PLEASE HELP I IAM SO SCARED

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Postby jimmylegs » Mon Jan 26, 2009 7:05 am

heya jules, is it this friday coming up that you get your bloodwork done? have you checked to make sure that b12 is on the requisition? do you know if he is going to test for parietal cell antibodies? can you think of any reason (other than the nitrous exposure) why you could potentially be at risk for cobalamin (b12) deficiency? if you haven't already, please tell your doc about the way your symptoms worsened after nitrous oxide, and ask him about how it affects a person's cobalamin status.
your lip/tongue numbness could be peripheral or spinal. spinal cord damage affecting your mouth would likely be around the C4/C5 cervical vertebrae. do you ever get a weird kind of jolting buzzing sensation in your body if you move your head and neck a certain way? sometimes this effect, called lhermitte's sign, can indicate a lesion in the cervical part of your spinal cord. i have had lhermitte's pretty bad in the past, and i can assure you that it's 99.9999% gone and most of my sensory impairment is better - i just have some pain in the c6 neck of the woods, as it were, and numbness left in my hands. even that is nowhere near as bad as it used to be. i'd say, do all you can to relax, let us know what's being tested on friday all in all, and once you've given them some baseline blood, you can get busy on a few options safely, without waiting for the results. once the results are in, then you'll have even more info to go on with. in the meantime, be careful with yourself!
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Hi again

Postby 71jules » Mon Jan 26, 2009 2:31 pm

I don't know what to expect from my appointment this Friday but the numb lips and tonge I have had before the oxide treatment at the doctor.
No probs with neck or back.

I am trying to prepare that a blood test will be ordered as well as a an MRI which means, yep cannula where I severely hyperventilate and cry. They have sedated me previously for this test due to another health issue years ago and the sedation didn't kick in properly, I was unable to speak or move my arms to press the panic button but inside I was so so frightened with closterphobia, lol however the spelling goes.

I can't express how this support site is giving me an outlet and helping hand in handling all this.

Hugs

Jules
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Postby jimmylegs » Mon Jan 26, 2009 2:42 pm

yep i don't imagine that the nitrous oxide started everything, just that it made it worse was a kind of alarm bell about cobalamin.
if you don't have any symptoms of jolting associated with your neck, then your spinal cord is probably in relatively good shape, and if there is a lesion there causing your lip and tongue numbness, then it's probably pretty small. i am pretty sure b vitamin deficiencies cause peripheral neuropathy for quite some time before they go for the spine!
know how you feel about those tests and mri tunnels... i really, really, know. you'll make it through all right. do they have a little mirror on the mri headpiece for you? so that you can see out of it by the reflection? that really helped me, i could see right into the room on the other side of the glass, where the technicians were working. do they play music for you while you're in there?
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that was quick

Postby 71jules » Mon Jan 26, 2009 2:46 pm

No there wasn't a memory of a memory being there nor music, they thought they had hit me hard with the sedation but I then had to have a CT straight after it. When they came at me anytime with a needle to put fluid in the cannula I got extremely upset and hyperventilated till I nearly passed out. When it was all over they couldn't wake me up for ages they nicknamed me sleeping beautiy, lol.

In my life I have had to get over a lot of things which some I have called hurdles, two high jumps and here is another high jump. I was never an athletic person so I don't do well at this things, lol.

Will keep you posted.

Jules
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LOL

Postby 71jules » Mon Jan 26, 2009 2:50 pm

[bMEMORY OF A MIRROR...................... NO!

Yep not a good start to the day, we had Australia Day celebrations today and our rude neighbours decided to party until all hours of the morning.We even had to go outside and have a go at one for peeing eeeewww on our lawn. We copped a mouth full of crude offensive language. They are moving soon so good they don't belong in our beautiful street and suburb, they can go to woop woop.

LOL, that felt good, thanks for listening.

jules[/b]
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Postby patientx » Mon Jan 26, 2009 3:14 pm

Drunk people do that in Australia, too? I thought it was just an American thing.

I've never had the numb lips or tongue (yet), so I can't help you there.

What is the cannula? I know a lot of people have trouble with the closed MRIs, but the open ones aren't nearly as good from what I hear. Honestly, I find the experience pretty relaxing. The techs usually tell me how good the images came out. I think to myself, they should, I've been asleep for the past 20 minutes.

I know I keep repeating this, but I think you need something to help take your mind off of things. It's probably going to be a little time before all the test results (blood test, MRI's, etc) are in. No sense in eating yourself up with worry.
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Postby jimmylegs » Mon Jan 26, 2009 3:20 pm

arg you poor thing. well, if you get the same workup as i did, it's a pretty short list of four things to mentally prepare for:

-spine/brain mri
-evoked potential tests [not a big deal, first you stare at a flickering screen with some stick-on wires measuring how fast your brain deals with visual info; they use an instrument to poke at a nerve in your knee (from the outside) for the sensory part of the test]
-bloodwork (one pinprick gets them a LOT of information - they take some vials and look at chemistry - that's where the b12 test fits in - haematology, and coagulation)
-lumbar puncture (they test the fluid for the presence of certain elevated proteins and also for 'oligoclonal bands' which are indicative of chronic inflammation)

if you think the spinal tap will really freak you out, at least you know that you can't see the needle what with them being behind you and all. if you tell them to make sure to freeze it enough that you don't feel it either, it's easier to stay calm. i made my neuro freeze me twice because i was freaking out at even the slightest dulled sensation of the tap being done. once i had the extra numbing it was waaaaay easier to stay calm.

you can do it jules! knowing is half the battle, as they say ;)
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Postby jimmylegs » Mon Jan 26, 2009 3:26 pm

aww jules i knew what you meant hehe!
sorry you had a rough time last night
px you are right - one thing at a time. some people have to wait for years to get answers to their questions and at least jules you have the comfort of knowing they are taking your issues seriously and that your tests will be behind you this saturday :)
i hope you can plan a nice relaxing weekend of being thoroughly looked after and spoilt by your family, with lots of hugs and kisses :D
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thank you

Postby 71jules » Mon Jan 26, 2009 3:37 pm

:D

OMG!!!! If I have to have a spinal tap they will me paraplegic... I had a bone marrow biopsy done two years ago and it went dreadfully, three people holding me, heavy sedation but still I screamed and screamed and did everything thrashing my head against the bed and trying to move away from that screwdriver in my back. I could not ever go through anything again like that, I can't just can't. The MRI with cannula tube that goes in for the needle to through and stay is hard enough, I nearly break my teeth due to the convulsing of my body. Terrified to say the least.

For my sake let hope it doesn't go as far as a spinal tap or I will have to say sorry I can't just can't do it.

Hugs, hugs and more hugs to you all.

Jules
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Postby CureOrBust » Mon Jan 26, 2009 3:56 pm

I have never been asked to have a spinal tap, and would refuse if asked. I satisfy other McDonald criteria very satisfactorily. I also refuse to get enhancement when I go for MRI.
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Postby patientx » Mon Jan 26, 2009 4:11 pm

I'm still wondering what a cannula tube is.

I didn't do a spinal tap either. None of the neuros thought it was needed to diagnose me with MS. Guess my MRIs were bad enough. Plus, I was told, it was really only useful for confirming the diagnosis; if it came back negative, that didn't mean I didn't have MS.
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Postby Lyon » Mon Jan 26, 2009 4:12 pm

.
Last edited by Lyon on Sat Nov 26, 2011 9:10 pm, edited 1 time in total.
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Hi again re: cannula

Postby 71jules » Mon Jan 26, 2009 4:53 pm

I have never looked when they put a cannula in but it is needle that puts a small plastic tube in your vein which stays there, can be hooked up to a drip or they can put medication through the cannula straight into the vein.
It freaks me out, they have to cover the cannula stuck in arm straight away it makes me so scared and sick.
I was at the ER in Jan with a suspected heart attack at age 37 non smoking, non drinking female, they did every test they could and had a heart monitor on me well listen to this, when putting the cannula in I had my husband holding my hand and cuddling me, I cried, hyperventilated so badly it triggered the alarm around the hospital because my heart rate had increased to a dangerous level. You can laugh a bit here because if I had have been having a heart attack what would have happened?
I need a bottle smashed over my head, lol, heee heee to get any needle in me. I have tried valium but ended up legless and throwing up when I got to a hospital not good hey?

These things are meant to try us and I want whoever is sending these things to stop, I have had enough it's not funny...................

:D :? :) :arrow: :!:
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Postby dignan » Mon Jan 26, 2009 5:35 pm

Count me as another person who has never had a spinal tap, or even had a doctor mention the possibility. I had plenty of lesions, so they didn't need it I guess.

On the MRI freak-out, I'm a bit claustrophobic too and I took some ativan (lorazepam) and it did the trick. It isn't a sedative it's an anti-anxiety med. You don't fall asleep or feel out of it, you just suddenly don't give a rats ass about whatever was worrying you before, and it's taken in pill form, so no needles!
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No spinal tap either

Postby lyndacarol » Mon Jan 26, 2009 6:27 pm

Dignan spoke for me as well when he wrote:
Count me as another person who has never had a spinal tap, or even had a doctor mention the possibility. I had plenty of lesions, so they didn't need it I guess.


As for the MRI, we each find our own way to deal with it. I do not know if I am claustrophic, but do not take the risk--I close my eyes when lying outside the tunnel and tell the technician that I will not open them again until he rolls me out.

Another friend asks for a cloth to cover her eyes for the duration of the test.

Ask the tech for suggestions. I am sure they have seen it all.
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