Page 5 of 17

not happy

Posted: Wed Feb 11, 2009 9:36 pm
by 71jules
Hi everyone, just spoke to the hospital and looks like the MRI won't be done until April. Waiting and waiting is so hard and I am not getting any better and if fact the stress is taking it's toll a headache for the last 7 days and I can't shift it with pain killers no matter how strong.
My lips are nearly 24/7 numb and I am sick of biting my tongue or cheek.
Balance is shocking and speech embarrasing.
Have trouble even reading.
I don't know how to deal with this and feel so drained.........

Thanks for listening guys.


Posted: Wed Feb 11, 2009 10:19 pm
by 71jules
Hi again

Jimmylegs I am unsure if they checked my folic acid but maybe it is done when they request a full blood count.

I thought the dr was rather rude in leaving the door open during the consultation when I was emotional and giving him the low down on all the symptoms. He only shut it when he checked my reflexes and poked me with a pin everywhere, which I didn't cope with due to needle phobia. Even though he wasn't piercing the skin I got frightened and he acted as though I was a pathetic girl.
By the way he said the tests he did which were not many just what I mentioned came up all normal so great sign.
I was not at all convinced due to the fact I am the one living these symptoms every day not him. I was not affected at all that morning when I saw him. I definitely would not say I am less worried about an MS diagnosis just because his little set of tests in the room for 5 minutes were normal range. Oh, gosh, I have requested a new Neuro........
MRI getting done in April and still no call on the blood work, does that mean nothing showed up? Not necessarily I would say due to how slack these doctors can be.

Bright note, holiday in 3 and half weeks to Melbourne/Victoria back to my home area of the mornington peninsula. Shopping and food, oh yum pizza here I come, and steamed dimsims with soya sauce and flake (fish) down there to die for and these pastries with fresh cream and strawberry icing...............

Oh, guys thanks so much again can't say it enough.

Jules :? :roll: :)

Oh, man I am having trouble thinking and writing and making sense to myself. I have been staying away from people because of this.
I think I am coming across as though I have been drinking. I asked for white sugar the other day at maccas. Come on Julie, white sugar? Ok I told myself you can buy brown so maybe it didn't sound that bad.

I will post this in my other area of the site too guys.

Thanks again

Posted: Thu Feb 12, 2009 4:57 am
by jimmylegs
sorry to hear you're havin a bad time of it jules - hope you enjoy that vacay sounds like you are planning to :)

do. not. assume no news is good news with doctors and bloodwork!

flat white, white sugar, anyone could have mixed that up jules ;D hehe

Posted: Thu Feb 12, 2009 7:04 am
by Needled
Hi Jules, You know I’m with you on the needle thing. In the “everyone’s different” category, though, my best friend has the same kind of trauma with swallowing pills that I have with injections. Go figure.
jimmylegs is SO right about not assuming no news is good news. I found out I had MS from the girl who called to set up my solumedrol treatment. I was waiting by the phone for the neuro to call with the MRI results, but before I got that call, the lab tech calls and says “How long have you had MS?” Really, really long silence on my end of the phone. I said “I didn’t know I did.” I don’t know who felt worse, her or me. As it turns out, the neuro was called out of the office on an emergency and couldn’t get to me before the lab. I called his office every hour on the hour during that day, and the people I talked to kept saying, “I’m sure he would have told you if you MS. Something like that wouldn’t slip through the cracks.” So, with that experience under my belt, I have to try really hard not to spread my bad vibes about the flow of medical information. When someone says, “They’ll call and let you know if it’s important,” I have to take a deep breath and stop myself from making snotty comments. Last time I checked, an MS diagnosis was pretty important. The moral of the story? Be your own best advocate, ask questions, get answers, and call and check on everything until you’re satisfied. Sure, most people think I’m paranoid, but so what?
Anyway, enjoy your vacation and try to take a break from it as much as you can. We’re all pulling for you.


Posted: Thu Feb 12, 2009 6:52 pm
by 71jules
Hi Needled, I can't imagine how you felt when you got that news via the phone and the news being given as though you know you had MS. Sends shivers down my spine. I am so sorry this happened to you.

I am a very strong willed person and yes at this stage thinking the worse but hey have good reason to be doing that unfortunately. I have requested a change of doctor and will ring next week to see if anything turned up in the blood work too.

Thanking you and jimmylegs and everyone else who is posting and helping me through this.

I am looking forward to the holiday and it will do the family a world of good. The ony neg of this trip will be the devastation of the bushfires and we have had to cancel one of our day trips to Healsville due to the evacuation of the people there because of another fire threat. Plenty more to do though. The weather in Melbourne is exactly four season in one day.......... You never know what you will get, maybe 32 degress maybe 20 degrees the next.

I will be posting before I go and keeping in touch so you will hear from me soon I am sure.

Hugs to you all.



Posted: Sat Feb 14, 2009 3:15 am
by 71jules
Hi did anyone have inflammation showing from their bloodwork. I have had something elevated which pointed to inflammation.

I am trying to be prepared for the outcome, not looking for things but the more I can remember to tell the new Neuro the better I suppose.

Thanks again


Posted: Sat Feb 14, 2009 4:15 pm
by jimmylegs
yea they'll be looking for inflammation. you can fight that.

I know it's hard, but please try to relax...

Posted: Sat Feb 14, 2009 4:29 pm
by Xenu may not even have MS.

In fact, statistical odds say you probably don't.

But even if you do, it will be OK.

I promise.

Hang in there.

Re: inflammation

Posted: Sat Feb 14, 2009 4:30 pm
by Xenu
71jules wrote:Hi did anyone have inflammation showing from their bloodwork. I have had something elevated which pointed to inflammation.
Inflammation can mean a lot of things.

What's crucial in the diagnosis of MS is a lumbar puncture (i.e. - to see what is going on with your spinal fluid) and a brain/spine MRI with and without contrast. Until you have those tests, plus a general neurological exam done, the differential for the symptoms you are experiencing is huge.


Posted: Sat Feb 14, 2009 4:35 pm
by 71jules
Hi guys, thanks for that.

I suppose I am trying to give the Neuro as much info as possible and with my list of about 10 ms symptoms and the fact past bloodwork did show inflammation I just want to know they are taking this seriously.

I have as I have said lost some faith in doctors over the years feeling like I was continually hitting up against a brick wall. No doctor or specialist can find what is wrong.
It was myself, a friend and brother who thought the symptoms were possibly that of MS. The GP strongly agreed and is very concerned. The new Neuro will become the old because I felt the compassion and care isn't there for me. Not really a good bedside manner.

Will be keeping you all updated.

Take care all of you.


Oh, what a bad night.........

Posted: Mon Feb 16, 2009 5:05 am
by 71jules
:( Hi everyone, sorry but I really feel I have to post this for your support.
Today my arm became weaker than normal and as it is my hubbie has to cut up my meat which upsets me. While eating dinner with my beautiful family which includes hubbie and our two children aged 12 and15, my chicken had been all cut up, I started to struggle with getting the fork to go into the chicken bits (breast meat cut up) and getting the fork to my mouth. My hand and arm were so so weak. My other hand was completely numb. I began crying and broke down in front of our children.
I feel so guilty as I try so hard to not have them see me cry.
My emotions were running so high and I had no control.
I know they understand I am not well and they gave me a cuddle and left me with Alex my hubbie, their dad so he could hold me tight.
We then all went out for a drive and got an icecream.
:( Sorry guys but I know you will all understand where I was coming from.

:roll: Some days are just tougher than others.
Keep smiling as I will try to do the same. :D Jules

Posted: Mon Feb 16, 2009 5:55 am
by lionheart
Jules, you're having a hard time right now, no doubt. All this waiting is absolutely killing. I understand. I am like that, I always want to know, no matter positive or negative just to be in the know.

But I think perhaps you should calm down a little bit, by focusing your attn on sth else, even a problem, just smth else. Many times by concentrating on an illness we get sick for real. And vice versa. You know, the power of the mind, positive thinking, etc. I believe in that.

It's not certain yet yours is ms, so think it's not and live like you're fine, just minor disturbances. can you do that?

will try harder

Posted: Mon Feb 16, 2009 2:10 pm
by 71jules
Hi lionheart, I thank you for your positive support but honestly it is so hard and I am unable to do it even with a holiday coming up.
If the symptoms backed off instead of getting worse it may be easier.

I know too if I had not have been through so much in the last eight years since losing my mum to suicide, my positive outlook may be a bit better than it is.
My health was starting to get bad a year before my mum passed away not just since she did.

Having positive things in life is important and the most positive are my family and then we try and add things like a holiday, shopping, coffee and cake somewhere nice by water. Different things help but those days when my health is bad such as last night, the positives are hard to pull.

This site is where I have found so much strength though and even if the outcome is not MS, I will have learnt a lot about positive outlooks and met a lot of compasionate lovely people who care so much.

Thanks again

Keep smiling. :D


just sending a hug to all

Posted: Tue Feb 17, 2009 5:15 pm
by 71jules
:D Hi everyone.

Just sending a hug to you all for your support you are giving to me.


Re: just sending a hug to all

Posted: Tue Feb 17, 2009 5:53 pm
by flautenmusik
71jules wrote::D Hi everyone.

Just sending a hug to you all for your support you are giving to me.

Isn't so great to find a place where everyone truly does care about everyone else? :D