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572651 tn?1530999357

Tales from Beyond - MS and Halloween!


Halloween has nothing on us – we’ve already had the bejeebers scared out of us with all the MiSerable disease nightmares.  How about we share a few tales of the scariest hauntings we have experienced on the diagnosis and treatment trail?

It could be something creepy, scarey, spine tingling or downright frightful!  

So instead of a neuro roast this Friday night, how about we share some spooky tales?

Lulu
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572651 tn?1530999357
I would be hard pressed to pick a winner out of this group.  It seems we all have our own scarey encounters to haunt us.  

Tick, your tale is truly spine tingling ---- how could they not call you and tell you about a brain tumor?  OMG!!!!

Julie, fortunately with MS we don't ordinarily get the blood and gore part of disease.  Those emg needles must have really been stuck in you!


Dennis, that sounds like an episode from Twilight Zone --- truly spooky to think of being lost so close to home.  

There's a few hours left before the witching hour ---- anyone else???

Helpful - 0
559187 tn?1330782856
Oh people, you have such great stories and info.  I've been letting the kids pick their own candy tonight - better stop that!!!!

I have a little fright of my own...After my first EMG, which was more involved that I had expected, the doctor left me lying on the table in a gown and unable to get up by myself.  He was already out the door when for some reason he came back, probably noticed I wasn't getting up.  He asked what was wrong and I told him I needed hlep.  Well he helped me alright, but as soon as I was up he dashed out again.  I had to yell for him to come back when I saw blood dripping down my legs.  He handed me a papaer towel to clean it up and then asked in a sarcastic tone, "Will that be all?"

Geez, if I were a trick-or-treater tonight at his house tonight, I'd TP it. Only kidding.

Julie

Helpful - 0
645800 tn?1466860955
This one is a little bit funny now, but it sure scared me at the time. Best of all it happened on Holloween. I had taken my duaghter and some of her friends out for trick or treat. We lived in the country so this ment driving them from house to house. We had been out for about 1 hour and were in the last small subdisivion when all of a sudden I had no idea of where we were or how to get home.

I had to ask my daughter how to get home even thouhg we were only 1/2 mile from our house and on roads I have been on thousands of times. The driections to get home were 2 right turns and then a left into our driveway. While I had been having trouble with my vision and balance before this, it was this incident that made me realize something was going wrong and I needed to see a doctor. Less than 1 year later I was on disabilty because of the cognitive problems.

Dennis
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667078 tn?1316000935
Oh here is a Halloween story I just remembered. When I was a commercial air conditioning technician I was working on a shopping center one Halloween day.  I came down of the roof of a drug store with grease on my face. This woman came up to me and said "That is a great costume. It is so authentic, even wearing your husband's uniform with Alex on it and the tool belt". I said "I am not dressed up I am working on the a/c unit."

I will be waiting for the Great Pumpkin Tonight. I love the kids dressed up.
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704043 tn?1298056844
lol  where did i put them PURPLE GLOVES!!   - i like purple!-  anyway  boy was feeling so bad was workong so i go to the dr.  they seem to think i have a cold give me antibiotics-set me up 4  mri .- i wait  month goes by get little better but far from good.  i go back 2  dr..... should i tell this........ well he goes they didnt call you  no  i asked-  why???   well u  have a brain tumor!!!!   what???   so  they get me in within a very short time  - oh plus the lessions were seen- they do surgery  cause it was getting 2  big! well i was going 2  back out didnot want surgery when i woke up it was already done!!  - but 2 this day-- i dont want 2  look n  mirrow!! SCAREY  !!!   My face is frozen on one side- really messed me up  but  life goes on!!!    did u  get the heebees!!!!!!   -if ya got a mirrow  ill break it!!   lol!!!    happy halloween!!!!        tick    -this is true sas 2 say...
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572651 tn?1530999357
H1N1 UPDATE for HALLOWEEN----

the news is carrying this reminder - don't share your mask with others

and

don't let the children select their own candy from your bowl ... keep their icky hands off the candy - unless you are passing out purple gloves first! LOL

They are also suggesting you not let your kids eat their candy for 6-8 hours afterwards, because that is how long it takes for the virus on that candy wrapper to die off.  

It makes me wonder what they will be saying about visiting Santa at the Mall ........


Talk about scarey and creepy!

Helpful - 0
572651 tn?1530999357
JJ- I heard horror tales and have actually seen pictures from a friend of what some of the hospital wards look like so that gives me some history to add to my mental images of your story.  The undressing in front of everyone takes the cake - two UK friends have both had that experience as well.  You paint quite the scary story - so glad you survived your Night of Terror


Nancy, Unlike the Red Hat Society, I think there must be a secret organization of purple gloved medical workers.  I had to really smile at yours because it reminds me at my initial neuro meeting, my neuro gave my husband one of those purple gloves to amuse himself with, as a joke!  DH hung on to that glove for several days.

Q- you got to love those little ones - they are my favorite doorbell-ringers.  the further down I have to bend to see them, the more I like them!  

Helpful - 0
147426 tn?1317265632
Can I tell a fun Halloween story?

When I was in private practive in a small town it was a big deal to take the kids Trick or Treating to the doc's house.  One night I answered my door to find one of my little 2 year-olds on my porch all dressed like a clown.  His mom was a couple feet behind him all scrunched down.  He stood there staring solemnly yup at me.  She kept whispering to her, "What do you say? What do you say?"

Finally he said it, "FINE!"  and he got his candy.  Life must be very confusing sometimes.

:))   :))

Q
Helpful - 0
969286 tn?1253760391
It wasn't quite Halloween, only September:   The Purple Glove Lady  

I'm at the hospital for a biopsy (mammogram had looked like a bar-code), in first for a wire-localization (using that mammogram machine) to determine what/where exactly to biopsy, before being wheeled into surgery.  There are 4 of us in the room - myself, a radiologist sitting across the room, & 2 technicians - both wearing purple gloves, only one of whom becomes The Purple Glove Lady.  

4 attempts - 9 mammos later - they haven't been able to put a wire in _a_ tumor.  Take a break - leave me in the room with my least favorite of the 3, the one who kept bleating out "She moved!!"  No, I didn't.  The radiologist went to confer with his partners and I have no idea where The Purple Glove Lady went.  She was the nicest to me during the 9 mammos as she was having to manipulate me and the glass plate thingys.  

I sit there, having gone quiet & into my 'observing' mode, replaying everything in my head.  Radiologist came back, 'they' decided to scrap the biopsy, would refer me to a radiologist over in Boston who did his own biopsys (by-passing  my surgeon), didn't know his name right then but would get it to me.  

The Purple Glove Lady returns.  I have no idea where she went all this time or what she did, what all she touched with those purple gloves.  I'm _really_ into my 'observing' mode, can't speak - it's as though I'm not really there, but am hovering above and behind that body in the chair - 'observing'.  

Radiologist tells The Purple Glove Lady to remove the bandage, remove the (last) wire, clean me up, & put on a bandaid.  While he's talking, The Purple Glove Lady proceeds to prop up one foot on the chair between us and retie her sneaker - probably the same sneakers she wore in to work, the same sneakers she walked around her house in and out to the car and into the hospital (probably had a dog & cat at home too) - _and_ still wearing   p u r p l e   g l o v e s   - I presume, the same purple gloves.  

She comes over to remove the bandage, the wire, clean me up, & apply a bandaid.  I still can't speak, even while I have certainly made Mental Notes of all I have 'observed' during this time.  I actually sat there and let her do it - but, wait, that wasn't 'me' there in that chair.  'I' am hovering above & behind - 'observing'.  

She is forever in my mind as The Purple Glove Lady.  

Just why do health-care people wear those latex gloves anyway?  
Whom are they protecting?  
Helpful - 0
987762 tn?1671273328
COMMUNITY LEADER
LOL!!!!! good for the sole to let it out and have a laugh but i've leant that hospitals are scary places, my 2008 big episode put me off seeking help this year, you live and learn pride and dignity takes second place but oohhhhh it still makes me get the shivers when i think about it.

One night during last years episode, I went to bed early because my ribs were so tight i couldn't stand straight with the invisible man standing on my back, thought sleep would be the best medicine. I woke up, took one step and doubled over with the most intense pain ive ever in my life experienced, i even wet my self with the shock of it, natural child birth was a doddle in comparison. Silly me thought i just need a coffee and i'll be right, it took me half an hour to get to the kitchen, wave after wave of bone crushing pain, the entire (front to back) left side of my rid cage was squeezing the life out of me.  I called my mum, as any good daughter does when they think they're having a heart attack, all i said was i'm calling an ambulance and then another spasm hit and i screaming and moaning, she panicked and raced over, only to find me frozen in place hanging onto the kitchen bench to scared to move, terrified every time another wave hit me. I'm the gost!!!!

Over an hour later, my brother in a total autism melt down by the time the ambulance finally shows up, well it wasn't an ambulance really just a transport unit, they only usually transfer patients from a nursing home to hospital for none emergency appts, the real paramedics must of been busy lol. I'm still screaming in the kitchen (neighbours are now starting to venture into the street to find out whats going on), brother in a Autism flap, mother in a bipolar flap and the none ambulance guy isnt qualified to give me a bandaid so he's appologising and yelling at the dispatcher. I apparently passed out on the way because they couldn't get a response out of me and i'd lost all colour, they dont have anyone in the back with the patient in these units so i was just yelled at until i answered, good job it wasn't a heart attack hey!

I finally get to the emergency dept and i'm put between 2 very very old men with uncontrollable gastro (poor guys) more old people coming in due to food poisoning at the nursing home. Nurse no feelings tells me to strip whilst she gets a gown, NO WAY am i getting nakid whilst i'm helpless in front of anyone, let alone a room full of men, mum barrels through the room and comes to my rescue, i'm holding back the screams because people are staring, so im now grunting like i'm giving birth, eyes popping out of my head in pain, white as a gost, hair like a birds nest because i'd just got out of bed when this started. My hair is past my butt and i must of looked like a bag lady, i admit it wasnt one of my finest moments lol

Blood tests, xrays and then Nurse no feelings tells me i have to go and wait in the waiting room because they need the bed, id been there hours and still NO pain relief, my entire family had perched themselves at the doors so everytime they opened they could see me. I hadn't even seen a dr yet, mum goes off her head and a 12 year old dr comes over and says we cant give you anything for the pain because we dont know whats causing it and walks off. I end up sitting on someone elses bed whilst that person is going for an xray, Nurse no feelings says your white count is through the roof your fighting a pretty nausty virus, doesnt look like you've brocken your ribs, could have a hair line thats not seen easily but it looks like your just having muscle spasms. You can go home, but go see your usual dr, i'm so out of there, i would of walked out with all the needle thingys sticking out of me if i could of actually stood up unaided.

So i walked out, painfully walking fully supported by my mum and exhusband, still screaming when i couldn't help it, pride and dignity left behind, and no faith in that hospital. To this day i still think they thought i was a druggy looking for pain meds, some of the comments i over heard makes me think thats why they just let me suffer!!!

Looking back i dont know if that fits the criteria of the thread, but it was truely frightening and creepy needing help and not actually getting any.

Cheers........JJ

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667078 tn?1316000935
I think its funny now especially his sweet sing song voice as he is telling me this. He was a pediatric Neurologist. LOL
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572651 tn?1530999357
Alex, you have me wanting to scream in fright, and if anyone shows up dressed in doctor clothes tomorrow night, I might slam the door on them!  No way do I want to take a chance and encounter your first neuro.  LOL

Karen fortunately lightened the mood with making me laugh.  I'll sure be thinking of you if I feel something brush against me tomorrow night.  Funny, but I get that sensation on my arms too, but always figured it was some supernatural force and not just my MS!  :-)



Helpful - 0
562511 tn?1285904160
This is my creepy crawly story, post diagnosis while feeling absolutely horrible.  My attitude was this MS stuff is not going to stop me from anything.  So off to a show in Reno with my not-so DH, since divorced.

For weeks I was having bizarre sensory things going on.  On a constant basis, I had the sensations of a large soft paint brush swiping my skin with alternating hot and cold sensations.  Also had banding type feelings in my arms.  After several weeks of this I became good at ignoring them.  

The music and crowd were very loud.  The waiter was trying to get my attention and was tapping me on the shoulder repeatedly.  My husband was grabbing my arm with a little squeeze.  All of which I was ignoring because it felt like business as usual in my own little creepy-crawly-squeezy world.

Happy Halloween.  It is so much fun passing out candy to the little ones.  
  
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667078 tn?1316000935
My worst night mare was going to my first Neurologist. I did not know why my Doctor sent me or what a Neurologist even was. He did a simple Neurological exam.

Then he sat down and in a happy voice said " Well you have one of two things that will kill you and we can do nothing to stop either. It would be good to do an MRI  and find out which one. It is either an AVM and one day, he snapped his fingers you are dead. or a malformation of the brain stem. One day when you are having surgery they tilt your head back to tube you and bam you are brain dead. "  

After the MRI he called me and said " I avoided calling you I hate to give people bad news. Four Neurologists have looked at your MRI and you have MS. You need an LP to confirm it". He said "I am closing my office and leaving town come get your records."

Alex
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572651 tn?1530999357
I figure there should be more spirited discussion here, so bumping this up before it hits page 2!
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572651 tn?1530999357
My worst nightmare right now is having to go through a call center to contact my doctor's staff.  Some phone bank, somewhere in the hospital is handling all of the phone calls.  

The most irritating music and commercial for bariatic surgery plays over and over while I wait to speak to a live person.  I think it is giving me the subliminal message that I need to loose weight.

The only thing that would be worse is if the phones had been outsourced overseas!

Helpful - 0
1040373 tn?1273687488
Back before I had health insurance and was paying for doctor visits out-of-pocket, I saw one GP for numbness. I asked him if it could be MS and he kind of cocked his head and said "well.....we could test you for MS but it's very expensive and you probably couldn't afford it. But come back when you have trouble swallowing!" and left the room in a hurry.

Also, when I had my EMG done by one neuro he spent about 1 minute on my arm, stated there was no evidence of nerve damage and opened the door to leave. I struggled to sit up without exposing myself through that stupid robe and with tears in my eyes said "well what could it be then?" and he barked "this is not a consultation!" all in front of a nice family that was walking in the hallway. I dressed and showed myself out. The worst part is, they tried to make me go back to him. I was like uh-uh-no-way-no-how!

It's amazing how many d-bag doctors are out there. You wonder why they chose this career in the first place.
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1056851 tn?1318720978
Ya mine was Dec 31,1999 woke up and couldn't feel a thing from the neck down or move....went to the hospital they didn't let me leave (sort of like a haunted mansion).  Hospital was full i spent a week in the ER.  Finally got a room for 2 weeks.  I was hooked up to steroids so i looked and acted like frankenstein.  And everytime i wanted to go out for a smoke this crreepy nurse would follow me until one day i asked what her problem was.  She said she wanted to make sure i didn't "escape", because some people do weird things when they are first  diagnosed.
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405614 tn?1329144114
Well, you know how in those scary movies, you think "don't go into that basement!  There's a monster there!"  We are all too smart to go into a dark basement when spooky music is playing, right?

Welll, I picked my first neurologist, get this, because he'd seen and been nice to my friend's 87 year old mother. I didn't know how to find one, other than blindly picking one from my provider directory...  The receptionist said that all their neurologist's worked with MS patients.

I go to his office, shake his hand (handsome man), and start to tell him my concerns.  He sniffed at them, dismissed them, then popped my MRI into his computer, and proceeded to belittle everything the neuro-radiologist had said (most likely to be ms) . He exclaimed and declaimed like I wasn't there,

He proceeded to tell me that he didn't think I had anything to worry about, but if I wanted to come back in a year for a follow-up MRI, if it would make me feel better.  

His chart notes said that I had brain atrophy.  (I actually have either a arachnoid cyst or a mega cisterna magna; radiology reports differ).

Scary how unsuspecting limbolanders can still wander into his office, expecting help and getting nada.

I'm sitting here waiting for my first shipment of Avonex to arrive, 20 months later...
Helpful - 0
923105 tn?1341827649
LOL.   You go first :))))

Debs xxxxx
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