Let's get the week rolling...what's up?

[Lulu54]

What are you up to this week? This is our tradition to share any news/events you might want us to put on our radar.  

I'm heading to another MS talk later this week and perhaps a huge panel discussion one on Saturday, but it conflicts with the MS swim time.  Oh, why can't I clone myself?

Other than that, it is a four-day work week, which makes it much easier to get through.  So what about you?  

[sllowe]

thank you!
I really do need to get away from that crap! Last night was my last w/the harsh cleaners. Besides, I'm about out of them anyway.
I'm going to use what you say here and make up some new solutions! Good tip on the cheap vodka ;)
Thanks much for the suggestions, they are great.
-Shell

[Antalya]

Yeah, I do much better in dry weather too.  When the barometer is up so am I ! When it goes down.....  I'm sorry you live on the wrong side of the mpuntains now!  Ann told me she was very happy living in Bend because it was much better weather on the east side of the mts.  I'm really looking forward to visiting!!  Looks so gorgeous.  She loves it too and has been a CA gal almost her whole life.
And a dear friend of mine was hospitalized w/ MS and in a wheelchair for quite a while - BUT hasn't been in one for the  over 5+ years I have known her.  So you can do it !!!!  Rock climber eh?  I'm impressed.  Tried that once and I think got up 20' and was scared to death.  PLUS too wobbly weak.

Shell- get away from all that toxic stuff!!!!!!  Just cleaning something will do as well as blasting it with those chemicals. I have read that SO many times. And use rags, not paper towels, to scrub.  I make my own multi-purpose cleaner for surfaces (floors, counters...)  1Q water + 1T vinegar + 1/2 t. borax + 1/3 t. dish detergent.  Make sure mixed.  Mirrors?  1/2 vinegar + 1/2 water. Scrubbing sinks and tubs:  1/2 baking soda and 1/2 boric acid.  Believe it or not, I've been reading recently about using cheap VODKA in a spray bottle to disinfect.  You can even put in some orange or lemon rind for scent - or any essential oil you'd like.  Evaporates almost immediately, disinfects and is non-toxic.  I would think cheap vodka on sale wouldn't be too expensive - you wouldn't use too much.  Better than all those horrid chemicals that you can't even pronounce doing heaven only knows what kind of damage to your lungs, skin, eyes.... aaakk!!

[thenea]

I started the first week of my last year in nursing school.  I'm working in pediatrics, psych and medical-surgical this semester.  The look of horror on my face when my professor was demonstrating how to use a "football hold" on an infant to free up your other arm to do things like change the linen was pretty priceless.  Sadly it was not documented.   Suffice it to say I am more comfortable around older adults.

It's also been incredibly cold in NY (about 13 degrees in the morning, high of 20 mid-day).  I don't know if anyone else has this problem but I can't have my heat turned on in my car by my feet when I'm driving.  They almost feel like they're going to sleep or as if my circulation was cut off.  Strangest thing.  Always assumed it was related to MS.  Anyone else ever experience this?

[sllowe]

Holy moley - it's Thursday! You said get the week rolling, and it's nearly past!

What a busy crew! I wish you all well w/your appts and such. Sarah, I got a laugh out of the dish soap, have heard it works, I'm sure you'll be back all natch before long. Geesh - it's all I can do to keep the dye IN my hair, lol

I'm just working, no appts. Still dissenfecting my house steady -  4 down from the stomach virus and only one (me) to go for the past 4 weeks. I'm not a happy camper, my hands are burning, my lungs are hurting from lysol, and I'll be glad when this crap leaves for good!

Happy almost weekend folks.
(((virusless cyber hugs))
shell

[anon07072023]

I had a cystoscopy twice. Both times they take some sort of numbing stuff on a long Q-tip and then put it inside the area before he did it. It wasn't too bad. I was really afraid, especially when he pulled out the oozie machine gun looking device.  Yeah, anything like that, like you said, feels pretty invasive.

[MellieHegge]

Thank you for your kind words. Anything to do with Urology seems invasive to me. Cathing isn't to bad after I learned how to do it right... And it took me a while! That is whole other hilarious story...I am just over the Cascade range from Bend about an hour or so. I used to live in Bend and would love to move back there! Oregon is a beautiful state, rains more on the west side than I would prefer I do better in dryer climates. I'm getting a bit nervous about my appt tomorrow. I'm praying they begin some type of MS treatment. My memory and cognitive functions are not good, and I am mind set on not being in my wheel chair my whole life! I am 31 and I was an archery hunter, rock climber and total outdoors girl!

Have a great week!
Mellie~

[Antalya]

Hi and thanks for your kind answer.  I just wrote out a long reply - and then hit another key and it went away.  :  --((    Frustrating.
The news that you had some sedation for your cya. made me even madder @  my Dr.  I got nuttin'  Oh yeah - I'll just shove this metal pipe up you and then scrape around a bit.  GRR.  I have to find out the purpose of the urody. test for me now.  And how it can improve my life w/ the info.
I can imagine how those tests would give you the creeps. Major invasive for anyone - much less someone who has had any sexual trauma!!!!  I'm so sorry.  Also sorry about the self cath.  Hope that isn't too  bad - another thing to get used to.  
My issue is urgency and then inability to hold it.  And of course not too personal!!  All goes here - I would think. But thank you for your concern.  
I try to not have my life revolve around MS - but this last month and 1/2 has been almost impossible.  PT tomorrow - so hope this is beginning of healing!!!
How far away are you from Bend?  I have a dear friend there.  Everything I have read about OR looks fabulous.  I love Portland, but have never been anywhere else.  (She moved recently)  All kinds of neat housing, food and misc. environmentally friendly things happen there.  Love it!  Hugs, Marcia

[MellieHegge]

Oh honey I'm sorry about the urologist things. I have neurogenic bladder and self catheter each time. My cysto wasn't to bad they gave me something to sedate me. The urodynamics isn't too bad. It was difficult for me because I have a bad past of sexual trauma but they fill your bladder and take picture and have sensors that measure your muscle activity while you void. For most people the test is quick and it is painless. It is just a bit personally invasive. Are you having difficult voiding or incontinence?  (If that's not to personal) :) Best of luck Hun, I hope they get things figured out for you soon dear. In the meantime stay upbeat as possible and remember MS doesn't own you! Much love~Mellie

[MellieHegge]

Hello all!
I know the week is half over but I just returned from a trip visiting my family. My trip was great and relaxing, I am pretty exhausted upon my return. Today I get my PICC line removed and tomorrow I see my PCP this will be my first visit since my dx of MS. I'm praying she will start some time of treatment since I don't see my neurologist until the end of February..

Hope you are all doing well and having a great week!

[kwarendorf]

Marcia-  LP = Lumbar Punture = Spinal Tap

[anon07072023]

I had swallowing PT on Mon and will have it again on Thurs.

I'm trying to work all week between appts.

Friday I'm off to Denver to see a hematologist at the cancer ctr that my oncologist refered me to - to see if I have some sort of blood disorder or something else going on with me.

Besides that I've made reservations to go to my grandma's 90th b-day in Feb. It will be nice to be back in Chicago to see all my mom's side of the family.

[Antalya]

PS And you'll have time to research Ohio!  My dad grew up in Toledo and I have 2 cousins close to Cleveland.  Lots there!  Like it.

[Antalya]

Yes, from what you are saying, the neuro testing would be helpful.  I got my SSD the first time because of it - I understand that is pretty rare.
I ended up being so stressed at work from the cognitive stuff that I basically couldn't do it any more.   Plus I had a very CRUEL boss. I was going nuts trying to keep things straight.
It took me at least 6-8 months to stop shaking all the time - and having bad dreams.  I still have them occassionally - 14 years later.
Best thing I ever did was to leave.  My insides relaxed and stopped vibrating - my hands stopped shaking (now they are terrible, but that is MS not Annbeth. LOL)  - my eyesight got better and things just seemed a bit clearer.  It was so wonderful not to get up in a panic-rush every morning and be able to sleep.  And not feel nauseous from fatigue almost all the time with eyes burning.  Need a nap?  Ok.  Think I''ll take one.  
Plus you can take advantage of more MS events that happen during the day.......
I am just SSSSOOOO thankful that I don't have to work.  I think of it practically every day.
So good luck with your decision.  But you'll feel physically better leaving work behind, that is for sure!!
Best Wishes,  Marcia

[byyygrace]

Marcia,

My Neuro suggested the testing. If I had to quit work, it would be helpful I'm told. Most days I'm optimistic that I can continue my job with excellence but by the end of the day I'm thinking, "Oh, never mind"! Lol. Between the fatigue and the cognitive problems, I struggle.

I'm in sales and work on commission, half the time I can't remember my customers from the day before or find correct info on my own(some of my coworkers are beginning to take advantage of this). I was the top salesperson in our store this past year even though I'm only at about 50% of what I was a year ago. I'm hoping for a better year!

I have a son and daughter in law and 6 of my 9 grandchildren in Boardman, OH. That's in the NE part of the state near Youngstown. I'm originally from West Virginia but have been in KY since 1998.

[vwick77]

Electromyography (EMG) is a diagnostic procedure to assess the health of muscles and the nerve cells that control them (motor neurons).

Tests for peripheral neuropathy

I will try to send some warmth your way!!!

[vwick77]

Hahahah don't mean to rub in the 70's lol I'm from the northeast so I understand true cold winter weather.  Had enough of that for a lifetime! Hahaha stay warm!!!

[kwarendorf]

Lulu- I have read where it is possible to dectect JCV DNA in CSF earlier than in blood tests. This "About" article lists LP as the second diagnostic step. It also says that some docs go right to LP. I had blood srawn for the JCV test a couple of weeks ago. I assume if it had been positive they would have told me. I will trus, but verify, tomorrow :-)

http://ms.about.com/od/treatments/a/How-Is-Pml-Diagnosed.htm

Kyle

[Maks322]

Getting up to a snow storm, though it doesn't look as bad as they thought.  Temperatures below freezing.
Thursday big day for me with a MS specialist for a second opinion.  Now that my non-MS symptoms have been explained by a Diagnosis of Myastena Gravis, will I get out of Limbo land?  Also hoping the discovery of the lesion in the corpus calloseum will help her.  If not, I definately will have more questions for her than I usually ask.
Work crazy busy, but this appointment was scheduled in September, so I could never reschedule.
Hope everyone has a good week
Maureen

[Antalya]

Colin~ Is the neuro-psych to use for rehab?  Disability proof?  (What I used to get my Social Security Disability)  Eight hours worth of testing is exhausting.  Good luck!  Where in OH?  Really like that state.

Lulu54 ~ What is an LP test?  And I know the JC virus test has to be done periodically - maybe you caught it somewhere before the initial test!  

vwick ~  What is an EMG?  Would love a little lovely 70 degree weather here!  NJ is waiting for a snowstorm.  Enjoy!

doublevision ~ Your move sounds exciting, but EXHAUSTING.  I hope you do well with all your changes and have plenty of help with getting all organized.  I may be moving only about an hour away  - nothing like your doctor commutes.  !  Guess I can keep 'em.   :  -))

Sarah ~ Do you get sick every infusion?  I felt really sick after the first but only very mildly for the 2nd and 3rd.  (All I've had.)  If you get that sick after each one, I'm sorry.  Awful.  

Now, of course,  a question.  I have just started w/ the urology stuff.  My second appt today was, I think, a cystoscopy.  Has anyone had this w/ no anesthetic?  Nothing was ever discussed ahead of time - and I'm not positive that was even what I had - altho she did say afterwards that I have  bladder cysts.  She said about 1/2 of all adults have them.  It hurt - not terrible - but pretty bad for a couple seconds a couple different times.  I was certainly surprised.    Thoughts?

I'm going back next week for a urodynamic test.  Oh goody.  Not.

All the fun things we get to do!!!   LOL.  I swear, all I do is go to dr appts!  Not really really - but they are certainly often.

Now I need to start PT that I have never done before.  I am looking forward to this, actually.  I'm hoping this will be a regular thing.  Get me OUT and MOVING.

My big excitement for the week has happened already.  Between my fabulous dr appt - mitigated by a nice lunch w/ a dear friend.  And then a quick shop at Trader Joe's.  Home for a "nap" - up @ 8:45pm. !  Couldn't keep my eyes open.

Then got up and felt mildly nauseous.  Does anyone else feel mildly nauseous, kinda queasy often?  Pretzels usually help- or anything salty.

Back to bed!  Goodnight -  Hope all have a good, peaceful, interesting week!       ------- Marcia

[byyygrace]

Going to my PCP in the morning before work to check out the weakness and breathlessness(BP's been crazt\y too) and waiting to hear from my neuro for neuro-psyc eval appointment. Fun times! Contemplating a move to OH to be near grandchildren......

Stay warm everyone!

Blessings,
Colin

[PastorDan]

Shame on you, vw77!  We're expecting wind chill of -15 deg. F in the morning!

Weekend taken up with visiting funeral locales.  MLK day also let me work on shoring under the house more.  Nancy twisted arms of her youngest, so little of it was by myself today.

4 day week...   Five jobs; last day off was ...   I think it was warm, maybe.  Dunno.

Allegedly meeting church contractor late tomorrow, but he's broken more promises than some politicians.

Brain too tired to think further downweek, but I don t recall anything.

Peace &blessings blessings, all.

[Lulu54]

I am still bamboozled by the LP for the PML - there is a blood assay test for JC virus. If you are negative you would not need further testing from what I understand.  Is there a reason why your neuro wants to do this now?  
I did find this interesting article about LPs and PML.

http://www.ccjm.org/content/78/Suppl_2/S38.full

[maxthecat43]

I have an appt with my neurologist on Friday.  Not much else.  Have a great week everyone.

[vwick77]

Happy Monday !

I have my EMG booked with my MS Specialist on Wednesday but can't seem to get through the insurance company to check status on my insurance today, due to it being a holiday but will check tomorrow.  If no insurance yet have to re book my diagnostic testing :( frustrating !!!!  

Heading to the park later today with the hubby and kids to enjoy some beautiful 70's weather in Arizona :)

Have a great Monday to all of you!