SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
MRI
About This Group:

This is a group for anyone who is currently living in limbo land with a neurological disorder but doesn't have a diagnosis. Many people are living with chronic and disabling neurological problems which mirror such diseases as multiple sclerosis, lupus, M.E., Fibromyalgia, Lymes disease, Vitimin D deficiency, Migraines, Parkinsons yet have no diagnosis and are left to literally struggle on alone. I have set up this group to help support people through their journey, whether its just for a moan, sharing a joke, experiences, advise on how to survive just plain anything. I know there are a lot of us out there. Anyone who feels lost, or needs to share or just wants a big hug please join, there will always be someone to give you support. OUR MOTTO IS: "we are still all in this together..no matter what point of our journey we are in...limbo, dx. or just joining...we are all here for a reason...to seek support, make a friend and find answers..."

Founded by MrsAristotle on October 2, 2009
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MRI

.I had another MRI in July and one the other day because in July a plaque showed up in the left parietal region and she wanted to give it three months. Anyone want to tell me what they think of this?

.i recently had an mri in june and now a follow up last week. can someone tell me what they feel about these findings.

Again seen are numerous T2-hyperintense foci in the cerebral white matter. There is also a prominent lesion, about 6-7 mm size, in the left basal ganglia area in or adjacent to the posterior limb of th einternal capsule. Of note, there are no periventricular lesions, and in the corpus callosum, only a single small lesion is noted along the far left lateral aspect of the anterior part of the corpus callosal body. Also, there are no visible lesions in the brainstem or cerebellum. Typical features of multiple sclerosis are lacking. Prominent perivascular spaces are noted in the left cerebral peduncle of the midbrain.


There is no pathologic enhancement in any area. There are no areas of restricted diffusion on DWI. The ventricles are normal. The major vascular flow voids are unremarkable. The orbits and paranasal sinuses are unremarkable.

Any ideas? I'm open to listen to anyone
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8 Comments
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1627868_tn?1333889942
Welcome!  I'm sorry that you are going through all this, but wanted to let you know you are in a great place.  Now, on to your questions...

I'm sorry, but I really have no idea what the above is saying.  I do understand that you bascially have lesions in different areas of your brain, but it sounds like the report is saying that they maybe aren't in the usual "hotspots" for MS.  That's not to say that they aren't caused by MS, but that it will take a really good neuro to diagnose you if that is what you have.  Also keep in mind, there are many diseases that mimic MS, as well as many diseases that can cause white matter lesions.  It does maybe sound like you may have a new area?  I am no doctor though, so I really am only speculating.  =)

Anyways, welcome again!  If you don't mind me asking, what kind of symptoms have you experienced?  Have you had any other tests done?
Take care,
Sarah
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956292_tn?1334058469
Hello,

I second what sarah said. There are alot of things that can cause lesions and a GOOD nuero can sort that out. ALONG with other tests and exams. Have you had any other exams, tests, bollodwork?

Welcome to our group. I know you will find comfort here knowing there are many here searching for answers to questions quite similar to yours.

Please stick around. It can sometimes get a little quiet around here on weekends BUT there are always someone who pops in....hang in there..

JibJen
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1475492_tn?1332887767
Hiya Missy,

Welcome to the forum. I am sorry you are here though, it means, like the rest of us that you are not feeling 100%. (hugs)

It also sounds like you have a pretty good doctor that is following you closely. That is a relief! I suspect you are getting a lot of tests done about now --- evoked potentials, EEG, EMG, NCS, blood work and hopefully some treatment for any symptoms you may have.

I'd also like to know what your symptoms are and how you came to get the MRI's? How long have you not been well?

We are here for you and will answer any of your questions. Hang in there. It does sound like you are in good care.
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418191_tn?1205199121
Hi -
I have lupus anticoagulant.  My blood work shows elevated liver enzymes; high cholesterol; high CRP.  My evoked visual was negative.  My present neurologist says that Boston will probably want to repeat the spinal tap (yeah).  
I feel pretty crappy.  My hands and wrists ache so bad if I use them too much that I could vomit; I am physically exhausted; ; I have sleep apnea; My feet and legs hurt; sometimes they feel like pins are jabbing into them; most days I'm constipated.  What other diseases mimic ms?  
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1760800_tn?1337789449
Hi-

There are many- Lymes, Lupus, Vitamin B-12 - Thryroid - and the list goes on - It is  crazy -  The Doctors have to rule out all of those and that will happen as they keep testing - I am in the middle of this process - have " area of abnormality" in brain, c and t spine  - in other words lesions that they are not calling lesions yet!  But other than leg issues do not have any other sx getting blood wprk and a spinal in the coming weeks Dr assures me by Christmas we will have answers - just started baclofen for spasticity -

Hang in there - keep asking questions and they will eventually get you some answers
And remember we are here when you need us!

:-))))
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418191_tn?1205199121
I have tested negative for lyme, lupus, vitamin B12, thyroid, RA.  

I hope to get some answers sometime soon as well.  

I've been hanging in there a very long time.

Thanks for writing.
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1760800_tn?1337789449
Oh I know it is frustrating as all ..... Having neuro issues is like looking for a needle in a haystack sometimes - there are some people that get a dx fast and then others like us who they search and search for answers  - it can make you crazy!  

Patience has never ever been a strong suit for me -  I always want answers and a plan yesterday   - being sick has taught me some patience that may be the only good thing to come of it - that and finding you all here!

Anyway have a good day!
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1475492_tn?1332887767
Have they checked you for EBV? I know EBV can wreak havoc on your system.

You can, unfortunately, have over-lapping auto-immune diseases.

Also, when they told you that you tested negative to lupus, since you have the Lupus anticoagulant, exactly how did they determine that? I am sure they realize you do not have all the titer's but did they tell you how many you have?

My Mom and sister are ANA positive. My Mom does not have lupus (yet) but she has an abnormally large amount of the titers. The doctor indicated to her that she has some 'sort' of connective tissue auto-immune disease but there are so many they may never know. My sister is suspected of having juvenile arthiritis. They both are in a wait and see pattern.
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