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October 2014 update ...

Oct 11, 2014 - 2 comments
Tags:

tcc

,

transitional cell carcinoma

,

ms

,

Bladder Cancer

,

ms mimic

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autoimmune

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Incontinence

,

vision



I just typed out this quick summary for a friend here.  Realized I wanted to document the last six months, so am copying here :).

********
ALS ruled out.  Big relapse July-August where I couldn't walk, then no balance for a couple of weeks, plus urinary retention and incontinence. Neuro opth sent me to tertiary hospital ER hoping for emergency MRI's.  They didn't get done, so nothing was imaged during the middle of the crazy.  Everything resolved including double vision end of September.  had mri's September 5, more than a month after the relapse had started.

Urologist who investigated urinary retention found a bladder tumour -- that will be removed October 17 (thankfully!).  He is 99% certain it is transitional cell carcinoma -- a product of my history as a research chemist.  So of course just had a catscan to look around in my abdominal and pelvic area to see if it had migrated anywhere.  No results yet.  I do have something in my kidney as per an ultrasound which could be the same thing, or be unrelated.

I find it odd that even though a cancer dx was left field and threw me for a complete loop for about a week, that I have already accepted it yet STILL the limbo thing drives me insane ;).

Cool thing -- yes I'm an optimist -- there's actually an ms mimic that is cancer related called neurological paraneoplastic syndrome.  It's very rare with bladder cancer -- but it happens. It's actually auto-immune where the immune system goes crazy trying to reject the tumour and the result is all sorts of neurological sx similar to both ms, and what I've been experiencing.  

My current issues won't disappear with tumour removal, however nothing new would show up after cancer is dealt with.  I can deal with this.  So I'm hoping that THIS is what I have rather than ms.

Even if it's still ms (I see my neuro next in November or December, and just had mris which put ms back on the ms table again for the ... third? ... time lol), the chronic infection I've had because of the tumour would have made all my ms-y symptoms worse.  One of my neurologist's concerns, I believe, were that my sx were out of proportion to my lesion load (1.5T).  This might explain why.

I had a complete meltdown on the day of my catscan.  No reason other than I am so DONE with medical procedures and tests and hospital basements and ... yeah,  you get it I'm sure.

But I'm good-ish again. Just w a i t i n g . . . .

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Avatar universal
by massie7899, Oct 15, 2014
Sorry to hear about the possibility of transitional cell carcinoma. I pray that you will  get some answers soon and your surgery will go.Please let me here from you I share your frustration immensely and please stay strong.

I saw neuro on Monday and feels  my symptoms and abnormal testings are due to cerebral small vessel disease of the brain and may not be MS.Chronic brain lesions which are  periventricular and subcortical white matter lesions. We will repeat MRI in 6 months. Neuro felt lesions should show some changes over course of time if MS and if they don't it usually vascular. I past history of Migraines with Aura. Last incidence 4 years ago. Onset of worsening of symptoms 1 year ago

5265383 tn?1483811956
by aspen2, Oct 15, 2014
It is frustrating, massie.

In the last two days I have spoken to two medical professionals, one my anesthesiologist for my surgery, and a nurse today.

The anesthesiologist listened to my explanation of why the neuro doesn't think it's ms, plus my mris results and symptoms, then told me that as far as he was concerned, I had ms and he was treating me as such.

Today I as going over medication reactions with a pre-op screening nurse, who after hearing about all my weird sensitivities, asked right out, "Do you have ms?"

Sigh.  The only medical professional I have (about 10 now) who doesn't think I have ms is the only one that can diagnose me :P.

Ah well, one thing at a time.

I'm so sorry.  BUT I will say, massie, that if your neuro KNEW it was small vessel disease of the brain, he would absolutely not be calling you back in six months.  You are being followed because ms is obviously still a concern.  PLUS did he mention you getting testing for vascular issues?

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