PLEASE HELP I IAM SO SCARED

[71jules]

Hi guys thank you and petakitty thanks for the laugh and also hugs back to you catfreak.

Jules

[71jules]

Hi again, just letting you all know I went to see my vascular surgeon today to discuss my possible vasculitis.
After her getting an update on me and being shocked by the symptoms I had to tell her about and the increase in severe headaches she said if I do have a type of vasculitis there is a chance it may be a clot/anurism on the brain. She seemed to lean to thinking definitely MS but still wouldn't rule out the clot or anurism and has requested the MRI results.
We are making sure there is nothing to trip on in our home in case I do have a clot as this could be life threatening.



Hugs

Jules

[catfreak]

Wow Jules,

My heart go out to you with hugs...

My Doc also considered vasculitis as part of my dx - but ruled it out. I was put on Plavix to keep the blood flowing and of course keep plaque from sticking to my arteries causing a blood clot. Since I had MRI's we know there was no clot yet so that was preventative. I don't take it anymore.

I am thinking of you daily!

Let's go over our emotions one more time.........



CF

[71jules]

Thanks so much catfreak, those emotions are spot on and thank you so much for your thoughts and hugs.
I have my hospital pre visit next Thursday and they are doing an ECG and making sure I am healthy enough for the General Anaesthetic.
I will find out whether they want to have another blood test even though they did a huge amount about 6 weeks ago. I hope they don't, really!
The MRI date is still set for April 21st which is a Tuesday and I suppose maybe it won't be long until we find out something one way or another.
I do know if it is MS, it may not show on the MRI and thats when they will look at a spinal tap. Is it possible to have MS but it not show up originally on an MRI do you know?
Does anyone know why it can take years to diangose, I feel confused that they say an MRI of the brain or and spine will show lesions and also the spinal tap, OMG just the word makes me shudder, can also give them a diagnosis. Why then would it be so hard to work out?
My symptoms have not weakened but worsened and increased over 3 years from the start of symptoms which at the time I didn't think and either did the doctors of MS.



Hugs right back to you.

Jules

[71jules]

I have been having trouble when I have to walk on an incline the strength in my legs not there I walk like an elderly person.
Anyone else have this problem, I have it any day I have to do that on top of my other symptoms. Pain in eyes too sharp very sharp.

[catfreak]

Hi Jules,

Sending you my prayers and hugs everyday! Hang in there until you can get that MRI and maybe get some answers to all these questions.

If you get to scared PM me we will talk though it.



CF

[71jules]

I am curious to know whether anyone feels the same as me.
I have had it said three times already that if I am diagnosed with MS, then at least I will know whats wrong with me.

Hellloooo, people who say that put yourself in my shoes for just a moment, oh yeh you can't so maybe they should think before they speak then.
Sometimes actions are louder and better than words.

We are all different I know but I really hurt hearing that.

Hugs to you all.

Jules

[LR1234]

I.......

[chrishasms]

I had my MRI on my birthday, saw the white spots when I left the tube and knew I had MS so that was my Birthday present in 2004. At that point I was ecstatic to finally have a face on the bugger so I could at least fight it.

[lesley823]

Hi i am in the sam boat as you, I was recent dx Feburary 3rd of this year. I had some weird numbness on the right side of my body...headaches...and so my doctor sent me for MRI which showed some lesions, so moving forward I went to a neurologist and he sent me for a spinal tap. Well with two positive test they were able to atleat tell me what it was. Well at the time it was right before my 30th d-day. Which to me alone that was the worst thing that could happen was for me to turn 30...Well no the worst was coming home from being out on my birthday to find my shots and autoinjector on my door step. This was the one thing that made it all seem to real for me. So at this point in my life I can either accept it and do everything I can do postpone it, so that is what I am doing. I have a little girl who needs me, and an awsome fiance as of March 8th. SO I am living my life and doing the best you can because that is all that you can...Best wishes to you!

[jlbb]

My official diagnosis was within days of my 33rd birthday - just over a month before my wedding. When I was at the hospital weeks before, getting the CaT Scan to determine why I couldn't write anymore my mom said "I hope it's a stroke". I now know why she said that. Her father had recovered from his stroke - I won't "recover" from my MS.

[71jules]

Hi guys and thanks for all your replies.

I am sorry to hear all of your stories and about your diagnosis being so close or on your birthdays.
My MRI is April 21st but my 38th birthday is June 21st so who knows, am I maybe going to get the diagnosis close to or on my birthday? Hope not, this won't be something I want to hear as you all understand loud and clear no doubt but to get it near or on your birthday would suck big time.

I will let you all know as soon as I am up to posting if I find out whether it has come up that yes Jules you do have MS.
Time, time and more time and tears I can imagine to comprehend those words.

Hugs again and thank you so much to everybody for this ongoing support.

Jules

[catfreak]

Why does it seem harder to find this out close to a special event such as birthday's for Chris, Leslie and Jlbb. Maybe not for Jules this time, but if so - it will be a crappy birthday present.

I know my ENT told me right before christmas that I all my symptoms mirrored MS. forward the calander 5 years and I get the Official DX right before my 24th wedding anniversary. So that time was spent worrying about rebif shots.

But then is it ever a good time to be diagnosed.

CF

[71jules]

Hi guys, soz but I have to post this.
I went to the hospital this morning stressed just being in a hospital, had an ecg and then went and met with the Aneasthetist.
He checked heart and that I could open my mouth extend my neck etc.
Very nice indeed and fully understand my phobia and how hard it will be do get me under anaeasthetic.
Ok I was very happy to hear him say I didn't need to have yet another blood test.
It wasn't until this afternoon I broke down into a heap and cryed due to the hospital not being clear on how or when I will get my results.
Basically roughly 6 weeks after the MRI an appointment will be made so I wait and wait and stress and stress but then get told if they find something I will get a call to come in earlier.
Great, NOT!, if I get a phone call telling me that I need to come in I would rather they not get me in to tell me that. How the ? do I collect myself and walk out to the desk and face the people in and around the hospital as I walk with my husband back to the car?
Every time the phone rings I am going to petrafied it will be the hospital ringing to say come in early and knowing they found something.
I will need my husband here if I am going to get that call.
Guys I am sorry but you can tell it has been a bad day and I am at my wits end playing this game, I want to stop and end it now!
No, not suicidal thoughts it is a way of speach I am using to try and describe my thoughts.
Interested to know how they tell you in America in particular due to the majority of you lovely people living there.
So sorry if I have upset or angered anyone for my post, really I am hoping you understand where I am coming from.
Desperately needing answers sooner than later so we can deal with it as I cannot escape the truth if it's there in front of their faces.
Thanks for reading.
Hugs
Jules

[chrishasms]

This is the only advice I can give.

Go in there already knowing you have MS. Accept you have it right now. Then, it's easy to get the news. Plus if they say it looks good you can be so much more happier!!