PLEASE HELP I IAM SO SCARED

71jules · Post by **71jules** » Wed May 27, 2009 8:02 pm

Hi everyone just letting you know I am still in the loop here on this site.
I have posted now under Jules

Take care

Hugs
Jules

71jules · Post by **71jules** » Mon Jun 01, 2009 4:18 am

Just a little question.
Does anybody have difficulty walking when they are on an incline slight even or uneven ground?
Just like to know what to mention and what not to bother with when I go back to the Neuro.

I have definitely noticed a decrease in symptoms since the cold weather has come in.
I am talking far better, walking much better and just overall much better.

I am wondering could this be a hint to the Dr that I do possibly have MS even thought the MRI showed no real lesions.

I will continue to tell as much as possible and hope one day they will discover what is wrong with me no matter how long it takes.

Whether it be 1,2,3 or 10 Doctors later I will get there in the end.

Hugs
Jules

scorpion · Post by **scorpion** » Mon Jun 01, 2009 6:48 am

I would just tell the doctor excatly what you just told us! Perfect! Overall Jules, if you do have MS, having a negative MRI at initial presentation can be a good sign. This MAY mean that you will have a milder disease course. Good luck Jewels and stay in touch.

71jules · Post by **71jules** » Mon Jun 01, 2009 6:00 pm

Hi Scorpian

Thanking you for that advice I will do exactly that, tell everything.

Take care and thank you.

71jules · Post by **71jules** » Tue Jun 09, 2009 11:45 pm

Hi again

We got the episode of Oprah today with the I think actor that has MS and he was up front and spoke to Dr Oz about what daily life with MS is like.
I was in tears not only because I felt for him but it was like listening so me in some way with one comment being, if only I forget it for just one day. Well even though I have not got a diagnosis with the symptoms I have daily, I have said that on several occasions to my hubbie.
When he said it was like the brain wasn't talking to the legs when he wanted to walk, those words exactly is what I said to my Neuro.
I know you guys got that episode a while ago as I remember reading about it.
It got the better of me and I did switch it off as I was already having a day of it with my symptoms and was on a downer.
Even though my symptoms have backed off today I had numb lips and rubbery hands particularly the left and the balance was off and my head feeling very weird.
Cold here at the moment in Qld, Australia, a bit colder than normal.
Doesn't help the hands.
Take care guys, just keeping in contact.

queenie · Post by **queenie** » Tue Jun 16, 2009 5:50 pm

Hey, Jules. I have had symptoms my entire adult life, but started going to docs looking for a dx after my 2nd baby was born. I was only dx 4 years ago, and that baby is now 20.
I managed to raise 3 kids, 22, 20 and 17. After being dx 4 years ago, I cried every day for about a year, and most days for the 2nd year.
I have since adjusted. Knowing is better than not knowing. Everybody has some shit to deal with. I often think it is lucky that we DON'T know what is in store for us, or we would through ourselves on the sword!

Learn as much as you can. Get on a tx you are comfortable with, and push yourself to live up to the best that you can!
That is all ANY of us can do, ms or no ms.
We are here for you.

71jules · Post by **71jules** » Wed Jun 17, 2009 3:59 pm

Hi and thank you for replying and your words of encouragement.

I am sorry it took you so long to get DX, do you mind me asking at what stage was MS suspected and whether you were sent for tests and if what ones?
I have had an MRI done but showed no real clues, I am awaiting an EEG.
I also am getting a second opinion partly due to me not be confident or impressed with the current Neuro. She does know it is something to do with brain.
I currently have a list of around 10 symptoms or more.
Some worse than others.
Take care and thank you once more for taking the time to write.

peekaboo · Post by **peekaboo** » Wed Jun 17, 2009 5:26 pm

Jules -

I am sorry i have been caught up w/my own stuff. I wish you huge HUGS

Wobbly another character on TIMS always ends his post with

STAY STRONG

ditto for me

catfreak · Post by **catfreak** » Wed Jun 17, 2009 6:51 pm

Hey Jules,

Hope you are doing good as you can be with all the waiting!

Please let me know how things are going with everything when you get a chance.

I go back on Monday for MRI, Tysabri treatment and then see the Neuro. Hoping for a good report.

Hugs to you!

Cat

71jules · Post by **71jules** » Fri Jun 19, 2009 1:42 am

I just sat here replying and pressed submit and the computer played up, gggrrrrr.
I have to retype it now.

Peekaboo lovely to hear from you and Catfreak as always nice to hear from you also.

Things have been bit rough here with me needing help once again to walk, unable to take my own weight and legs didn't want to walk.
Fell twice.
My darling hubbie had to help me walk, I was like a floppy ragdoll.
Trouble talking and comprehending too and then pain very sharp and also burning like a flame in my toe.

Bright note, it's my birthday Sunday and we are going out for the whole day including breakfast, lunch and dinner which will be pizza.
My hubbie is taking me out tomorrow to look at a diamond ring with a heart apparently.

You take care all of you,
Jules

peekaboo · Post by **peekaboo** » Fri Jun 19, 2009 5:10 am

Happy Birthday....have a grand day Your hubby sounds like a terrific guy and will always be there for you.

Holly

71jules · Post by **71jules** » Fri Jun 19, 2009 5:52 am

Hi Holly

Thanking you so so much and yes he is a one in a million.

Hugs

Jules

Sharon · Post by **Sharon** » Fri Jun 19, 2009 9:36 am

Jules - have a Happy Birthday - enjoy the moment!

Sharon

71jules · Post by **71jules** » Sun Jun 21, 2009 8:11 pm

Hi Sharon

Thanking you so much.

I had a lovely day and was spoilt rotten, I got a gorgeous watch GUESS of course and a very very cute Bearington Bear and a candle holder.
We went out for the entire day, had breaky, lunch and dinner out.
We saw wild dolphins in the surf too so it was very special.

The only negative was that I came so close to passing out and lost my balance and was half not with it for a while.

Hugs
Jules

71jules · Post by **71jules** » Tue Jun 30, 2009 4:56 pm

Hi again

Just an update for you.

I was lucky enough to have received a cancellation to go and get the EEG done on Monday that just went. I will receive the results at another cancellation appointment on Wednesday next week.

Still having symptoms but not as bad.

Cindi, I hope you are well as I haven't heard from you for a little while.
Please let me know your're ok?

I will be in touch again soon, been going through a lot of drama with my ear having to get it drained by a machine four times OUCH!!! Back again tomorrow night to get done again.

Needled you have been in thoughts too lately.

Hugs
Jules