New and wondering
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New and wondering
I got an mri after pretty much demanding one from the doc.
The innocous symptoms i have been feeling for the 2 years have been:
Flashing lights when eyes are closed
"Vaseline" like vision
Elbow/arm weakness
Tingly/Itchy feet or hand
These symptoms never brought any suspicions up because they occurred so far and few between. It was when i started getting tension like headaches i was worried about brain cancer, but after reading ms seems more likely.
I am wondering does a mri with contrast make a difference? And if results come back normal i am mostly in the clear. I hear that 5% of those with ms have a clean mri. In the 2.3 million that have it, it means 115,000 were missed. Is it a good idea to get a follow up mri some months later?
I fit the criteria of those who would mainly have it:
N. European Decent
Woman
Age 20
The innocous symptoms i have been feeling for the 2 years have been:
Flashing lights when eyes are closed
"Vaseline" like vision
Elbow/arm weakness
Tingly/Itchy feet or hand
These symptoms never brought any suspicions up because they occurred so far and few between. It was when i started getting tension like headaches i was worried about brain cancer, but after reading ms seems more likely.
I am wondering does a mri with contrast make a difference? And if results come back normal i am mostly in the clear. I hear that 5% of those with ms have a clean mri. In the 2.3 million that have it, it means 115,000 were missed. Is it a good idea to get a follow up mri some months later?
I fit the criteria of those who would mainly have it:
N. European Decent
Woman
Age 20
- euphoniaa
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Re: New and wondering
Hi and welcome! You didn't mention whether you got MRIs of both your brain and cervical spine (C-spine), which are the main areas that MS lesions turn up in. It's possible to have lesions in one or the other, & sometimes also other areas of the spine since MS is a disease of the Central Nervous System.ShirleyTemple wrote:I got an mri after pretty much demanding one from the doc.
The innocous symptoms i have been feeling for the 2 years have been:
Flashing lights when eyes are closed
"Vaseline" like vision
Elbow/arm weakness
Tingly/Itchy feet or hand
These symptoms never brought any suspicions up because they occurred so far and few between. It was when i started getting tension like headaches i was worried about brain cancer, but after reading ms seems more likely.
I am wondering does a mri with contrast make a difference? And if results come back normal i am mostly in the clear. I hear that 5% of those with ms have a clean mri. In the 2.3 million that have it, it means 115,000 were missed. Is it a good idea to get a follow up mri some months later?
I fit the criteria of those who would mainly have it:
N. European Decent
Woman
Age 20
You're correct that a few are diagnosed without lesions showing on MRI -- early lesions may be too small to detect or something -- plus some lesions can come and go. So yes, a neurologist may schedule future followup MRIs just in case.
As for the contrast, it shows only whether lesions are ACTIVE or not, but lesions should show even without injecting you with the contrast medium. In my case, my brain was FULL of MS specific lesions on my first MRI -- without contrast. Subsequent MRIs with contrast over the next 10 years showed the same old lesions, which never went away and never enhanced.

As for symptoms: Keep in mind that every one of us seems to have a unique set of symptoms and history. I've had many symptoms that came & went over the last 40 years, but don't seem to be troubled by the most common ones: fatigue, heat, optic neuritis. MS is generally only diagnosed when OTHER problems are ruled out.
Be sure to check out the wealth of information throughout the many sub-forums on this whole site. And feel free to ask more questions. Also, keep in mind that many of us will chime in with our own unique perspectives and opinions as well, but we are NOT experts and medical professionals -- even if we sound like it.

Good luck and keep us posted!
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: New and wondering
Welcome to ThisIsMS, ShirleyTemple.
The advice from euphoniaa is very wise: work with your doctors.
The tingling/itchy feeling in your feet or hands is the definition of "peripheral neuropathy." This is a common symptom in many conditions. MS is only one of the possibilities, and the MS diagnosis is made only after the other more likely causes have been ruled out (just as euphoniaa has said). In investigating the cause of peripheral neuropathy, the University of Chicago suggests the following:
http://peripheralneuropathycenter.uchic ... #bloodtest\
Even celiac disease, or the related gluten sensitivity, can cause severe headaches. I have no medical background, but it is my opinion that you and your doctor have much work to do before settling on the diagnosis of MS. (By the way, request your own copy of any test results. And, when testing for B12 deficiency, do not take vitamin B supplements for at least two weeks before the tests.)
We wish you all the best.
The advice from euphoniaa is very wise: work with your doctors.
The tingling/itchy feeling in your feet or hands is the definition of "peripheral neuropathy." This is a common symptom in many conditions. MS is only one of the possibilities, and the MS diagnosis is made only after the other more likely causes have been ruled out (just as euphoniaa has said). In investigating the cause of peripheral neuropathy, the University of Chicago suggests the following:
http://peripheralneuropathycenter.uchic ... #bloodtest\
MRIs can supply useful information, but the blood tests listed above are much less expensive and offer information on more possibilities. Your GP can start this investigation by ordering these blood tests, beginning with a thorough screening for a possible vitamin B12 deficiency (The initial testing for B12 deficiency should include 4 tests: #1 a serum B12 test – or the newer, more reliable HoloTc test; #2 RBC folate test; #3 a serum homocysteine test; and #4 a methylmalonic acid test.). The "serum B12" alone is not adequate to find and confirm a deficiency.Blood tests
Blood tests are commonly employed to check for vitamin deficiencies, toxic elements and evidence of an abnormal immune response.
Depending on your individual situation, your doctor may request certain laboratory tests to identify potentially treatable causes for neuropathy. These include tests for:
Vitamin B12 and folate levels
Thyroid, liver and kidney functions
Vasculitis evaluation
Oral glucose tolerance test
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease
Lyme disease
HIV/AIDS
Hepatitis C and B
Even celiac disease, or the related gluten sensitivity, can cause severe headaches. I have no medical background, but it is my opinion that you and your doctor have much work to do before settling on the diagnosis of MS. (By the way, request your own copy of any test results. And, when testing for B12 deficiency, do not take vitamin B supplements for at least two weeks before the tests.)
We wish you all the best.
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Re: New and wondering
Oh i mean to clarify that i haven't gotten the MRI...yet. I got the referral for it. Which is why i'm scared of results when it's done.
And i got a CBC done yesterday, but idk if that shows up vit-d and b12 levels. I should be getting a call today. As for the b12, i remember having constant "eye twitching" in one eye for 4 weeks straight about a year ago that was driving me crazy and a friend told me to take b12 and within 2 days it completely went away! So i will be checking into those tests lynda :]
I am hopeful i am NOT diagnosed with ms. I see it's a very misunderstood disease that is easily manageable for some and debilitating for others. I pray for you all that there will be a cure, or something close enough it it. I AM going to find the cause of my "peripheral neauropathy", whether it be b12, ms or something else. I will keep you posted on the results. :]
And i got a CBC done yesterday, but idk if that shows up vit-d and b12 levels. I should be getting a call today. As for the b12, i remember having constant "eye twitching" in one eye for 4 weeks straight about a year ago that was driving me crazy and a friend told me to take b12 and within 2 days it completely went away! So i will be checking into those tests lynda :]
I am hopeful i am NOT diagnosed with ms. I see it's a very misunderstood disease that is easily manageable for some and debilitating for others. I pray for you all that there will be a cure, or something close enough it it. I AM going to find the cause of my "peripheral neauropathy", whether it be b12, ms or something else. I will keep you posted on the results. :]
- lyndacarol
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Re: New and wondering
The CBC (complete blood count) tests many things, but NOT for vitamin D and NOT for vitamin B12 levels – these tests must be specifically requested by your doctor. (And remember, the 4 tests I listed are needed to get an accurate picture of the B12 situation.)ShirleyTemple wrote:Oh i mean to clarify that i haven't gotten the MRI...yet. I got the referral for it. Which is why i'm scared of results when it's done.
And i got a CBC done yesterday, but idk if that shows up vit-d and b12 levels. I should be getting a call today. As for the b12, i remember having constant "eye twitching" in one eye for 4 weeks straight about a year ago that was driving me crazy and a friend told me to take b12 and within 2 days it completely went away! So i will be checking into those tests lynda :]
I am hopeful i am NOT diagnosed with ms. I see it's a very misunderstood disease that is easily manageable for some and debilitating for others. I pray for you all that there will be a cure, or something close enough it it. I AM going to find the cause of my "peripheral neauropathy", whether it be b12, ms or something else. I will keep you posted on the results. :]
I also hope that you are not diagnosed with MS. There are effective treatments for most of the other possible conditions that could be causing your symptoms. In my opinion (I have no medical background), there is no effective, approved treatment for MS.
We are interested to know how things go for you.
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Re: New and wondering
Mkay. Well I called the doc and he said my cbc was impeccable. Nothing out of range. He said my blood sugar was a bit high (130) but I wasn't fasting so he wasn't concerned (had a meal 15 prior). I am going to look into those b12 test. Though I cannot for the life of me find the HoloTc test, the serum homocysteine, or the methylmalonic test. All I see is the serum b12 + folate. Where do I find such test or what kind of doctor do I contact?
As for the MRI. It is going to be the 3T with contrast. Like others said, contrast isn't entirely needed but I'm also concerned about possible brain tumor, unlikely but I might as well rule that out too right?
Lastly I wanted to add that heat (such as baths) make the symptoms go away ironically. I love baths and frequently take me because of it. Just thought it was something else to share since many frequently say heat exaggerates it.
As for the MRI. It is going to be the 3T with contrast. Like others said, contrast isn't entirely needed but I'm also concerned about possible brain tumor, unlikely but I might as well rule that out too right?
Lastly I wanted to add that heat (such as baths) make the symptoms go away ironically. I love baths and frequently take me because of it. Just thought it was something else to share since many frequently say heat exaggerates it.
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Re: New and wondering
In my opinion, it is a good idea to request your own copy of any test results; then, you have them at home to refer to any time you wish (memory often fails us) AND it is not enough to hear "fine" or "normal" from the doctor. You need to have the actual numbers and reference ranges. For example, in your CBC, there is a line labeled MCV (mean corpuscular volume); if this number is at the high-end of the reference range, it may indicate that your red blood cells are enlarged. Do you have this information about the MCV?ShirleyTemple wrote:I called the doc and he said my cbc was impeccable. Nothing out of range. He said my blood sugar was a bit high (130) but I wasn't fasting so he wasn't concerned (had a meal 15 prior). I am going to look into those b12 test. Though I cannot for the life of me find the HoloTc test, the serum homocysteine, or the methylmalonic test. All I see is the serum b12 + folate. Where do I find such test or what kind of doctor do I contact?
As for the MRI. It is going to be the 3T with contrast. Like others said, contrast isn't entirely needed but I'm also concerned about possible brain tumor, unlikely but I might as well rule that out too right?
Lastly I wanted to add that heat (such as baths) make the symptoms go away ironically. I love baths and frequently take me because of it. Just thought it was something else to share since many frequently say heat exaggerates it.
The HoloTc test is fairly new in the US – it may not yet be available in your area.
As for the other tests needed for an accurate assessment of your B12 level… Any doctor can order them – start by asking your GP; if he feels uncomfortable in the area of B12 testing, ask for a referral to a hematologist.
A serum homocysteine (Hcy) test is commonly available. (In fact, the homocysteine test is considered more reliable than cholesterol testing in indicating the risk of heart disease. A high homocysteine level is associated with heart disease.)
The methylmalonic acid (MMA) test is available in 2 forms: a serum (blood) test or a urinary test (which many experts consider to be more accurate than the serum form).
I agree with you that a brain tumor is unlikely (but remember: I have no medical background). I would not be surprised if the MRI result was perfectly normal – even with on-going symptoms, my first 3 MRIs were judged to be normal. And even if lesions are found on your MRI scan, brain lesions are not conclusive proof of MS. Brain lesions are found with many conditions – just to name 2: migraine headaches and B12 deficiency.
Decades ago (long before MRIs and other tests were available) it was common to use a hot bath for the diagnosis of MS. Sitting in a hot bath worsens MS symptoms for most of us. Hot weather can do it too.
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Re: New and wondering
Lynda, when you say hot baths or exercise worsens symptoms, what do you mean? Does it happen after or during the activities?
Like for me, if my feet are really itchy, i will take a hot bath to alleviate it (my feet get REALLY cold for my entire life), then 2 hours later is comes back. Now i don't want to be stuck in a hot bath tub all day lol. But when i exercise i get tingly sensations DURING the activities.
Like for me, if my feet are really itchy, i will take a hot bath to alleviate it (my feet get REALLY cold for my entire life), then 2 hours later is comes back. Now i don't want to be stuck in a hot bath tub all day lol. But when i exercise i get tingly sensations DURING the activities.
- euphoniaa
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Re: New and wondering
Hello again. Here's a link to the National Multiple Sclerosis Society site where they address "Heat & Temperature Sensitivity in MS" and explain "The 'hot bath' test" which was apparently part of the MS diagnostic criteria before MRIs and other tests. http://www.nationalmssociety.org/Living ... #section-1ShirleyTemple wrote:Lynda, when you say hot baths or exercise worsens symptoms, what do you mean? Does it happen after or during the activities?
Like for me, if my feet are really itchy, i will take a hot bath to alleviate it (my feet get REALLY cold for my entire life), then 2 hours later is comes back. Now i don't want to be stuck in a hot bath tub all day lol. But when i exercise i get tingly sensations DURING the activities.
I suggest that you explore the wealth of information on the NMSS site, although one sad thing about MS is that no one actually has a complete understanding of it. Every one of us is unique, so they can only generalize with what seems most common among us -- not universal with everyone.The "hot bath" test
For many years, the “hot bath” test was used to diagnose MS. A person suspected of having MS was immersed in a hot tub of water. The appearance of neurologic symptoms or their worsening was taken as evidence the person had MS.
Heat has very little effect on me unless it's extreme.

Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: New and wondering
Got the MRI, and the results for the neuroradiologist who read it.
Technique:
MRI scanes of the brain using the GE 3.0 Tesla Cigna Scanner
Findings:
There is normal ventricular configuration. There are no masses or enhancing lesions. There is no signal abnormality within the brain. There is no evidence of hemorrhage. There is no region of restricted diffusion. There are normal flow voids in the major intracranial vessels. The acoustic canals and pituitary gland appear normal. There are no extra-fluid collections. There is a 6mm mucous retention cyst in the right sphenoid sinus.
Impression:
Normal MRI of the brain
6mm mucous retention cyst in the right sphenoid sinus
~~~
I am glad that my MRI came back clear, as many know a clean mri is not indicative of ms just as a "spotty" one is indicative of ms. I looked into what a mucous cyst is and it says they cause headaches and visual distrbances! So yay, maybe that is what was causing it. As for the peripheral neuropathy, i still don't know whats going on. Maybe it's the winter itch. Idk. What i do know is that i am going to get a Vit-test for b12 and see how my levels are.
And if the symptoms persist, i will get a follow up brain mri and spinal with V.E.P. That's if my symptoms come back at a later time.
So what do you all think?
Technique:
MRI scanes of the brain using the GE 3.0 Tesla Cigna Scanner
Findings:
There is normal ventricular configuration. There are no masses or enhancing lesions. There is no signal abnormality within the brain. There is no evidence of hemorrhage. There is no region of restricted diffusion. There are normal flow voids in the major intracranial vessels. The acoustic canals and pituitary gland appear normal. There are no extra-fluid collections. There is a 6mm mucous retention cyst in the right sphenoid sinus.
Impression:
Normal MRI of the brain
6mm mucous retention cyst in the right sphenoid sinus
~~~
I am glad that my MRI came back clear, as many know a clean mri is not indicative of ms just as a "spotty" one is indicative of ms. I looked into what a mucous cyst is and it says they cause headaches and visual distrbances! So yay, maybe that is what was causing it. As for the peripheral neuropathy, i still don't know whats going on. Maybe it's the winter itch. Idk. What i do know is that i am going to get a Vit-test for b12 and see how my levels are.
And if the symptoms persist, i will get a follow up brain mri and spinal with V.E.P. That's if my symptoms come back at a later time.
So what do you all think?
Re: New and wondering
It's good to hear that your MRI was clear. Regarding the mucus retention cyst, you may want to try using a sinus rinse such as one of these from NeilMed. http://www.target.com/p/neilmed-pharmac ... m=neil+med I've found it to be helpful whenever I feel a cold coming on. Once when I had a bad sinus infection, I used it every day for a week and it helped clear it up.ShirleyTemple wrote:There is a 6mm mucous retention cyst in the right sphenoid sinus.
Impression:
Normal MRI of the brain
6mm mucous retention cyst in the right sphenoid sinus
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Re: New and wondering
Okay. So while I am celebrating my good MRI results. Something odd and I think bad has shown up. My boyfriend, a photographer was taking practice head shots of me with his new lens. And my pupils are different sizes! Like one was a lot bigger. The left one (ironically the eye that didn't have problems)
He says not to worry about it. I then took multiple pictures with flash, and the eye now seems normal, but the left eye is still marginally larger. Maybe a mm or less. Idk
Crap. Now what? With the normal MRI, I'm afraid no one will listen to me.
Idk, if pics are allowed. I know on other forums. They are not. But i guess i might as well try.
http://s1351.photobucket.com/user/mikva ... g.html?o=0
He says not to worry about it. I then took multiple pictures with flash, and the eye now seems normal, but the left eye is still marginally larger. Maybe a mm or less. Idk
Crap. Now what? With the normal MRI, I'm afraid no one will listen to me.
Idk, if pics are allowed. I know on other forums. They are not. But i guess i might as well try.
http://s1351.photobucket.com/user/mikva ... g.html?o=0
Re: New and wondering
Images are fine as long as they're appropriate to the forum. You may wish to take a look at the Forums FAQ thread to learn more about the forums including how to post images. http://www.thisisms.com/forum/site-supp ... c5284.htmlShirleyTemple wrote:Idk, if pics are allowed. I know on other forums. They are not. But i guess i might as well try.