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.

Postby patientx » Mon Jan 26, 2009 6:44 pm

OK, sorry to keep harping on this, but I gotta know...

So, the cannula sounds like the thing they hook an IV up to - sorta like a catheter. So why do you need one for the MRI? Even with the contrast, they just inject it with a needle, and you're done.

By the way Jules, a few years ago, at age 35, I was sent to the ER because they thought I was having heart problems. While no Lance Armstrong; I was pretty darn healthy. I had gone to the GP complaining of nausea, she did an EKG and said I might be having a heart attack. They did another EKG, hooked me up to tubes - and then the doctor came in and said I don't know why she sent you here. Turns out my EKG wasn't too abnormal - the GP just didn't know how to read it.
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Postby jimmylegs » Tue Jan 27, 2009 4:41 am

well now i'm sorta cheesed they made me go through that tap because they counted 10 brain lesions and 2 spine lesions. and i was told to lie down for 30 minutes after but ended up with the nasty post-spinal headache grrr
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mixed emotions

Postby 71jules » Tue Jan 27, 2009 10:15 pm

Firstly jimmylegs you poor thing for being put through that if you didn't really need it done.

The cannula gets put in so they can put the sedative solution in it to knock me into twilight ha could be heavier please? They then put the fluid in via that same cannula. The scan I had was ruling out bone cancer two years ago but I have had so many cannulas and needles for ongoing health probs and it doesn't get easier.

I am finding myself now two days to go to the appointment feeling like I have done a back flip and am in denial this could be me that might have MS. I know I am not invincable and am wondering did anyone else go through the ups and down of emotions? I was trying so hard to prepare for the possiblility and now I feel like I am going crazy with worry then the no this isn't possible. :roll: :? :(

I understand you might be a little upset trust me the fact the people replying have it and I'm carrying on and don't know if I have it. Arrghh

Hugs hugs and more hugs and thanking you for the opportunity to have your support as well as my loving family.

jules
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Postby MrsGeorge » Wed Jan 28, 2009 3:27 am

Hi

I just saw your post. Sounds like a pretty tough time and emotional rollercoasters are completely normal. I went through all the emotions from denial, and grief to being relieved when I finally received my diagnosis. A dx of MS is not a death sentence. MS does change my life but it hasn't stopped me from pursuing my dreams, doing the things I love (although my dancing isn't quite as sharp ;) ) and enjoying life.

I hope all goes well with the dr on friday. My top tip (just in case someone hasn't already said it) is to write down all of your questions so that you can make sure the dr answers them and also to write down a list of symptoms with timeframes if possible because it can be pretty easy to forget when sat with a dr.

I guess the other thing is not to shut out your family - it sounsd ilke they are great. I shut my husband out for a while, didn't talk to him much and then blamed him when he didn't understand what I was going through and sadly gave him a bit of a bashing on here. You are still the person your husband married.

take care x
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THANK YOU

Postby 71jules » Wed Jan 28, 2009 4:11 am

Thank you for that mrsgeorge I know my husband is doing his best to understand and he knows when to say something and when to just hold me close. This is a rollercoaster for the whole family, my husband, my 15 yr old son and 12 yr old very very clingy daughter.

I have written the symptoms down and have written another couple since my original post which is bladder problems.
Maybe the symptoms and specialist trips are going to add up to something, maybe not.

I have had many health problems and no answers. The MS society offers counciling in AUS, for sufferers and their families.

I am going coffee hopping tomorrow night to escape the anxiety a bit the night before the appointment, this is a tradition of mine before surgeries and big scarey tests and pokes and prods. I will come home have a mild sedative and then go to sleep and wake to be at the hospital to see the Neuro at 8am AEST, Australian eastern standard time.

Two sleeps to go and oh, oh gosh I am so so scared.

Hugs
Jules
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Postby catfreak » Wed Jan 28, 2009 8:47 am

Jules,

Mrs. George is so right about writing down your questions. If you don't write them down you will never remember what to ask. I know, it took me a couple of appointments to figure that one out.

The roller coaster of emotion is also typical. I was on it for 5 years before I received my official DX. Then no tears at all - just relief the DX was in and I could move on to treatment. I cried a lot more tears waiting on the DX.

Also, what is Coffee Hopping? Sounds like something I would love.

CF
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Postby Wonderfulworld » Wed Jan 28, 2009 1:23 pm

Hi Jules
hope you get the answers you're looking for.

I am truly phobic about dentists so I know what you mean about the needle/lumbar puncture thing. I've had 2 lumbar puntures (but reading the previous posts I wonder why, because my brain was plastered with lesion at time of diagnosis), one without any anaesthetic. The way I got through them was to hold absolutely still and focus my mind on swimming through a milky ocean. Don't know why but it helped. :lol:

I found my extreme fears of a lot of things diminshed on amitriptyline, which I take for nerve pain - but it is also prescribed for anxiety and depression and it did take the edge of a lot of other fears. Sadly though, didn't work for the dentist phobia.
~~~~~~~~~~~~~~~
Concussus Resurgo
~~~~~~~~~~~~~~~
RR-MS dx 1998 and Coeliac dx 2003
~~~~~~~~~~~~~~~
Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.
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Postby jimmylegs » Wed Jan 28, 2009 1:49 pm

hope those coffees are all decaf jules!!
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hi again

Postby 71jules » Wed Jan 28, 2009 6:18 pm

:oops: I had gone and put a message together and yep good old brain funtion failed I didn't press submit and lost the whole thing.

Trying again.

Complete list now of symptoms:

trouble walking, swaying, losing balnce approx 1 1/2yrs.

trouble talking, finding right words, trouble starting sentence mixing words up , trouble understanding conversation properly approx 1 1/2 yrs.

short term memory loss approx 1 1/2 yrs.

numbness/pins and needles hands, feet, leg approx 3 1/2 mths.

numbness in lips, tongue approx 2 week.s

electrical shock sensation down arm approx 3 1/2 mths.

loss sensation in hands slight weakness in arms approx 3 1/2 mths.

unexplained stabbing/tearing shock sensation in lower right and left pelvis which is also unexplained by laparoscopy November 6th approx 2 yrs.

throat tightening, swallowing difficulty undiagnosed by barium swallow and CT approx 9/11/07 but had been going on since rougly September 12th 07.

bladder problems undiagnosed by urodinamics approx 5 yrs ago.

room spinning head not feeling right off balance sitting and standing and feeling unwell including nausea occasionally approx 3 1/2 mths.

severe fatigue approx 2 yrs.


Heat exaserbates symptoms particularly walking problems and talking and thinking.
Nitrous oxide at dentist made walking and thinking and talking more difficult particulary the walking. Had memory loss too apparently.

Hope this is what they will be looking for I have done my best to remember and give approximate time frames.

Hugs
Jules
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Believe me I can spell

Postby 71jules » Wed Jan 28, 2009 6:39 pm

:oops: I can spell but every time I read back a post to myself there it is a spelling slip or mistake.
Frustrating me, I am a touch typist and am having trouble doing that, even putting my fingers on the right keys.
:D I will leave you with a fav saying of mine:

CATS ARE LIKE POTATO CHIPS, YOU JUST CAN'T STOP AT ONE.

Yes I am a cat lover..................................
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Postby jimmylegs » Wed Jan 28, 2009 6:52 pm

hey jules i'm just honing in on those shock symptoms you describe. in the pelvis in particular. tell me exactly about a time that you got the pelvis shock. what were you doing? how was your body positioned? can you *make* the shock happen if you want to? if so how would you do it?
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Postby Needled » Wed Jan 28, 2009 7:03 pm

Jules, Your list should help the doctor. It’s so natural to get sidetracked and lose your train of thought during a visit. I bring a copy for my doctor, too. I also date and save my notes. They've come in handy a few times.
By the way, like a lot of folks here, I’ve never had a spinal tap. Just lucky, I guess. :D So in addition to hating needles, we both love cats (I have 2, Chip and Putt). I’ll be thinking of you Friday. I hope you get some answers.
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hi again

Postby 71jules » Wed Jan 28, 2009 7:26 pm

Firstly my pelvic pain came on from nowhere it is severe has me double over I don't have to be standing, sitting or walking but if I get it the colour comes from my face and I feel faint. The CT, surgery etc have showed no cause but this is not normal.

I don't know if it has anything to do with the other symptoms but hey I may as well mention it, you never know.

I have three cats, one ragdoll called Hamish, one persian called Tassy and another persian called Halo. I am very spiritual and love cherubs and angels so Halo was the purrrfect name for a white persian don't you think?

Hugs
Jules

I will carry your thoughts with me tomorrow.
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Postby chrishasms » Wed Jan 28, 2009 7:33 pm

I hate to say it, but, those symptoms seem awfully MS like to me.

The best thing that happened to me was finding out I had MS. I was so happy to have a face to fight rather than something scary. It also forced me to take better care of myself.

MS is not I repeat IS NOT a death sentence and I am a firm believer with all the MS drugs new and old (and getting ready to be approved), and the new President pushing stem cells, it will never be more than a pain in the butt once in a while. In 20 years if MS is not something that can be treated as a run of the mill sickness I will be shocked.

Hang in there and remember, you are right where God wants you to be!
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Hi again

Postby 71jules » Wed Jan 28, 2009 7:41 pm

Hi and thanks for that, do you mean all the symptoms I gave or specifically the pelvic pain coming on suddenly with no due cause?

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