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LizardKing wrote:Last one was not interested in doing anything other than more CT scans and a repeat of a camera into the ileal conduit.

CT scans use a very high dosage of x-rays. For example, a single CT scan of the chest uses the equivalent radiation of about 270 regular chest x-rays. That's several lifetimes worth of radiation exposure in just one scan. You can ask your doc if an MRI might be a viable alternative.

NHE wrote:

LizardKing wrote:Last one was not interested in doing anything other than more CT scans and a repeat of a camera into the ileal conduit.

CT scans use a very high dosage of x-rays. For example, a single CT scan of the chest uses the equivalent radiation of about 270 regular chest x-rays. That's several lifetimes worth of radiation exposure in just one scan. You can ask your doc if an MRI might be a viable alternative.

Oh, he gave me like three or four in little more than a year and I was not happy about that.
New doctor tomorrow.....

Saw new urologist yesterday, he spent time with me and explained non-cancer reasons for the bloody urine and possible things I might do to help due
to not having a bladder.
Will see him again in August after some more testing.

Saw doctor today and got a neurologist referral.
Got old blood report and one item stood out that I do not understand:
ANA reflex to Pattern & Titer with a result listed as "Positive (Negative) A"
Doctors say it was a false positive, and that further tests after the initial positive showed it was false.
Reading about it I am still unclear, for example, what does the "A" stand for?
No titer ratio is listed.
Other tests showed nothing out of the ordinary.

Ok, got the MRI report yesterday and it is as clear as mud to me.
I refused contrast because this was my first MRI and it has been months sine suspected attack.
The relevant part of report states:

Mild confluent periventricular and is scattered centrum semiovale, bilateral frontal juxtacortical,
right insular region and left petrigonal region FLAIR hyperintensities without mass effect.

Ok, what I get from this is that there are so many lesions they were not counted in five areas.
No mention of T2 and not sure if type of MRI matters but was told this was not a "sliced" MRI
but a full 3D scan.

Anyone help me make sense of this MRI?
Is it consistent with MS or something else?

The "Impression" section for the MRI report will give you more information.

Snoopy wrote:The "Impression" section for the MRI report will give you more information.

It really doesn't:

"nonspecific white matter changes that are likely due to vaculopathy/vaculitis or chronic
white matter microvascular ischemic changes"

When I look this stuff up it leads me to heart problems and I do not have heart problems but I have had
problems that -might- be related to having MS or something similar for 23 years....
I have read that other people who were eventually diagnosed with MS had MRI reports with the same "impression".

I am not a Dr. and can only give information based on my own experience with MS. The impression section does not sound like the impression section of those with MS.

nonspecific white matter changes that are likely due to vaculopathy/vaculitis or chronic
white matter microvascular ischemic changes

My limited understanding of your MRI refers to blood vessels which can case spots or lesions visible on a MRI, But is not Multiple Sclerosis. Many things can cause brain lesions. If the MRI referred to demyelination then MS is within that category or if the MRI said "consistent with MS" it would make MS more a possibility. However, the MRI is not a diagnosis and it would be up to the Neurologist to determine if what you have is MS or not. This is based on the Neurological exam/evaluation, medical history, testing and ruling out many other conditions that can present as MS.

Information about Vasculitis:
http://www.vasculitisfoundation.org/edu ... us-system/

In regards to your Sleep Apnea: It can take several months of continued CPAP use to see an improvement in your fatigue. Sleep Apnea can also cause physical symptoms and over time of CPAP use you might see an improvement of other symptoms.

Snoopy wrote:I am not a Dr. and can only give information based on my own experience with MS. The impression section does not sound like the impression section of those with MS.

nonspecific white matter changes that are likely due to vaculopathy/vaculitis or chronic
white matter microvascular ischemic changes

My limited understanding of your MRI refers to blood vessels which can case spots or lesions visible on a MRI, But is not Multiple Sclerosis. Many things can cause brain lesions. If the MRI referred to demyelination then MS is within that category or if the MRI said "consistent with MS" it would make MS more a possibility. However, the MRI is not a diagnosis and it would be up to the Neurologist to determine if what you have is MS or not. This is based on the Neurological exam/evaluation, medical history, testing and ruling out many other conditions that can present as MS.

Information about Vasculitis:
http://www.vasculitisfoundation.org/edu ... us-system/

The link says:
----------------------------------------------------------------
The diagnosis of vasculitis, including CNS vasculitis, is based on a person’s medical history, symptoms, a complete physical examination, and the results of special laboratory tests. Blood abnormalities that are found in vasculitis include:

anemia (low red blood cell count)
high white blood cell count
high platelet count
kidney or liver problems
allergic reactions
finding immune complexes in the circulating blood
identifying abnormal antibodies in the blood
an increase in blood markers of inflammation
-----------------------------------------------------

So far testing has only shown the last item in this list which is common for many diseases as many cause inflammation.
What was written in the impressions is far from definitive and if you look into it more you'll see that some areas of the brain
commonly damaged by this were not seen in my MRI.
As usual, the lowest hanging fruit was picked by the radiologist and they moved on.
More than half a decade of suffering from cancer and paying thousands to doctors showed me all I need to know about that.
I had to figure it out myself and get the proper testing done to find it.

In regards to your Sleep Apnea: It can take several months of continued CPAP use to see an improvement in your fatigue. Sleep Apnea can also cause physical symptoms and over time of CPAP use you might see an improvement of other symptoms

Check out this link:
https://www.sleepapnea.com/blog/post/88 ... ms-by-gina

First words of article: "Fatigue and sleep woes are commonly experienced by those living with multiple sclerosis (MS)"

Seeing sleep doctor today with results of sleep lab.
Not sure if they got enough data for me to get a CPAP machines as I had to leave earlier due to the fact there was
no way I was gonna be able to sleep more thanks to pain.
The bed was horrible and all the wires beyond uncomfortable.

I don't need to read a link regarding MS and sleep apnea...I have both. MS diagnosed for 31 years and sleep apnea diagnosed and treated for 9 years.

The impression section does not read like a MRI report for someone with MS. There are many different causes for a person to have lesions. Maybe you have MS but it's very possible you don't.

Snoopy wrote:I don't need to read a link regarding MS and sleep apnea...I have both. MS diagnosed for 31 years and sleep apnea diagnosed and treated for 9 years.

I was returning the favor.
I've been sick for 23 years now and had a bout of cancer that cost me a lot after 5 years of misdiagnosis.

The impression section does not read like a MRI report for someone with MS. There are many different causes for a person to have lesions./

Yes, there are.
Thing is, I have had a lot of tests run and what the impression section read does not fit with the tests, as I stated, though
I have read that other who were diagnosed with MS and apparently had it a long time had a very similar initial "impression section".

Maybe you have MS but it's very possible you don't.

Funny, that was the same thing a urologist told me when I insisted I had cancer and a week later he was shamefaced and telling me I would have to have body parts removed due to cancer.

This is a good time lyndacarol comes in and insists it is vitamin D deficiency, don't you think?

This forum is something else.