PLEASE HELP I IAM SO SCARED

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

hi again

Postby 71jules » Tue Mar 17, 2009 6:15 pm

Cheers and thanks for that.

No way no way could I have this done without being put completely under.

Will be interesting to see the reaction after the general due to the last reaction not being good at all.
It may give them another indicator this is MS.

I am very nervous and scared and I try to think positively, I will you all know how it goes and when I get the answer.

Thanks again.

Jules
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Postby catfreak » Tue Mar 17, 2009 6:51 pm

Hi Jules!

Keep thinking positive. I found it to be a relief when I was told I positively had MS. It takes the pressure off of the crazy world of not knowing. I felt like I could move on with my life and make some decisions.

I am now off of the 3 shots a week of Rebif and boy am I glad. I am feeling better everyday. My quality of life was getting worse daily but now I am feeling a little more like myself everyday. I start my Tysabri on the 26th (IV). We will see how that goes... 8O

CF
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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thank you

Postby 71jules » Tue Mar 17, 2009 7:39 pm

Hi catfreak, firstly so sorry your pepper is still missing.
I feel for you honestly as I know what it is like to have a cat go missing.
Fingers crossed he/she is being looked after by a family who thought it was a stray.
I sincerely hope pepper one day makes it back into your life.
Keep positive and never lose hope, I send you a big hug.

Secondly, I am happy things are looking brighter for you on the health side of things.

I find it weird that part of me believes I have MS due to the amount of symptoms and the other part is saying no way, that couldn't be me diagnosed with that!!
It feels like I am going crazy with split personality or something, maybe it's the heart arguing with the head or something.
I can imagine it is probably normal to have these thoughts.

Anyway glad to hear from you again.

Remain strong and keep smiling.

Hugs
Jules
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Postby whyRwehere » Tue Mar 17, 2009 11:04 pm

Sorry, this has nothing to do with the thread, but I just wanted to say to catfreak, that I thought that puss in boots was so funny in Shrek II right then...
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no worries, I agree

Postby 71jules » Tue Mar 17, 2009 11:16 pm

:D I agree! If only he was real and spoke like that too, I would love him for a pet, lol....
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Postby catfreak » Wed Mar 18, 2009 7:59 am

I love this Puss too! When I found this I just had to have it.

Pepper is still missing. We went to the Humane Society and adopted another little kitty "Flash" so Amber would have a playmate. But, TeeJay the older cat sits and stares out the window like he is looking for Pep and also makes strange noises. I think he is grieving and missing Pep a lot.

I went for 5 years being probable MS and having the emotional ups and downs of "I can't have MS and Oh crap I have MS!" This was a daily struggle for me. Like I said I don't want to have MS but it was such a relief to get the diagnosis and move on. So it is normal to have crazy feelings.

Jules, we remain strong together!

CF

Normal MS emotions: :cry: :? :x :evil: :( 8O :? :cry: :roll: :x 8O :( :x :x :x :x
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Hi

Postby 71jules » Wed Mar 18, 2009 4:00 pm

:cry: That is so sad about your Teejay sitting at the window, your probably right he will be grieving. In time he will heal but I know we never to get over things like that.

:wink: I thank you for reassurance too about my crazy thoughts, some days are tougher than others and I keep thinking, "no that couldn't be me".
I know we are not invincible though.
Hey I am a Gemini and so the split thoughts, well I'll blame that on the twins, hee hee.

I pull so much strength from your email so thank you.

Jules
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Postby nenebird » Wed Mar 18, 2009 7:38 pm

Stop with the fear...it doesn't help and actually hurts you...You need a good doctor, sounds like you have the supporting fam, hitch up with an MS Society and armed with your sense of humor and some faith, you will be more than fine...its just MS..Don't freak out.
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hi

Postby 71jules » Wed Mar 18, 2009 8:00 pm

Hi there, it's hard not to.

If I had an off switch I would press it.

I thought I would have to be diagnosed with MS before approaching the MS Society for help or councelling.
If it turned out it wasn't I would feel like I have wasted their time and taken the time away from someone with 100% diagnosis.

Jules
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Postby catfreak » Thu Mar 19, 2009 4:39 am

Nene,

No doubt Jules will be fine. MS or not, she will be fine. But like she said she does not have the off button. None of us do. That's why we have TIMS - to support each other through our difficult times. It's easier to share your fears here first - than with your family. Here people don't flip out cause they understand. We can come here and gather some sense of the disease and understanding of the treatments and how others deal with them. That make us better equipped to then talk with our families and friends and even our Neuro. I have never contacted the MS Society since I live in a small town and there is not one nearby. I think that's fine for me, others may need that more. It's a choice.

We all deal with the Probable MS, RRMS, PPMS or SPMS in our own way.

CF
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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hi agin

Postby 71jules » Thu Mar 19, 2009 5:15 am

:( :? 8O :x :cry: Just some of the feelings I am going through with the waiting of the possible diagnosis.

As Catfreak said, we all deal with this our own way.

This site is a blessing in disguise, the way I accidently came across it after a search on the symptoms after the gp suspected it.

The support network is amazing and the way I can speak about my fears and concerns but also have a few positive laughs at times is great.
It helps me be at ease and know I am only going through a very normal time with this uncertainty.
Jimmylegs and Catfreak and Needled in particular you have and are amazing, the help you have given me.

I will continue to come here and if I am not diagnosed with MS I will go away having met over the net some very very nice people and never forget what you all did for me.

Until next comment.

Take care.

Jules :)
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new to this

Postby scotty » Sun Mar 22, 2009 4:20 am

Hi,
In responce to Jules, I have read a lot of your history and it sounds very much like what i am going through. Firstly let me tell you a bit about my history. In Nov 2004 i had a 1 off session where i felt a really strange sensation in my head and then had like a seizure and a stroke all in 1 (that is the best way i can discribe it) When i came half out of it i could not lift my legs and was paralised down the left side of my face and so basically i couldn't talk properly. I was sent home from hospital unable to walk about 10 hrs later and included a shrink visit as none of the medical tests done could explain the episode. Anwyay almost 2 years to the day i had the same thing happen. This time i saw a physcian, after being proded and poked the responce was there was nothing medically wrong with me and to take a glass of water if i feel an episode coming on. Then another 2 years later i had another 1 off episode followed by what i thought was a heart attack 2 weeks later. I have since done some research into MS an found what is called the MS Hug. This to me described the heart attack as for me it felt like my chest was just getting squashed and at time i was unable to breathe. After each of these episodes i presented to the emergency department only to be told there was nothing medically wrong, after dozens of blood tests, chest Xrays, ct scans, lumbur puncture and an MRI without contrast medium as they seemed to think i may have had epilepsy. Anyhow to cut a long story short i had 2 and a half months of hell where i had extreme fatigue, at times i was unable to walk and talk, my wife had to bathe me on several occasions i had tremmors mainly in my left hand pretty much on and off every day and at times i had a full blown seisure although i was semi concious the whole time. I had made an appointment with a Nuro and at that time was ok and thought you bueaty this has gone away. Now for the good part ... it came back with avengence on 14 Feb 2009 and have had pain in legs and arms pins and needles in feet and hands, drunken states, fatigue etc. every day since. I have had several more episodes of what i believe is the MS hug to the point of being hospitalised (at last). More tests proding and poking and again even after i told them i thought i could have MS they still didn't believe me and even told me i didn't have any symptoms. I finally managed to convince the Director of Emergency that i need a full head neck and spine MRI to check for MS. Unfortunately for me this has all taken 6 months and is begining to take a huge toll on our family. My advice to you is to insist on the MRI asap and take whatever other tests may be appropriate. I would even go as far as to book at least 2 Nuros as the good ones seem to be extremely difficult to get into. I was not teribly impressed by the first one that i saw as all she basically did was read a report from the hospital that inferred it was psyhcological and has also booked me in for a telemetry test at the end of next month. Hope you get a diagnosis soon as this seems to bea terribly long and drawn out process. Thanks for listening i know it helps to have someone to talk too.
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Postby 71jules » Sun Mar 22, 2009 4:09 pm

8O Hi and I am so so sorry for all the things you went through, do you have a defininate diagnosis now?
I feel for you and your family and I know how you must have been feeling.
It is tough, very tough not knowing and having tests and more tests and different specialists etc.

As you would have read, I have been having symptoms for quite some time and have been through test that didn't have anything to do with MS, been sent to different doctors, had surgery looking for something to explain pain, possibly heart attack symptoms, er visits you name it.

Thank yor for taking the time to send that post, I am touched by your kindness.

You take care and I will keep you posted as to how the MRI goes on 21st April.

Hugs

Jules
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new posting

Postby scotty » Sun Mar 22, 2009 5:27 pm

Hi jules,
I also live in QLD, Rockhampton in fact i summise that you must live somewhere around Brissy. The services here for hospital are atrocious. I have just put a new posting up somewhere on this site that will tell my story in a little more detail. But to answer your question, for me it has been pretty much full on unable to work for 6 months and still no diagnosis. Just last Monday i managed to convince the Director of emergency for the full MRI so am waiting anxiously for that to come through. Also last Monday night i ended up in Emergency and ended staing until Friday. Being told there wasnothing that could be done here and that i have to go to Brissy. As i think i mentioned earlier i have a Telemetry on next Tuesday for 3 days in Brissy so will play the wait and see game.
Thanks for your thoughts.
Scotty
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Postby 71jules » Sun Mar 22, 2009 8:17 pm

Hi again, yes Brisbane and I am under the care of a Neuro with no good bed side manner at Royal Brissie Hosp. I have asked for a change of Dr.
What is a Telemetry?
I have been frustrated with all my symptoms and every day I get electric shock pain anywhere in my body mainly my right arm. It is worse when it happens in my abdomen area.
My hands don't feel 100% sensitive to touch but the dr after pricking my fingers and saying feel any diference and me saying not really tells me test performed were normal. OMG!, not if he had have bothered listening to me and really undertanding what I said GGGRRRR :x .
I sympathise with you and look forward to hearing a positive outcome for both of us, some answers would be nice.
Did you read all my symptoms from the start of my post?
Dreadful :? :(

Stay strong and focused and I will try the same.

Hugs
Jules
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