Stand still, still....

[Nancy-S]

I obtained the results of my brain MRI today. They look good. There are two comments, 1) atrophy 2) white matter (usually associated with stroke or small vessel something). The neurologist said she wasn't concerned about either because it was such a small amount. I like her, she's great. But she has zero experience with wgs.

The ENT I was so thrilled about is new in town. He is very professional and takes his time. He knows very little about wgs also. He said my slight hearing loss isn't anything to worry about. He thinks the ear pain and throat pain are nerves. My sinuses look "pristine". That was good news. He is considering something called Eagle syndrome, but I'm so over all of it, I don't even care.

Both suggested Gabapentin, so I agreed to start that. Anything to help with this irritating pain.

MOST IMPORTANT, as I was going through all my old labs in preparation I found some abnormal test results that no one bothered to share with me. They are Creatine Kinase, Gran # under Glucose Serum, LDH, RBC, Sed Rate, and WBC. Booooo for all of the docs for keeping this from me. I think it would have helped me to know this last fall, if I'm anemic surely I would have started on iron. And of course, the abnormal c-anca/pr3 are listed but they were kind enough to discuss this with me.

Any idea why they wouldn't talk to me about these? Is it because they aren't awful numbers? I don't know what markers they use, or how to find out. RBC for instance is 3.5. I think not terrible, but low. I don't know what to think.

I want to call Utah and tell them about the white matter on the MRI, and the weird labs, and new nose sores. ENT rx antibiotic for that and said to return if it's not better in 10 days. Before I left he told me if I have wegs I'm "lucky". He meant that I'm lucky to be so healthy. I raised my voice a little and told him I am NOT lucky, my story mimics most patients in the early stages. I will consider myself lucky if this never progresses. I couldn't think what else to say to that.

I'm ready to move forward. No more labs or Dr.'s appointments until April when I go back to Utah. I'm okay with that.

[Lightwarrior]

Nancy,
I am currently suffering the most severe case of shingles any of the docs here have ever seen (joy, joy) but the reason this is relevant to you is that I had a four hour period where I couldn't swallow and became confused, head CT and MRI later I also have atrophy and white matter changes associated with small vessel disease. I see a very good neurologist on Thursday AM, so I will let you know the outcome. I just find it interesting that we both had similar info same week.

On your blood tests, sometimes the abnormal isn't that significant and sometimes they(providers) aren't really sure what it may mean i.e. abnormal c-anca/pr3. Did Utah ever add a Weg specialist?

I still have my story to finish but it hurts to type. I'm sending you white light.

[Nancy-S]

I was wrong, it was the WBC that was 3.5

[Lightwarrior]

I was wrong, it was the WBC that was 3.5

OKay, if it continues to drop you should stay out of crowds

[Nancy-S]

Thanks for the light, I can feel it.

That's so interesting, thank you for sharing. I'm going to sit my husband down and have him connect the dots with me. Yes, please let me know the outcome. Sending positive vibes right back at ya! Feel better.

[Al]

One question, Nancy: "white matter"...what? White matter just refers to brain parts (glial cells and myelinated axons), not abnormalities. So what are the concerns? Few neurologists, in my experience, know much about WG==more's the pity, since a large percentage of WG patients have neural issues. (Central Nervous System anamalies are something else: rare in WG, but extremely serious.)

I think your docs were lax in not discussing blood tests that were out of range, though, to be fair, perhaps they were close enough that they were in the "watch and wait" category. We don't know this, however. You are entirely within your rights to complain, and to ask for specific commentary.

Anemia may, or may not, be improved with iron intake. In large part, this depends on kidney function. Speaking of kidneys, gabapentin (aka Neurontin) and similar drugs are questionable for kidney patients. Your WBC count is slightly low, but not terrible, so do keep your eye on it.

Thanks for the report!

Al

[mishb]

Hi Nancy,

Its still sounding more and more like wegs to me, but I'm certainly no expert. :unsure:

I posted yesterday in another thread about my rheumatologist withholding test results from me about abnormal kidney results. Their reasoning was because it wasn't much of a difference and it would only have caused unnecessary stress - and stress is something that only makes things worse.

Here's looking forwards and upwards for you.

[Nancy-S]

....it would only have caused unnecessary stress - and stress is something that only makes things worse.

Here's looking forwards and upwards for you.

I feel like as the patient, we should be the ones to decide, I'm thinking you agree. But I can only speak for me, and the unknown is much worse then knowing. Thanks for the well wishes. It does feel nice to not have anything scheduled in the next few weeks.

[Nancy-S]

One question, Nancy: "white matter"...what? White matter just refers to brain parts (glial cells and myelinated axons), not abnormalities. So what are the concerns

I find it interesting that white matter is what we call certain brain matter, but it's also a term used to describe an abnormality in the brain. The report suggests several spots have white matter showing "early small vessel ischemic disease". It also happens when there's been a stroke, and damage from migraines.

[Al]

I find it interesting that white matter is what we call certain brain matter, but it's also a term used to describe an abnormality in the brain. The report suggests several spots have white matter showing "early small vessel ischemic disease". It also happens when there's been a stroke, and damage from migraines.

Ah. Thanks for clarifying. Yes, I think the folks in Utah should be advised....

Al

[me2]

It shows up as white spots on the film, meaning these areas have died for some reason. I have lots of them. I actually remember some of them. I was told they were probably small strokes. They would affect me for a few days and then I would recover. I was told they were probably due to WG and nothing to be done about it. I am lucky that I always regained function (some affected my vision. My vision is very good again - I feel lucky)

[Sangye]

Nancy, how did your neurologist explain the difference between your last brain imaging results and the current one? They are miles apart. :confused1:

I know you don't want to hear that you're lucky, but you are. I don't want to minimize your symptoms but it's also important to keep some perspective.

[Nancy-S]

Sangye,

The neuro didn't explain any difference. With the CT scan there was the "advanced atrophy" to dig into, but not a huge concern. The MRI also showed the atrophy but additionally showed the white matter. So, not so much a difference with the MRI, but she was able to add some items to our "watch" list.

I feel healthier than many, but I wouldn't consider myself lucky yet. I'll feel lucky when I get help.

I'm going to meet with Dr. K. in a few weeks, and I'll bring it all with me for him to review. I have only one question for him. IF, he knew for sure that I have wgs, at this stage in the disease, what would he do? When I review my Utah notes from January, it reads as if the decision to not treat was based on the lack of "end organ damage". That, with me (I'm not an expert), doesn't sit well.