PLEASE HELP I IAM SO SCARED

71jules · Post by **71jules** » Wed Apr 15, 2009 4:48 am

Hi again,

Thanks scotty for that post and the offer of the dvd, I think it would upset me though seeing you suffering even though I have never met you.
In a way I feel so much comfort from you because you are in the same region of Queensland and so so close to getting a diagnosis at the same time as me. What hospital is it you go too, sorry I forgot.

I get itching and have had itching for about 3 years but they find nothing to explain it. Last night I was kept awake because of it. Foot, shoulders and head off and on and off and on. No bites, no rash nothing.

The MS hug I think possibly was what I had in Jan of 08 where it was a very weird squeezing tight sensation and very painful and I was in the foetal position all night knowing an ambulance probably should have been called and then the morning when my hubbie looked at me and then I started vomiting and then had sever stabbing pain in my side we knew we had to get to the ER. No real answers though as to what it was after they did a CT of the abdomen. They did find some extra fluid sitting in the right hand side of the pelvic area but didn't feel it would cause me so much pain. They said if it happened again get straight back in an ambulance and guess what? Yep it happened the next day but I was too scared to get back to hospital.

Gee, I wish I could just roll a dice and get an answer if six came up rather than go through all this testing and stress etc.
Needles, OMG!
Tuesday is going to be so tough on me, the fear of the cannula and the tunnel even though I will be asleep.

Thinking of you and hope you too get the answers you need like me scotty.

Good luck and keep strong.

Jules

chrishasms · Post by **chrishasms** » Wed Apr 15, 2009 6:37 am

Jules I mean this in the nicest way I promise and I hate the computer because it shows no emotion. You need to relax and just take it as it comes. About the only thing you are going to accomplish is making yourself a nervous wreck and if it is MS you are only going to make it worse because MS is very much so stress related as far as symptoms go.

Go have a drink, high colonic, or whatever it is that relaxes you and makes you stop thinking. Tuesday will come soon enough, then it will be done and you will ask "Why was I so worried?"

71jules · Post by **71jules** » Wed Apr 15, 2009 4:59 pm

Thanks and I am trying and will keep trying to get my emotions to calm down. Deep breathing, reading magazines, enjoying our childrens being home for holidays etc, trying, trying.

Thanks again.

Jules

71jules · Post by **71jules** » Thu Apr 16, 2009 4:49 am

Gee, I read back on my posts and particularly the last one and cannot believe the spelling mistakes or the writing that makes not much sense.

LOL....................

I know how to spell and if it's a word I am unsure about I put something like, probably spelt that wrong.

Anyway scotty particularly, not long now and I will take this opportunity to wish you well for MRI as I go in for mine on Tuesday morning.
Scotty love the way the hospitals here ask you to come in at 7.30am but say we won't be putting you under until 9.30am. We have to be up at 5.00am then be out the door at 6.00am to make sure we get there.
No COFFEE, no WATER, no NOTHING..............

Take care, until next time.

Hugs
Jules

71jules · Post by **71jules** » Sun Apr 19, 2009 6:49 pm

Hi guys not long now, tomorrow morning AEST my MRI is getting done under general anaesethitic.
Very very nervous and yes scared but I know it has to be done.

You might not hear from me for a little while but when I am ready I will come back and post.

Scotty good luck to you as I think yrs is on Friday.

Hugs to you all.

Jules

scorpion · Post by **scorpion** » Mon Apr 20, 2009 3:32 am

Good luck Jules. I was really nervous when I went for my first mri but like you told myself it needed to be done. Other than the funky noises the machine made I had NO problems and once I got used to the "beeps and blurps" I was fine. They will take images in 1-3 minutes increments. Every time they completed a set of imaging I would here the technician say "ok the next set will last...." and I would consider it a victory. Anyway good luck and we will wait to hear how it went!

scotty · Post by **scotty** » Mon Apr 20, 2009 4:52 am

Hi Jules,
Have been thinking of you and suppose you are a nervous wreck. Please try and be strong think of all the support from family and friends. just wanted to wish you good luck for tomorrow.
Will be thinking of you tomorrow, all the best,
Scotty.

Needled · Post by **Needled** » Mon Apr 20, 2009 5:32 am

Hi Jules, Just wanted to add my good thoughts for you tomorrow. You have a long list of people pulling for you -- if you get nervous, just think of all of us thinking of you!!
And Scotty, good luck to you, too.
N

me_x_5 · Post by **me_x_5** » Mon Apr 20, 2009 8:50 am

Thinking about you,jules!

catfreak · Post by **catfreak** » Mon Apr 20, 2009 6:04 pm

Jules,

Hugs!!!

Wondering how everything is going today. It's about 9pm here in Mississippi and noon in Austrailia. You should be done by now and I have been nervous for you all day. Please let me know how it went.

Cat

71jules · Post by **71jules** » Tue Apr 21, 2009 10:09 pm

Hi guys and thank you everyone for your thought's and well wishes, I really do appreciate it more than these words can say.

Well it was tough and I didn't pull through too well after the anaesthetic, my temp was low and I was needing oxygen for over an hour, heart monitored, on a drip

etc and there for over 7 hours.
Finally when I was able to leave, we were making our way to the car but I was struggling to walk and breathing was difficult.
My beautiful supportive hubbie tried to get me to go back into the hospital but I had, had enough.
I continued to have trouble breathing and was off balance and continued to suffer a headache even though they had put something through the canulla for that when I was in.

The hospital rang this morning to see how I was and when I told her about my problems breathing she explained it could have become a medical emergency and my hubbie was right I should have straight back in. She was very concerned and stressed how important it is if that happens again don't hesitate to get back.

That's what this phobia does, takes control and your fears over power the intelligence, I knew I should go back but the thought of it was too much and I just hoped the symptoms would go away.

Now the waiting game for the results and it's going to tough as you will all know.

Scotty I am pretty sure yours is not under GA, and is done on Friday and know you too are in my thought's and I send my best wishes to you and a hug.

Everyone please know again what it means to have this forum to turn to and the support from those who either already have the diagnosis or those that are going through the waiting game.

Hugs and thanks, I could go on and on.

Jules
xxxxxxoooooo

scotty · Post by **scotty** » Tue Apr 21, 2009 10:51 pm

Hi Jules,
Glad that part is all over for you. Sounds like it was a bit tough but you pulled through ok, so that's the main thing.

Yes mine is on Friday and i had not told them that i would need anesthetic but i cannot guarantee that i can stay still for that long as i have lots of tremmors in my left arm and sometimes my head, so i am not sure what they will do. The last MRI that i had was only of my head and without anesthetic, and from memory i was not shaking as much then as i have been lately.

Needled thank you also for your thoughts.

We'll just have to play the wait and see game now.

Good luck and thanks,
Scotty.

71jules · Post by **71jules** » Wed Apr 22, 2009 12:35 am

Hi Scotty

I will be thinking about you on Friday, I know that we will get our answers around the same time so we will be able to support each other while we are coming to terms with our diagnosis if we get the yes, you do have MS.

Please let me know how you go when you are ready and please know your experience won't be as tough as mine, I hope you know it was just because of my phobia and also the way my body doesn't cope too well with a general anaesthetic that it went so poorly.

Thanks once again.

Hugs
Jules

71jules · Post by **71jules** » Wed Apr 22, 2009 2:29 pm

Hi again

I was wondering about why it can take so long to diagnose MS. If someone who is strongly suspected of having it and undergoes an MRI of the head and spine and it failed to show any lesions then the Dr was to say (which what I am so frightened to hear when I go back, possibly) you now need to have a spinal tap. If that was to also come back negative does it clear you of MS, 100%?
Guys I am only asking so I am prepared for questions when I go back.
After reading posts about it taking years for some of you to get the diagnoses, I am so confused as to why and can it be that you can have MS but not have lesions show on the head and spine and have the spinal fluid not show anything either?

Gosh if this is true then if it is suggested I have a spinal tap

I would be thinking what's the point putting me through if it could come back negative but still be told it doesn't rule me out.
Wouldn't it be better to go to the ER next time it's at it's worst and let them to my do another MRI if it's been say 6 months or so?
Although with my symptoms worsening not weakening I can't think of waiting much longer than I have honestly.
Trouble walking with my family and seeing our children so distressed to see their Mummy unable to walk too well and needing Daddy to help her?
I hope this all makes sense because as I write it, I feel very confused and overwhelmed.

Hope to hear from someone who may be able to fill me in on this a little bit please?

Thanks so much again.

Hugs

Jules

scotty · Post by **scotty** » Wed Apr 22, 2009 3:26 pm

Jules,
What you are saying is correct. I Have had the head MRI and a spinal tap, both were clear in November (i think). So that is why i am going for the full head neck and spine and this time also with contrast.

You need to be persistant if you suspect there is anything wrong. From my experience, the ED are not going to do anything for you as it is not immediately life threatening. I have been turned away from there, unable to walk, so many times it is rediculous. The best that i got out of them was the last time when they actually kept me in for 3 days, but eventually kicked me out saying that i was under the care of a private Neuro in Brissy, so there was nothing that they could do for me. Oh and that i showed no signs of MS because all of there touchy feely tests were clear but my balance was shot and could not walk heel to toe. Psychologicol/neurological was the diagnosis.

Unfortunately the thing with MS is it, like many other illnesses, the diagnosis is a process of elimination. You can still have it but not show on the MRI. The spinal tap is also not 100% failsafe either, but they are good indicators. Remember that this is only a small percentage of the population that will come up clear and possibly still have it, but someone has to be in that bracket unfortunately and perhaps that could be us.

I know this may sound strange but have you looked at your hormone levels? When i was in Brissy last i asked what other things could be causing my symptoms, and hormones were mentioned, so perhaps an Endochronologist may be the next stop.

Remember be strong and fight for yourself. I know it is hard when you can see and feel so many things wrong with your body but the tests come up clear. I don't know who it is harder on me or my family watching, and i always think things happen for a reason, but sometimes it is difficult to work out what good could come out of this. All that i could wish for is to make a miraculous recovery and then never take good health for granted.

Anyhow take care, keep that chin up, fence post and all.

Scotty

This Is MS Multiple Sclerosis Knowledge & Support Community

PLEASE HELP I IAM SO SCARED

diagnosis question that may be able to be answered pls?