Newbie with some questions.

[Nickiesworld]

First, hello all! I'm very happy to be here! I found Medhelp through my Google questions, and found more information here than the two other forums that I belong to, and they're specifically for MS. Quix is the woman who inspired me the most, and I finally joined to start blogging my every day activities, so I can always go back and read them and smile, because my memory isn't the best.

My profile and blogs are open for all to read, and I'm hoping to meet some wonderful friends here that can relate to my life. To tell you a little about my situation, I started getting sick at the age of 14, diagnosed with Fibro at 23 which I always doubted, and now I'm 37 with a probable diagnosis of MS (shown on brain MRI). I have been home and on disability since 1999.

I got a script to go get the Visual EP, BAEP and SSEP, and a C-spine MRI. If one lesion is found on my c-spine, my neuro told me that will be our definite answer. But at this very moment, a past MRI is being compared to the most recent, and that could be very telling as well. The wait is awful, even though I might find out by this afternoon, or Monday at the latest.

I've been told that MS lesions aren't found in the juxtacortical area of the brain, but I found that isn't true at all. And about the Visual EP, BAEP and SSEP tests? I was told they won't tell if I have MS or not, when another person told me different. Opinions on that?

I'd also like to know if the pins and needles that are being felt is what people call numbness, or even partial numbness. I read so many different opinions on this, but I think being here on Medhelp is where I'll find most of the correct answers, as I have in the past couple weeks. If I am diagnosed, I'll be that percentage of people that had a negative spinal tap.

Thank you for reading! :)

[Nickiesworld]

Sorry I missed this, Quix. I had to run away for a while. Sigh. So much has been going on, and I wouldn't even know where to begin. I will say this, I have an appt with an MS Specialist on the 22nd of Dec, but with my history with doctors, I still feel as though I'll be ignored again.

Here are the MRI's below at age 30 and 35, and the age 37 one is posted above:

MRI of the brain without contrast due to chronic headaches and pain in eyes- Age 30 impression: Very tiny punctuate area of white matter hyperintensity in the left frontal region which is non-specific. There are some prominent CSF (Virchow-Robin) spaces but I see no cortical infarct. I see no evidence of acute intracranial event.

MRI of the brain with and without contrast to check for MS - Age 35 impression: No acute enhancing demyelinating foci. There are a few scattered tiny white matter foci of increased signal intensity on FLAIR and T2-weighted sequences mainly stable from 2003. Interval development of 2 non-acute non-enhancing white matter foci are seen in the frontal lobe regions.

[Quixotic1]

Nickie, your neuro is D.U.M.B.   You need to run away fast!  If you have to see him again the way to get the right info to him (with regard to the juxtacortical lesions) is to say:

"I have a family friend who is a doctor.  (That would be me.  Your family likels me okay, don't they?)  She has MS.  (I do)  She said that the juxtacortical lesions are so important that they are specifically used by the McDonald Criteria and she sent me these articles."

Then give him the three articles we both found.

Now, I have a grievance also with this radiologist who feels that at age 40, Ischemic Small Vessel Disease is more likely than MS.  Give me a break!  He should also recognize the importance of the juxtacortical lesions!  40 is WELL WITHIN the age group of common MS diagnosis!  DOESN'T ANYONE KNOW ANYTHING??!!

I forgot what your MRI at age 30 showed.  In terms of stability, if all these lesions were of vascular origin they would be unchanging.  Lesions from demyelination can grow, disappear and remain the same.  So, in general, the MRIs of MS are less stable.

We have found that the reports on our MRIs are often not complete with regard to number, location, size, and change from earlier MRIs.  They get paid hundreds of $$ to read them, but it often seems like we do not get our money's worth.  My reports always mention the absence of black holes and the absence of gray matter lesions - both are important "negatives".

Your anger is righteous!

Quix

[Nickiesworld]

I have to give this a bump, in hopes to get some opinions. The addendum is in, and since my Neuro is a bit of an idiot and I need to get to an MS specialist, I'm going to write what the report says below.

Addendum: Previous outside examination from January 28, 2008 is now presented for comparison.

Comparing axial FLAIR and T2 weighted imaging, the small white matter lesions seen predominately within the frontal lobes are not significantly changed. Overall there does not appear to be any significant change compared to the previous examination. Once again, these numerous white matter lesions are nonspecific in appearance with an unchanged differential diagnosis from this original report. If there is concern for demyelinating disease, additional imaging of the spine may provide additional information.

====================================================

MRI of the brain with and without contrast to check for MS - Now, age 37 findings (more detail): There are numerous small white matter lesions scattered within the supratentorial brain parenchyma. These are all less than 5mm without mass or abnormal enhancement. There is no abnormal diffusion signal. The white matter lesions are peripherally located in the juxtacortical white matter.

Impression: There are numerous small white matter lesions scattered within the supratentorial brain parenchyma, predominantly in the juxtacortical white matter with no mass effect or abnormal enhancement. These are nonspecific and differential considerations for a patient this age would include sequela of chronic infectious or inflammatory process, collagen vascular diseases, or less likely demyelinating disease. Follow-up examination in 3 to 6 months would confirm stability of these lesions. Neurologic consultation is recommended.

My thoughts and questions: I'm wondering why the radiologist didn't bring up the lesions within the frontal lobes in the recent MRI findings, yet once he gets the 2008 CD to compare, he says they're not significantly changed. Shouldn't they have been mentioned on my recent MRI just because they ARE there?

And since they ARE there, how are the MS lesions suppose to change? Size, shape, scarring, black holes, other? Help! I'm suddenly confused!

If he would have seen the very first MRI from back when I was 30 years old (in originally post), would that have changed anything?

I'm being told by everyone that MS lesions are very common in the juxtacortical region and read it myself and there are NUMEROUS, yet my Neuro says they're not common in that area. Again, I am angry!

[Karen99]

There are times to dumb yourself down as not to insult doctors, I suppose.   This is not one of those times.  :-)

[Quixotic1]

Yip, none of this is rocket surgery!

Quix

[Nickiesworld]

Quix, those links are exactly what I found on the web! You are just as brilliant as I am when it comes to doing your rearch! GMTA! I am so glad you confirmed this for me, and wish I could just hug you! Thank you, thank you, thank you!

I refuse to listen to people who tell me not to read my MRI's or try to educate myself on this disease!! I compared my juxtacortical lesions seen on my disk to Google images in the same area and they're dead on! I knew I had MS! I just knew it!

I will do exactly what you told me to do, and I'll go in there with my head held high! RAWR!

Thanks again!

Nickie

[Quixotic1]

I am concerned that this serious misunderstanding might prevent a diagnosis.  Here is the National MS Society's pocket card that the print up and distribute to non-MS Specialists to aid in diagnosing MS:

Go to this site and scroll about halfway down the page to the link for "Pocket Card".

This card also lists the same criteria that I printed above showing that a "juxtacortical lesion" carries great weight in the MS diagnosis.

If you find that this is holding you back, you print off all of these medical pages and highlight the references to juxtacortical lesions and given them to her.  If she takes umbrage, she is not worth your time.  If she can learn, then you have a winner.

Quix

[Quixotic1]

Oh, Sheesh!!  The finding of a juxtacortical lesion is one of the criteria used in verifying a diagnosis of MS in the McDonald Criteria.  Look at this document.  Near the bottom of the third page there is a footnote after a table showing the "International MRI Criteria for MS Diagnosis"

3 out of 4 of the following on brain MRI:

-- 1 Gd-enhancing lesion or 9 T2 lesions

--  1 JUXTACORTICAL LESION

--  1 Infratentorial lesion

--  3 Peri-ventricular lesions

Uh,   duh!!  The presence of even ONE juxtacortical lesion carries the weight of 9 scattered T2 lesions.  Note to everyone reading.  All of these are NOT required for a diagnosis of MS.  This is part of a proposed paradigm for diagnosing MS on the basis of the MRI.

Here is another abstract that discusses using a new technique to distinguish the juxtacortical lesions in the MS brain:

"CONCLUSION: MR imaging with 3D DIR enables increased intracortical lesion detection in the multiple sclerosis brain, as well as improved distinction between juxtacortical and white matter–gray matter lesions. "

http://radiology.rsna.org/content/236/1/254.full

Here is a study from 2000 that shows that the juxta cortical lesion load correlates with Memory Dysfunction:

http://www.ajnr.org/cgi/content/abstract/20/10/1956

Now the nerves that are involved in the juxtacortical lesions are called "U-Fibers".  In this wonderful source, called The Radiology Assistant, it specifically states that U-Fiber Juxtacortical lesions are pretty specific for MS.  Just read the first large part of this page and you will see:

http://www.radiologyassistant.nl/en/4556dea65db62

I found plenty more, but got tired of copying and pasting.  Just google

multiple sclerosis juxtacortical lesions

and yoou will see that your neuro - AND the radiologist - has this piece of info bass-ackwards.  Juxtacortical lesions do not occur in small-vessel ischemic disease (like hypertention, migraines, and diabetes).

Quix

[Nickiesworld]

Thank you all so very much for stopping in to welcome me, as well as describing the pins and needles - sensations. To even get this many comments is a big shocker compared to the other forums I belong to, and I probably won't be going back again. I am moved to tears, and feel very blessed to be here.

Quix, I am quite embarrassment to say this, but my current Neuro is the one who said that MS lesions usually don't show up in the juxtacortical area. She told me this a few days ago, and I tried to tell her what info I've read (not to sound like a know-it-all), but you know how some doctors are - they don't wanna hear it, because only THEY KNOW what's right and what's true. I didn't argue the point and walked out with a probable MS diagnosis. Sigh.

I didn't hear back from the doctor today, which was a huge disappointment. I was told she'd be in the office today, and they were closed. I called Radiology to see if the comparison had been done, and they said they've been really busy. I made up some lie that I had plans to go to Florida for vacation so they'd get it done faster, and I need to know very soon, I said. "We'll do the best we can." I got.

You see, what happened is that I went to two different hospitals to get the MRI's. My latest one is from last Friday, and the other was from 2008. I had to bring in the old MRI CD for the radiologist to compare, which I did last Saturday, the day after. If I had gone to the same hospital for the MRI, I probably would have my answer by now.

Here are my MRI's below:

MRI of the brain without contrast due to chronic headaches and pain in eyes- Age 30 impression: Very tiny punctuate area of white matter hyperintensity in the left frontal region which is non-specific. There are some prominent CSF (Virchow-Robin) spaces but I see no cortical infarct. I see no evidence of acute intracranial event.

MRI of the brain with and without contrast to check for MS - Age 35 impression: No acute enhancing demyelinating foci. There are a few scattered tiny white matter foci of increased signal intensity on FLAIR and T2-weighted sequences mainly stable from 2003. Interval development of 2 non-acute non-enhancing white matter foci are seen in the frontal lobe regions.

MRI of the brain with and without contrast to check for MS - Now, age 37 findings (more detail): There are numerous small white matter lesions scattered within the supratentorial brain parenchyma. These are all less than 5mm without mass or abnormal enhancement. There is no abnormal diffusion signal. The white matter lesions are peripherally located in the juxtacortical white matter.

Impression: There are numerous small white matter lesions scattered within the supratentorial brain parenchyma, predominantly in the juxtacortical white matter with no mass effect or abnormal enhancement. These are nonspecific and differential considerations for a patient this age would include sequela of chronic infectious or inflammatory process, collagen vascular diseases, or less likely demyelinating disease. Follow-up examination in 3 to 6 months would confirm stability of these lesions. Neurologic consultation is recommended. (I'm guessing he's saying it's nonspecific because he hadn't read the past MRI or even know of it?)

Since nothing else showed in the spinal tap, such as infection, Lyme, etc, my guess if that I'm going to be diagnosed with MS, even though that didn't show up either. I feel it in my gut and have so many symptoms. Thoughts?

[Quixotic1]

They are right above.  If the evoked potential are positive it add weight to the diagnosis of MS.  If they are positive, it doesn't say much at all.

Q

[Quixotic1]

Hi, Nickie, someone gave you wrong information.  MS is one of the few diseases that actually cause juxtacortical lesions.  In fact, this position is one of the hallmarks of MS lesions in that area.  They are also seen in the subcortical area, but share that area with microvascular disease.  So, if you have juxtacortical lesions, you very likely have MS.

People who have tingling or "pins and needles" sensations often have reduced sensation in that area.  You can test this by having someone touch the area with a cotton wisp and then the same spot on the other sides.  Then do the test with something sharp like a pin.  If there is a difference in the two sides, for instance, the sharp feels more dull on the side with the paresthesia, then the sensation is reduced.

If a spinal lesion is found it adds weight to the diagnosis, but it is NOT required (as ess said) for a diagnosis of MS to be true.

I have to say that you should have your diagnosis by now. ??

Who has been sitting on the fence and why?

Quix

[essdipity]

Welcome to our MS forum! I'll try to help with some of your questions.

Pins and needles sensations are generally considered the same as tingling. This mostly depends on the way the patient describes them, and in any case these are not official medical terms. Abnormal sensations come from malfunctions of the sensory nerves sending information back to the brain. Numbness means nothing is being transmitted, and in-between sensations such as tingling suggest only partial transmission. Also, of course, downright wrong feelings can occur. For instance, burning on the skin when nothing is wrong. There are many other kinds of pareasthesias (abnormal sensations) as well. See our Health Pages for a lot of info on this.

Evoked potential tests will be abnormal only if lesions are slowing up nerve conduction *in the places being tested*. You can certainly have MS with normal EPs. It just depends on where your lesions are. Abnormal results make MS more likely, just as abnormal tests regarding strength or spasticity do. The neuro is supposed to put all results together in making a diagnosis. Lack of a spinal lesion detected on MRI is NOT a reason to rule out MS.

Hope this is at least a little help.

ess

[jensequitur]

When I get numbness, it's a total lack of sensation.  My fingertips on the left hand are numb to the touch, and I only get a little bit of temperature data.

[Zacksmomi]

Hello and welcome to the forum.  I am sorry you are in a position that caused you to seek out this group, but we are the greatest.

I do hope you get some results soon.  I wish I could answer your questions about the testing but my dx was based on symptoms and 2 MRIs so I didn't have to endure the testing many here have gone thru.

I would not say I call my pins and needles numbness. I ususlly call it tingling although that is probably a down play of how it really feels. I can feel my hands and feet most of the time although the temp is a bit off, but the tingling pain in my right hand and foot is something quite different.  

When I had my first attack my right hand did go almost completely numb along with the tingling. I describe the pain now as anywhere from mild pins and needles, to the stinging you feel when you plun your hand in a hot tub after being in a cold pool.

Others here will have different descriptions of their parasthesias, but that is how I describe the pins and needles.

Please keep us posted on your test results.

D