Unexpected medical adventure

[missy]

@TooPatient I tried putting these 2 links in pdf form but here's the link in case that doesn't work.

https://www.mayoclinic.org/diseases-conditions/neuromyelitis-optica/symptoms-causes/syc-20375652


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4229040/

 

[TooPatient]

Best distraction for blood draw?

Browse for diamonds

 

[missy]

Best distraction for blood draw?

Browse for diamonds

https://www.naturallycolored.com/blog/zoe-diamond-most-expensive-blue-diamond/



9.75 carat Vivid Blue Diamond.
Not bad right?

 

[Bonfire]

I keep coming back to check on you TP. You have a lot of mother hens on this thread and we all care about you! I hope you can draw some comfort from that.

 

[AGBF]

Well...these aren't diamonds, but maybe they will take your mind off your problems for a few seconds, TooPatient. Bonfire sent me off looking for a picture of mother hens, but they don't seem to hang out in groups. Each one seems to stick with her chicks, or in some cases, with her puppies, or her kittens, or her lamb. We have some exceedingly motherly hens in this world! I was pretty astonished at all the creatures they could be seen mothering in photographs!

Big hugs,
Deb

 

[ringo865]

TP sending hugs and calmness (well, I don't have any calmness, but am sending you the thought of calmness) through your testing today. Hopefully you can go home tomorrow and they'll figure out what's up sooner than later.

In the meantime that Zoe looks amazing!

 

[cflutist]

Sending continued positive thoughts and hugs your way. Hope that they identify the condition quickly.

 

[yennyfire]

Just checking in to see how today went TP....you've been on my mind all day!

 

[luv2sparkle]

TP, I just saw your thread. I am so sorry you’re u are going through this. Much prayer for you.

 

[whitewave]

Pulling this out of random comments as it has become more than just a pssinpa thing... I wish it was!

I started losing vision in one eye Friday. Saturday was pretty bad so I saw an optometrist. No physical damage so he referred to a neurological opthalmologist. By Sunday morning, my vision was very severely impacted so DH took me to the emergency room. MRI of my brain showed three lesions on my brain. I was transferred to a specialty hospital to continue testing and treatment.

This morning, I have almost no vision in my eye. Not even shapes or colors. That isn't what they would expect with the lesions so they are looking for what is causing it. Looks like a neurological opthalmologist visit is on schedule for the day.

My full body CT scan was mostly clear but there is something on my liver. Another team is working to asses that.

Neurosurgery is bringing oncology in due to the appearance of the lesions and my family history. They may need to do a biopsy of my brain as early as tomorrow. With the location of the lesions, that would be a nickel sized hole cut in the back of my head if they do a needle biopsy. Otherwise a larger hole if they remove then biopsy.

All three are small. The largest is under 1 cm. Two smaller are on one side of the back of my brain and the larger is on the other.


Any advice, things to watch for, recovery after brain surgery, etc very welcome and appreciated.

I’m thinking and praying for a smooth evaluation.

 

[arkieb1]

Think about you and sending lots of hugs and positive thoughts as well!!!

 

[MarionC]

Dear, dear TP, sending powerfully positive thoughts to you this morning, and hugs. <3

 

[Begonia]

TooPatient - I’m praying that everything will turn out okay. You got this.

 

[WhitePeonia]

Dear TP, you are always in my thoughts.
Stay strong.

(May I add that the PS community is proving to be so very special, once again: you are all wonderful people)

 

[TooPatient]

I'm doing okay. Not tumors. Waiting for results that may show MS or other similar disease. May also be some big optical thing. NMO? Waiting on those results too.

Yesterday was rough. Had some IV troubles so the anesthesiologist had to remove one and do a fresh but had trouble getting it in after a no drink order in prep for the spinal tap.

Had two bad IVs removed plus 6 failed attempts. So much blood taken that it took two veins in my arm plus one in my hand to get enough blood out. I hurt so badly right now they are using my legs to get bp readings when they come in.

They are saying no need for brain surgery at least as of now. Hoping that stays true.

The LP went okay except the IV trauma. Ativan forced into my arm tissue the first attempt left me in pain and not mellow. That is why they rescheduled. The second time was where the anesthesiologist took out the bad IV and replaced with one in my hand... After several attempts.
I did my best to distract myself looking at a 1.5 carat oval cut diamond the nurse had on. Cloudy and poorly cut, but pretty. Her delicate diamond WB along with it was pretty too. We talked about @Wink and his gorgeous cuts plus a local jeweler I am planning to go browse when I get out of here. Trying to look at the nice pretty stuff in life with so much unpleasant around me right now.

LP results should be tomorrow. Should also have updates from all of the teams working on this.

I started IV sterokst as the neurological opthalmologist says this may bring my vision back. I'm a little incleau about how long it takes or how much to expect back. This is in my list of questions for tomorrow (well, today now).

 

[TooPatient]

Thank you all for all of the continuing support, advice, hugs, and encouragement. I haven't been able to reply to each of you personally but have read each comment with a smile. This has been a very bad time with some pretty unpleasant options being tossed around and your support means more to me than I can say. Thank you.

 

[Sunstorm]

TP I am so happy that you have good news, no tumors and you are feeling positive and looking on the bright side! You will do just fine. Definitely dream about some retail therapy and get some once you get out! I am sure the steroids will help, finally they are getting it done. Keep us posted about your progress and also what the results are. In the meantime we are here for distraction.

 

[TooPatient]

Has anyone had IV steroids?

Wondering if it makes your arm ache during and after the IV drip...
Not sure if it was that or just already sore from so many pokes in the day.

 

[MaisOuiMadame]

Dear TP, hang in there. It is tough, but it seems you are getting top notch medical care. I hope today will be a good day for you and I keep you in my prayers.

 

[december-fire]

Thank you for the update. The issues with the IV sound awful, but I'm glad to hear that there are no tumours, looks like no brain surgery required, and they're hoping to reverse the vision loss.

I smiled when I read that there was a diamond-wearing. jewellery-loving nurse with you. Of course there was! The Universe's practical way to let you know PS is with you, since we wouldn't all fit in he room with you.

I hope you get some answers soon as to what's going on and how to deal with it.

Continually sending hugs, prayers and comforting thoughts.

 

[junebug17]

Good news about no tumors TP, but sorry you are in pain and so uncomfortable. I hope the steriods help your vision and you get some answers soon. This is such a stressful and difficult thing and I'm just so sorry you have to deal with this. I'm glad dreaming of bling is distracting you, you are a true PS'er lol. Continuing to think of you, and sending lots of love and support. (((Hugs)))

 

[lyra]

I get an infusion (IV) every 6 weeks but not steroids. I'm SO sorry for your IV troubles. It was very likely due to the water restriction. When I have to do an infusion, I drink tons of water for the 3 days before, plus about a litre an hour prior to. Being well hydrated makes a huge difference. Same for blood tests actually, only not for days, just day of. I'm glad there was some good news. I hope the steroid treatment helps.

 

[missy]

TP hope you were able to get some sleep.

My best guess is you will be on IV steroids for 3-5 days. It's used for acute exacerbations of NMO and even if this is not NMO corticosteroids are the mainstay of acute anti-inflammatory treatment. After the acute stage is better controlled there are many other long term treatment options.

Hoping the IV steroid treatment helps restore your vision in the affected eye. And I hope you are feeling less pain from yesterday's IV trauma.

(((HUGS)))

 

[TooPatient]

TP hope you were able to get some sleep.

My best guess is you will be on IV steroids for 3-5 days. It's used for acute exacerbations of NMO and even if this is not NMO corticosteroids are the mainstay of acute anti-inflammatory treatment. After the acute stage is better controlled there are many other long term treatment options.

Hoping the IV steroid treatment helps restore your vision in the affected eye. And I hope you are feeling less pain from yesterday's IV trauma.

(((HUGS)))

That sounds familiar. One said every 6 hours the other said daily. I need to get more questions answered today.

I didn't sleep much. Took forever to get sort of comfortable then I was sipping herbal mint tea all night after so little fluids yesterday. I don't want to be dehydrated when the next needle walks in!

My "good" IV is aching pretty badly. Not sure if it is IV or from steroids, but likely IV as I have a big bruise visible under the tape. Not sure if I want to ignore this and hope I go home today so it will come out or ask for the IV nurse. The idea of them taking another half dozen attempts at an IV just is scaring me.. That was a lot of pain.

 

[tyty333]

Thanks for the update TP...yesterday sounds like it was less than enjoyable to say the least...all that IV drama had to be painful. I hate IVs.
I'm so glad that your team seems to be doing their do-diligent and trying to figure out whats going on. Hang in there. Hoping you get back
some eye-sight with the steroids...better to see the bling with

Keeping you in my thoughts...hoping today is a less pain inducing day...you need some time to recoup!

 

[missy]

That sounds familiar. One said every 6 hours the other said daily. I need to get more questions answered today.

I didn't sleep much. Took forever to get sort of comfortable then I was sipping herbal mint tea all night after so little fluids yesterday. I don't want to be dehydrated when the next needle walks in!

My "good" IV is aching pretty badly. Not sure if it is IV or from steroids, but likely IV as I have a big bruise visible under the tape. Not sure if I want to ignore this and hope I go home today so it will come out or ask for the IV nurse. The idea of them taking another half dozen attempts at an IV just is scaring me.. That was a lot of pain.

Don't ignore any pain or symptoms. Please let your nurse/doctor know exactly how you are feeling and what you are experiencing. I get wanting to go home believe me I do but please don't keep secrets from your healthcare providers. They need all the info to make you comfortable and keep you safe.

I hope this becomes a distant bad memory for you soon TP and that you are feeling much better very soon.

(((HUGS))).

 

[ksinger]

I'm doing okay. Not tumors. Waiting for results that may show MS or other similar disease. May also be some big optical thing. NMO? Waiting on those results too.

Yesterday was rough. Had some IV troubles so the anesthesiologist had to remove one and do a fresh but had trouble getting it in after a no drink order in prep for the spinal tap.

Had two bad IVs removed plus 6 failed attempts. So much blood taken that it took two veins in my arm plus one in my hand to get enough blood out. I hurt so badly right now they are using my legs to get bp readings when they come in.

They are saying no need for brain surgery at least as of now. Hoping that stays true.

The LP went okay except the IV trauma. Ativan forced into my arm tissue the first attempt left me in pain and not mellow. That is why they rescheduled. The second time was where the anesthesiologist took out the bad IV and replaced with one in my hand... After several attempts.
I did my best to distract myself looking at a 1.5 carat oval cut diamond the nurse had on. Cloudy and poorly cut, but pretty. Her delicate diamond WB along with it was pretty too. We talked about @Wink and his gorgeous cuts plus a local jeweler I am planning to go browse when I get out of here. Trying to look at the nice pretty stuff in life with so much unpleasant around me right now.

LP results should be tomorrow. Should also have updates from all of the teams working on this.

I started IV sterokst as the neurological opthalmologist says this may bring my vision back. I'm a little incleau about how long it takes or how much to expect back. This is in my list of questions for tomorrow (well, today now).

Wow. I'm SO sorry you had so much trouble with IVs and blood work. Less than competence in people doing those things, is the bane of my existence. And IVs in the hand are the worst, and the worst place to have a less than really skilled person poking around. (I have stories, as always ) I just know that for anesthesia, they prefer wrist or hand. Bit of advice for medical stuff going forward: even the best has a bad day. If he/she tries twice with no success, put your foot down and ask for someone else. You're not paying good money to have them do pincushion practice on you. Nurses who work in ERs or critical care are often the best at getting it in in one.

And ah! The gallons of blood they take. They will likely be testing for signs of lupus, syphilis (no kidding), diabetes, vit D, vit B12, and a bunch of stuff that I can no longer remember. I just know I had 11 vials of blood taken that first time. The differential diagnosis (things they have to rule out) for MS is very long. The first and most important rule of a MS diagnosis, is they must rule out anything that can better account for the symptoms you're having.

I've never had IV steroids, my situation was different so almost, but decided to pass. But know many who have. And if I'd had ON*, I most certainly would have done them. I've heard they can work pretty quickly. They shorten the acute phase of ON, which I read generally develops for about 7-10 days, so that should reverse and shorten up and healing will get going faster. But it can take some more time for full vision to come back - like weeks. Most people do get full vision back. I hasten to say, that all my info on this is anecdotal, so I'm sure your doctor will give you more details

It's great that you will be finding out the LP results tomorrow. They've obviously got their own facilities and don't have to send out to another lab.

*ON = optic neuritis

Gotta run! Going with my SIL to a biopsy she's having. (It just never ends it seems) I'll be thinking of you today.

 

[TooPatient]

Don't ignore any pain or symptoms. Please let your nurse/doctor know exactly how you are feeling and what you are experiencing. I get wanting to go home believe me I do but please don't keep secrets from your healthcare providers. They need all the info to make you comfortable and keep you safe.

I hope this becomes a distant bad memory for you soon TP and that you are feeling much better very soon.

(((HUGS))).

Oh, they hear from me on any little flash of light, sore anything, or whatever else seems odd or is something I'm not used to.

So far, two nurses and two aids know about the discomfort. I'm also going to mention to everyone who comes in this morning. I just don't know if I should accept the "oh, that is difficult" sympathy with no action or insist on seeing the IV nurse.

 

[missy]

Some more eye candy for you TP to help occupy your mind while you wait this morning.

https://www.instagram.com/harrywinston/?utm_source=ig_embed&action=profilevisit






https://www.instagram.com/frankbeverett/

 

[missy]

Oh, they hear from me on any little flash of light, sore anything, or whatever else seems odd or is something I'm not used to.

So far, two nurses and two aids know about the discomfort. I'm also going to mention to everyone who comes in this morning. I just don't know if I should accept the "oh, that is difficult" sympathy with no action or insist on seeing the IV nurse.

Insist on seeing the IV nurse.