. I intend to hand him my timeline and ask him to confirm whether the previous MRI's followed the MS protocol. I'm assuming they did, but can't be sure. I'm also going to ask for another MRI, since the previous was over 6 months ago. If I have to pay private for the MRI, then I will. I just need to get some answers. If I do have MS, I'd rather start treatment sooner in the hope it will be of some help.
My Neurologist has already said that another MRI at this stage would not be helpful. But since the last one was over 6 months ago, do I have the right to be more assertive about another MRI? Or should I wait until a year is up? Personally I don't want to wait. Any advice is very welcome.
Thank you all.
John
I've made a new appointment with my Neurologist for November. I intend to hand him my timeline and ask him to confirm whether the previous MRI's followed the MS protocol. I'm assuming they did, but can't be sure. I'm also going to ask for another MRI, since the previous was over 6 months ago. If I have to pay private for the MRI, then I will. I just need to get some answers. If I do have MS, I'd rather start treatment sooner in the hope it will be of some help.
My Neurologist has already said that another MRI at this stage would not be helpful. But since the last one was over 6 months ago, do I have the right to be more assertive about another MRI? Or should I wait until a year is up? Personally I don't want to wait. Any advice is very welcome.
Thank you all.
John
Sorry you are experiencing these symptoms and MS is a possibility.
The great ?? thing about MS is even if everything points to it and you get a diagnosis, no one has any idea of how fast and far it will progress. Add new meds coming down the pike, and your prognosis could be excellent.
I've been living with a Dx for almost 11 years, the only real advice I can offer is to live every day as fully as you can, don't let the potential effects of whatever you have overtake your life.
Tell as few people as possible - spouse, your children in their teens or older, and only your dearest friends who don't gossip. As soon as you tell someone ignorant of MS you have it, they expect you to become paralyzed in a week, a vegetable within a year. The reality is far different as you may have read.
In case you have MS or some other lousy disease, make sure you document for your dr.s every lousy symptom that befalls you. Someday you may need to apply for Social Security Disability Income and or claim Long Term Disability, in which cases a 500 page record filled with "can't do's" and fatigue, and ... will make possible sufficient income to keep you from poverty.
Live and love fully, we are all on a road that ends, in the meantime do your best to fulfill your dreams.
Mark
The great ?? thing about MS is even if everything points to it and you get a diagnosis, no one has any idea of how fast and far it will progress. Add new meds coming down the pike, and your prognosis could be excellent.
I've been living with a Dx for almost 11 years, the only real advice I can offer is to live every day as fully as you can, don't let the potential effects of whatever you have overtake your life.
Tell as few people as possible - spouse, your children in their teens or older, and only your dearest friends who don't gossip. As soon as you tell someone ignorant of MS you have it, they expect you to become paralyzed in a week, a vegetable within a year. The reality is far different as you may have read.
In case you have MS or some other lousy disease, make sure you document for your dr.s every lousy symptom that befalls you. Someday you may need to apply for Social Security Disability Income and or claim Long Term Disability, in which cases a 500 page record filled with "can't do's" and fatigue, and ... will make possible sufficient income to keep you from poverty.
Live and love fully, we are all on a road that ends, in the meantime do your best to fulfill your dreams.
Mark
There is a worse case. Normal Lumbar Puncture. One lesion on a 1.5 Tesla MRI. "Buzzing and Burning" in the Left arm and hand for over two years. Buzzing and burning in the feet for a year spasticity in both legs. Optic Neuritis Right eye x 1. Trigeminal neuralgia Right side. Then Left side. Dr. says "Yep, you have a demyelinating disease. Guess we will play wait and see."
Plan: Wait and see. Second MRI on a 3.0 Tesla in a few weeks.
Bob
Plan: Wait and see. Second MRI on a 3.0 Tesla in a few weeks.
Bob
Hi Lulu
I sincerely hope I don't have MS. But I am learning about it. Before I got my symptoms I didn't have the first idea about it. Now I know tons more.
I feel almost guilty wishing I don't have something that I know a lot you really great people live with everyday. The experience so far is scary, but also quite humbling too.
I sincerely hope I don't have MS. But I am learning about it. Before I got my symptoms I didn't have the first idea about it. Now I know tons more.
I feel almost guilty wishing I don't have something that I know a lot you really great people live with everyday. The experience so far is scary, but also quite humbling too.
Hi John, Jen'sreply made me laugh out loud (thanks, Jen.) .... she is right that Google is not necessarily our friend.
Those MS symptoms are kind of like the drug warning we get with everything we take - everything COULD cause nausea, constipation, diahrrea, headache, weight gain, weight loss, etc. etc etc.
Tingling, shocks, numbness, etc etc could be MS. but it could also be other things. A viral infection can leave residual damage to the nerves that take a while to heal. Perhapsy ou have something as simple as that? then again, maybe you do have MS but are in the very early stages, where you might stay forever.
It is frustrating to not have answers. It is near impossible to not drive yourself crazy now that you have considered the possibilities.
The best thing you can do is take the time to educate your self about MS - knowledge is power. The more you know, the less scary this is. If you don't have MS then you will know a lot about a disease that way too many people in the world have - the odds are good you will eventually meet someone who does have MS.
Hang in there - try to get on with living until the next time you have to deal with this.
be well, Lulu
Those MS symptoms are kind of like the drug warning we get with everything we take - everything COULD cause nausea, constipation, diahrrea, headache, weight gain, weight loss, etc. etc etc.
Tingling, shocks, numbness, etc etc could be MS. but it could also be other things. A viral infection can leave residual damage to the nerves that take a while to heal. Perhapsy ou have something as simple as that? then again, maybe you do have MS but are in the very early stages, where you might stay forever.
It is frustrating to not have answers. It is near impossible to not drive yourself crazy now that you have considered the possibilities.
The best thing you can do is take the time to educate your self about MS - knowledge is power. The more you know, the less scary this is. If you don't have MS then you will know a lot about a disease that way too many people in the world have - the odds are good you will eventually meet someone who does have MS.
Hang in there - try to get on with living until the next time you have to deal with this.
be well, Lulu
I agree. but the point I'm making is that you can have pretty much any symptom that is common to MS (there are a lot of them) and suddenly you are on the roller coaster ride of uncertainty.
I do believe the Internet is both a blessing and a curse when it comes to self-diagnosis. On the one hand it put's us in touch with truly excellent resources such as this forum. On the other hand, if the Internet didn't exist, I'd be a happy go lucky guy with some mildly annoying tingling sensations. As it is, I'm driving myself crazy with the uncertainty.
I do believe the Internet is both a blessing and a curse when it comes to self-diagnosis. On the one hand it put's us in touch with truly excellent resources such as this forum. On the other hand, if the Internet didn't exist, I'd be a happy go lucky guy with some mildly annoying tingling sensations. As it is, I'm driving myself crazy with the uncertainty.
Ah, first step is to stop Googling your symptoms!
You know one possible cause of tingling. There are several others, and it's time to investigate with your neuro what they might be.
You know one possible cause of tingling. There are several others, and it's time to investigate with your neuro what they might be.
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