Seems I don't have MS

[GrannyKay]

I haven't heard from my neuro yet, but all my test results thus far point to me not having MS.

The MRI report showed enlarged ventricles and "bilateral hemispheric white matter foci of T2 hyperintensity involving subcortical and periventricular white matter" .... I have NO idea what that means! The impression was that the enlarged ventricles suggest "fixed or functional obstructing abnormality at the aqueduct level" and that the "nonspecific hemispheric white matter signal intensity pattern changes" are likely related to small vessel disease.

This morning I got the test result from the CSF and blood samples and there were no O bands present.

I can't find any information on the internet about enlarged ventricles or small vessel disease except in relation to elderly people and dementia/alzheimers. I'm only 46, so it seems odd that I would have these types of problems at this age, and I don't have high blood pressure or high cholesterol, both of which are apparently related to small vessel disease.

Thankfully the headache I've had since Friday is finally GONE other than a twinge here and there if I bend over or whatever. This is the first day I've been able to stay out of bed for more than 20 minutes. Going to work this afternoon, but plan on taking it as easy as I can.

Any thoughts or comments about my test results? Thank you all for your support through all of this.

[GrannyKay]

Thank you Sarah. I have found one doctor in the area that has good patient reviews and specializes in MS so I'm going to see if I can get in to see him. Ordering a cd copy of my MRI today. :)

[SarahL2491]

just to put my mind at ease, I'd also talk to an MS specialist, let them look at your MRI, not read the rad report, but actually look at the MRI

keep us posted, we all learn from each other.  You've gotten some super advice from many of our great forum members

[GrannyKay]

Thank you SO much! It clarifies a lot for me.

I'm doing a separate post, but I just got a call from the nurse saying they are sending me to a neurosurgeon with a dx of hydrocephalus. :(

I'm alarmed and terrified. Still absorbing the info.

Wondering if I should start looking for an MS specialist now or what. The surgeon's office is supposed to call me to schedule a consult.

[LilMinnie]

This is a very fascinating discussion!  I have learned a lot.  Thank you!

The Radiologist who read my brain MRI went into quite a bit of detail, and stated that there was no evidence of ischemia, hemorrhage, or mass.  He did refer to my "spot" as a focus and stated that it is in the right frontal lobe white matter, and that "...the lesion is also seen on..." and identified three images in which it was seen.  So, he did call it a lesion by name.  I was kind of proud of myself because I found it before I got the written report.  Of course, it was pretty obvious.  Later, my second neurolgist found another one.  My first neurologist said my brain MRI was normal...

It is frustrating that this stuff is so subjective and heavily depends on who reads it and what they're looking for.  My codes at the time were demyelinating disease of central nervous system unspecified (341.9) and Diplopia (368.2).

Thanks again for all the great posts and good luck, GrannyKay!

Hugs,
Minnie  :)

[essdipity]

Oh, sorry. White matter means the sheathing around the nerves that transmit nerve impulses. That's what gets demyelinating lesions in MS. The brain also has gray matter, which is also believed to be affected by MS, though there currently is no way to demonstrate this.

[essdipity]

The word 'foci' is just the plural of focus, and for MS purposes generally means the same as lesion. Radiologists seem to prefer focus, indicating a spot or area that stands out because it's different from the rest.

A lesion, in medicine, means something that shouldn't be there, so technically a lesion could be a tumor or something else besides demyelinating nerves. In MS, though, it refers to an area of demyelination.

ess

[essdipity]

Well, the several earlier neuros just relied on the radiology reports, which always mentioned some level of microvascular ischemia. I don't think they even looked at the actual MRIs.

I joined this forum in '07 and learned a huge amount, but the most important thing was to make sure the neuro is capable of reading MRIs himself/herself, and is confident in doing so.

Not many general neuros are in this category. There are literally hundreds of neurological diseases, some very rare, of course, and a general neuro very often can't keep up with all of them.

Among the characteristics of a good MS neuro is that he or she will refer to the radiology report only after doing a very thorough exam and and looking independently at the MRI. Sometimes (often, actually) a patient has to press, ask the tough questions and be the squeaky wheel to get the best health care.

ess

[GrannyKay]

Thank you to EVERYONE for your responses.

I've been trying to go through and respond to each one individually, but I keep losing my train of thought and forgetting what each one said without going back and reading it again and that is taking way too long! Cognitive issues?

Can someone tell me what the difference is between white matter and lesions and foci? When I look it up online it seems like white matter and lesions can be thought of the same way. It's all so confusing.

You all have been such a huge help.

[GrannyKay]

Thank you. So your neuro didn't see MS at the time but when you were able to go to a specialist he/she was able to see it?

I'm really hoping that my doctor is able to distinguish what is going on without me having to go to a specialist....but we shall see.

I don't even have another appointment scheduled as of yet. I'm assuming she's just waiting until all the tests results are in.

[GrannyKay]

Thank you, Poppy.

I used to suffer terribly from migraines. I would usually get the visual "warning" that one was coming where one eye would get this like flickering. Hard to explain, but the best way I could think of to describe it was like I was looking through a mostly clear kaleidoscope and it was very hard to see out of that eye. I would get these several times a month and then they gradually started tapering off. No tests were ever done, other than maybe some blood work, but I never had an MRI.

That was many years ago, but I don't know if it would still show up in my brain like that. It is interesting that they would consider small vessel disease in someone your age.

Thanks again for your feedback!

[BubblesRN74]

So glad your headache is better!  I took yesterday off because the pain was so bad on Sunday night, went to work today and am feeling better but still not 100%.  

I too received the results from my LP today and no O-bands in CSF...they did not mention my MRI results though so I am going to wait a few days before calling for those.  

While I am so glad the results where negative for this one test, I can't help but feel it makes me look even more crazy than I already feel :o/  

I hope you get some clarity for your MRI results.  

[eham05]

Hello-

My MRI report reads identical to yours (except the enlarges ventricle), and for the first six years of issues I was told "microvascular damage due to migraines." I do have a midline shift...curious what doc will say about that.

Now, over the past year I have had a development of new symptoms that can't be explained by microvascualr damage of my small size- one being sensioneural hearing issues. My recent MRI report reads that these "foci" don't include nor exclude MS, and my neuro pointed out that the lesion at the ventrical in particular is a red flag for MS. I go see him next week for a decision based on the MRI and EP testing.

Anyways, from what I have read through the years is that small vessel ischemia can affect at any age the same as MS can, however once a person crosses the line of symptoms no longer being able to be explained by SMI, then MS must be considered...where I am now. And I am 31- symptoms started at 24. In some studies certain people were dx'd with small vessel ischemia based on a single extreme episode of intense stress that left behind damage and enlarged spaces, but they did not develop a chronic condition of SVI. Think of it as a stretched out balloon of sorts.

I am not sure of your condition but I hope your apt is productive!

Such a waiting game we all go through...waiting to basically get worse to get answers. sheese... Hugs!!

[Poppy7402]

Another explanation for the hyperintensities on the MRI is migraines.  If you don't get them, then you still have to wonder about MS.

I'm only 39 and have these increased T2 thingies that were also put down to small vessel ischaemic disease because at the time I had the MRI, I didn't have enough 'other' symptoms for them to even bother mentioning MS.  Its only now that I have tons of other symptoms that MS is being mentioned and the fact the spots "might not" be small vessel disease.

Good luck

Poppy

[SarahL2491]

I was told they were age related to BEFORE I was diagnosed.

I agree with ess, you are too young for SVI.  

I also have a ZERO O-bands in my LP.

Radiologists?  Give me a penny for my thoughts on them.  Both of my MRI's say there is NO MS.........one even "touts" the MS Protocol and neuro and I both see them on both MRI's.  There are about 10 on the first one (I can't remember exact #) and 3 new ones on the 2nd mri.  They do generously call them foci.......ha ha

Wait til you have your neuro visit and ask him to go over the MRI with you and show you what he finds, good or bad.  That way you will know he has truly LOOKED at it and if he finds anything, perhaps he will point it out, but
act interested in learning!  They sometimes love that!

When do you see him/her?

hang in there!!!

[essdipity]

Hi, GrannyKay. I don't know what enlarged ventricles may mean, but I do know that lesions in the periventricular and subcortical white matter (where yours are) are in prime MS real estate. You are young to have small vessel ischemia, especially in the absence of the usual symptoms.

I was a good bit older than you when all this started for me, and for at least  5 or 6 MRIs the abnormalities shown were foisted off on ischemia. I too had no other indicators for that. It was only when I saw a good MS specialist at a major center that MS began to be pinned down. I've been diagnosed for some years now.

Radiologists are not diagnosticians. I hope you are being evaluated by a neuro who will not rely on the radiology report, but will delve deeper. BTW, my LP was normal too, and that happens quite a lot. If you look back a couple of weeks in these posts, you'll find a thread about this, and many members here with diagnosed MS had no o-bands.

Keep plugging and best of luck.

ess

[GrannyKay]

Thank you Kat.

I haven't had any gait problems or incontinence issues, but I have had some cognitive issues (memory seems poorer) and vertigo.

I know what you mean about the amazing results from the spinal tap with hydrocephalus ... my son had brain surgery to remove a benign tumor and developed hydrocephalus afterwards. His eyes were rolling around in his head and is head hurt horribly and all the doctors would say to me was, "He just had brain surgery. What do you expect?"

After I made a list of his symptoms and asked the nurse to show it to the doctor, he decided to do an MRI and discovered he was a "hair away" from needing a second surgery to put in a shunt. I was so angry.

They had to do several spinal taps to relieve the pressure, and each time his eyes would go back to normal and he would experience relief from the pain. It was amazing.

Thanks again for your response and prayers and best wishes for your mom.

[torikat32]

My mom was just diagnosed with normal pressure hydrocephalus she had gait incontinence and cog issues her mri showed enlarged ventricles they did a spinal tap and 2 days afterwards she was walking normal I couldnt believe my eyes when I saw her we had to put her in a nursing home because of the problems . She has to have a shunt put in her brain drain down to her stomach it will take months for her to recoup not fast results like the lp gave her. So do some research on nph talk to your doctors but dont give up.

Kat