PLEASE HELP I IAM SO SCARED

cheerleader · Post by **cheerleader** » Thu Apr 09, 2009 9:17 am

Lyon wrote:
71jules wrote: Interested to know how they tell you in America in particular due to the majority of you lovely people living there.
My wife's diagnosing neuro was a young black lady who had tears streaming down her cheeks when she broke the news to us. That made me realize that they couldn't pay me enough to be a neuro and have to spend my days giving people bad news.

Interesting, Bob....our GP is a terrific doctor, and happens to be an African American woman. She and my husband's neuro, also a woman, teared up when giving my husband his diagnosis. They also both hugged him, and told him that his future was not written. They were very positive in their empathy, compassion and support. I agree with you....I'd never want the job of giving a diagnosis to a patient and their family. Tough gig-
Jules....your future is not written. Try to stay in the present moment. This is all we have. Wishing you a peaceful heart today-
AC

Bubba · Post by **Bubba** » Thu Apr 09, 2009 9:44 am

Well my neuro came in my hospital room (on his way home) at the end of the day. He said "after reviewing the MRI, it is my dx that you have Multiple Sclerosis, call my office in ten 10 days and make an appointment to see me so we can medicate you" Bye..... Just that fast, and without emotion, and then he was gone....
He then forgot about me, cause I called his office in 10 days, and he wanted to know why I was calling. Once I established our "relationship" he made me an appointment. The day of my visit, He walked in my room, sat down and looked at some test results. Then turned to me and said you have MS, these are the choices of medicine to treat the symptoms; pick one. That was the extent of my visit.

Jules, is it because of your "national health care system" that you have to wait this long to get these tests? I went to the hospital, got three MRI's, Three CT's, three sonograms, and a spinal tap, all in two days???? I dont understand the hold up?

catfreak · Post by **catfreak** » Thu Apr 09, 2009 10:37 am

Jules,

Chris is right. Go in there knowing you have MS and then when you don't you can celebrate.

I sent my MRI's Cat Scan's and Xray's to my Neuro before my Appt and the girl on the phone said your appt is 3 months away (blah, blah, blah) I said 3 MONTHS!!!! Then she said - unless we see something urgent on your films- then we will call you in immediatly. Guess what? They called a few days later to tell me I needed to come in.

My neuro is very compassionate. His Mom died from complications of MS and he has dedicated himself to fighting MS. When I finally got my DX I knew from the look on his face there was no turning back. He was more upset than I was, for me it was relief and now lets get on with the program, move forward and go from here.

We are here for you!

Cat

Karazhan · Post by **Karazhan** » Thu Apr 09, 2009 12:52 pm

My neruo is a retired Colonel, he's on the board of the NMS Foundation and leads a MS research team at University of Louisville. I find him to be a bit intimidating and WAY to busy for me.(I love his assistant though, she's a sweet German lady named Elka...love her accent too

)
My tests were all done over a 3 day hospital stay so 2 weeks later I get to finally meet Dr. Colonel. He says "Looks like MS, I want you to review these packets and choose which treatment you feel most comfortable with and come back in 3 months"
<GASP>
<GASP?
I'm sure he said more than that in our 15 minutes together but I was hung up on one phrase "LOOKS like MS"
After reviewing the treatment options I'm thinking "there's no way I'm doing this based on LOOKS like MS"
I called Elka to let her know that I've decided to forego treatment at this time since "Looks like MS" isn't quite the same as "you have MS"
She replied in a motherly tone "Do you want to wake up tomorrow and not be able to walk?? you have MS, take the medication!" So why was Dr. Colonel reluctant to just come out and say it?

chrishasms · Post by **chrishasms** » Thu Apr 09, 2009 1:19 pm

Dr. Eric Hammerburg of Denver, CO told me I needed to watch my weight and to make sure I empty my bladder. Then he reached up to a Folder for Avonex, told me to contact them with the RX he was giving me. Then he told me he wanted to see me in one year. I asked him if it was a death sentence and he said very simply "no." I then said, "Can I have kids?" Then he rolled his eyes at me and said, "no. Anything else?" I said ,"no" and left.

I never saw the man again.

Lyon · Post by **Lyon** » Thu Apr 09, 2009 1:30 pm

71jules · Post by **71jules** » Thu Apr 09, 2009 4:26 pm

Hi again and thank you everyone for your stories.
I found it uplifting hearing about the compassion and wish I could have a compassinate doctor and hope to be given a new Neuro when I finally go back. I am going through this under the public system in Australia so what they say goes, unfortunately I cannot ask for an earlier appointment.
Again I cannot believe the way they do this, ask you to have an MRI and then wait, if the phone rings before your appointment well whats the point for going in if I know you have bad news? I know I will have to but I would need time to get there as my foot would go one step forward and three steps back.
I always thought they portrayed the American Medical System so much worse than here but I am starting to wonder.
Thanks again.
I appreciate your comments.

Jules

catfreak · Post by **catfreak** » Fri Apr 10, 2009 7:39 pm

Jules,

I think our system is better in the USA. For now anyway.

You take care!

CAT

71jules · Post by **71jules** » Sat Apr 11, 2009 7:19 pm

Thank you for the hug.

Another question if I may anyone, I am getting involuntary movements of my left fingers very small but also a feeling of jitteryness all over my body, not very nice.
I am going to bandage my hand up so I don't see it or feel it hopefully, it is distressing me a little on top of everything else.

Hugs

Jules

HAPPY EASTER TO YOU ALL............................

catfreak · Post by **catfreak** » Sun Apr 12, 2009 6:06 am

Hi Jules,

I get involuntary movement in my right hand all the time. Which can be bad when you work on a computer and use a mouse with my right hand. I have deleted lots of stuff and hit enter by mistake a lot Oh, and mispell words. It's my middle finger on my right hand.

Hope you are having a Happy Easter too! Hugs from Mississippi!

CAT

71jules · Post by **71jules** » Mon Apr 13, 2009 10:25 pm

Hi again and thank you so much, we had a lovely Easter and hope you did too.

OMG, this time next week is the MRI scan and I am losing weight due to the stress of this all.
I know I will get through it and I will have my husbane right there holding my hand up until they take me to put me to sleep.

Guys, I will let you know when I know something but fingers crossed I get answers sooner than what I think I will.

Thanks again for your kind thoughts and support.

Chat soon.

Jules

scotty · Post by **scotty** » Tue Apr 14, 2009 2:43 am

Hi Jules,
Remember i told you i was having a telemetry test in Brissie. The test came back clear, no brain activity with my seizure like symptoms. So guess what, the neuro that had ordered the test phoned and basically gave me the boot. Her secretary had the cheek to tell me there was nothing they could do for me and that they didn't want to waste my time by returning to see her and that my only course of action was to see the shrink. Funny thing was that i had seen him the previous day and he had conferred with 4 of his colleagues about me and they all agreed that i needed a thorough medical investigation. Lucky for me that i did not hold much faith in her and so i had booked the MRI and the other 2 Neuros as back up plans. Not long to go now for the MRI.

Keep your chin up,
Scotty.

71jules · Post by **71jules** » Tue Apr 14, 2009 9:26 pm

Scotty that is unbelievable and it must have made you upset.

Glad you are proactive in seeking someone that will listen.
I will try and keep my chin up but at the moment would need a fence post to do so lol.

A question please to anyone who has experienced an MS hug.
If I am diagnosed with MS then I am curious as to whether I have experienced mild ms hugs and one major.
Has anyone had one so bad that they started to vomit and was in great deal of pain and doubled over in foetal position?

Itching too, should I believe maybe unexplained itching should be mentioned to the doctors?

Thanks guys.

Hugs
Jules

scotty · Post by **scotty** » Wed Apr 15, 2009 2:12 am

Jules,
If it is MS that i have, then yes i believe that i have had the MS hug. The first time that i had it i was in excruciating pain it felt like i was being squashed around the chest region. I thought that i was having a heart attack and was screaming in agony. At times i actually passed out and was not breathing. The whole ordeal lasted for quite some time on and off for probably an hour or so and took 20mg of valium to calm me. That was probably the worst that i have had and it was actually what started this relapse. I have had too many squashing chest sessions to mention but some of them if they are bad enough i will have a really chesty cough and have coughed up phlegm. And yes i was also doubled over in the feotal position. I actually had a few of these while in hospital in Brissy and so they should be caught on camera. We have also videoed some smaller sessions at home so if you are interested i could mail you a DVD. A lot of the smaller sessions are like what i would describe as grippies. It is as though being grabbed around the chest and then let go, at times this can be quite fast. I have also had it creep into my neck.

As for the itching, i believe that it is also related. Ever since i had one of my seizure like episodes including the Hug, my face has been itchy on and off, especially around the jaw and chin. At times my head is also itchy.

Hope this helps, but you probably want confirmation from someone who is diagnosed.

Talk soon,
Scotty.

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PLEASE HELP I IAM SO SCARED

got the boot from Neuro

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