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 chrishasms » Wed Jan 28, 2009 8:17 pm

Well I always had something or another hurting it seems like. Then my wife who is going to start studying to be a nutritionist and may go into functional medicine, was researching Fibromyalgia and a chunk of MS'ers have it too, but really have no idea.

The best advice I can give you is to start working out whatever is hard now. If your arms bug you start to work them out. All MS is, is a tiny stroke (so to speak) in your brain. Now if people can rehab from a stroke, it can be as so with MS.

The best thing is to stay head of it if you can. Take your meds and be diligent in working out because repetition rebuilds those connections and reinforces them.

But, alas, let's wait until the doc tells you for sure.
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went to Neuro and not happy.

Postby 71jules » Sat Jan 31, 2009 12:53 am

:( :? :D Hi again, ok I will try and make this short but will struggle.
I went to see the Neuro on Friday, I was told I was seeing a female but turned out to be a male. The hospital is a public hospital in Australia, the appoinment free and it is a training hospital. The dr I saw was under the watchful eye of a fully trained Neuro but she was only in the room about 5 minutes and didn't listen and tried to put words in my mouth.
The Neuro, (male) did certain tests and after reading through my symptoms which are many said, "could this be MS"? "very possible".
The female fully trained comes in and the male didn't even tell more than 2 of the symptoms which there are about 10. She asked me do you get headaches, which I replied yes. I told her I get no more than what I have done since I was a teenager. She then starts going on about diet and exercise but says we will do an MRI to rule out an autoimmune disease.
I am getting it done at the hospital and the next bit will probably shock you guys living in America due to what we hear about your medical system over there. I am getting the MRI done using a general anaesthetic and will be kept in hospital for at least one night for observation. Yes all this is free in Australia. I had a very bad experience with a previous MRI a couple of years ago where they used a twilight sedation but it put in a comatose type state where I was going hysterical inside but couldn't speak or move my body. I was so scared and it freaked me out.
I don't know yet the day but will keep you posted. If the female Neuro had of bothered reading the symptoms and dates etc I had, she may have had a little more to say. The male Neuro is an intern at the hospital so he has a little to learn about relaying all the symptoms.
The bottom line is though an MRI is getting done and hopefully it turns out negative findings. It was mentioned the possibility of a spinal tap if the symptoms continue, hello! they have been around for a very long time and getting worse. Anyway don't want to go there with the thought of that happening OMG! that is oh, my gosh.......

Keep smiling and thanks again for this site with these amazing people on it helping me out while going through this.

Jules
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time difference in America?

Postby 71jules » Sat Jan 31, 2009 5:43 am

Hi, just wondering what the time difference is in America please?

Would you believe in Australia the states have different times, currently Brisbane is behind Melbourne by one hour and I think one hour behind Sydney too. WA about 2 but sometimes 4 and Adelaide about 1.

:D

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Postby harveythewonderhorse » Sat Jan 31, 2009 12:55 pm

re claustrophobia and MRI, as someone has already said, close your eyes before you go in and keep them closed is def the way to go, I get my steroids/tysabri through canulas, not half as sqeamish when they are in my upper arm, back of hand ..ewwww.. would both be really upsetting for you?
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Cannulas and needles and claustraphobia

Postby 71jules » Sat Jan 31, 2009 4:46 pm

Hi there, yes whether it's a cannula in my arm or hand it is distressing very distressing but the back of the hand is the ultimate thing when it comes to needles etc. I can't win with this MRI being done I can't have it without sedation and the sedation, heavy they used didn't work and caused me to be terrified due to it only half working. Going in for a general which is the thing they are offering me I will have to have a cannula in the back of the hand and the hospital keeps a drip in you the whole night until you go get ready to go home in the morning. I need to get my head around a blood test with two pages of requests which I will be having either tomorrow or Tuesday.
Wish I was phobic to something else other than things you have to have done to keep yourself healthy and alive and precautionry reasons.

:D Keep smiling.

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Postby jimmylegs » Sat Jan 31, 2009 5:29 pm

lol jules i was in WA when the daylight savings time came in, big uproar about it haha!

anyway check out this site http://www.timeanddate.com/ you can figure out the diff to anywhere in the world. where i am it is 7:15 saturday night. in brisbane it is 10:15 sunday morning.

hey jules i hope you can find a place to help you work through some of those issues. general anaesthesia isn't so much fun. did you get a chance to tell them you reacted badly to nitrous??? if it's a general that you inhale, they'll probably be hitting you with even more nitrous.

if they've finished the b12 bloodwork my dear, it is past time to start addressing all this nitrous and associated impacts

here's something else although i know it's only n=2 and that cyclophosphamide is not in your picture right now:

Two patients with asymptomatic vitamin B12 deficiency developed a peripheral neuropathy 6–7 weeks after exposure to nitrous oxide during general anaesthesia, and 3 and 11 days after receiving cyclophosphamide. The serum B12 concentration was less than 20 pmol/l and the symptoms resolved after B12 replacement. We believe that the neurological symptoms were triggered by exposure to nitrous oxide. A possible novel feature in these patients was the close temporal relationship between the onset of the symptoms and cyclophosphamide treatment. It is possible that cyclophosphamide reduced the availability of remaining B12 stores.
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hi again

Postby 71jules » Sat Jan 31, 2009 6:32 pm

Hi, I did get the opportunity to say about the reaction but to no evail of comment.
They are checking everything on blood work leaving nothing unturned.
I am not going for it this week it can wait another week I think so I can breathe and have rest for my mind.

Thanking you for that info on time differences, it gets confusing.

Take care and I will be in contact regularly.

Oh, a couple of things has anyone had tightening of the throat almost like there is a tight chain around it? Difficulty swallowing as well, tablets getting stuck for hours in my throat. CT revealed nothing, barium swallow only revealed trouble swallowing the marshmellow, which took two goes.

Ta again.
Keep smiling. :D

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Postby jimmylegs » Sat Jan 31, 2009 8:52 pm

i had trouble with my throat and breathing too. i felt like i had a tennis ball lodged in my throat, but at the same time all my spit went down the wrong way. plus i couldn't get a proper deep breath. my barium test showed nothing, but that's crap it's not by any means a sensitive test as far as i'm concerned. the doc said it was a bad habit of mine to clear my throat, but the pharmacist that told me about magnesium really did help my throat. when i went for the barium test i had been skipping my mag supps for a couple weeks and my throat was really bad. leaving for the test i took some finally so that it would kick in after my test and i would have relief asap. well there was a big delay and it kicked in *during* my test, which might well be a good part of why they didn't see much, but i could still feel that it wasn't perfect yet even though i knew the mag was starting to work on it.
regardless, even though the specialisst listened to everything i said it was like talking to .. i don't know just something acting like a person but not really there.
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re: previous message

Postby 71jules » Sun Feb 01, 2009 1:08 am

Hi again.

Yes my throat has been acting like this for 16 months, tightening like it is closing up voice changing, lump like sensation and just like a chain or rope is tightened around it. Very distressing especially at night.
As I write this my throat is playing up my hands are numb and rubbery my foot is numb, my lips both numb.
I cannot believe the female nuero having a lack of bed side manner too and don't think she would be too compasionate if she does have to give me the news I have MS. 8O

Will keep posted.

Hugs
Jules
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Postby jimmylegs » Sun Feb 01, 2009 5:48 am

hmm not fun is it.
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Check for private message

Postby lyndacarol » Sun Feb 01, 2009 8:54 am

Jules--I sent you a PM.
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oh, I wish I had an instruction manual for this nonsense

Postby 71jules » Sun Feb 01, 2009 11:25 pm

Thank you jimmylegs for your comment, Not Fun. Very distressing.

Lyndacarrol, thank you so much for your kind words and support in your message. The hospital rang today and they will be doing it under a general anaesthetic. I can't win, this way is an extra toll on me but having it without sedation is a 100% no way I can do it. I have been told I would make a great cave women due to the adrenelin that rushes when I feel threatened by a needle. Cave women were ready with their clubs to beat any enemy and protect their children apparently back in the dark ages, lol.

I am really struggling with all this uncertainty and feel like I am going crazy and feel like curling up in a ball and going into hibernation till it passes over like the brown bears do in the winter.
I know though if that was possible it would still be there when I would wake up. :)

Honestly I cannot express my gratefullness enough to you guys for your ongoing support and I wish I could jump through your screens and give you all a big hug......... :D
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HUGS TO YOU ALL

Postby 71jules » Wed Feb 04, 2009 8:04 pm

:D Hi just throwing my arms out your way to everyone who has been showing support to me. You guys have no idea how you are helping me get through the uncertainty of whether this is MS or not.

I will keep you all posted and know there is not a day that goes by where I don't think of you all.

Hugs
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update

Postby 71jules » Tue Feb 10, 2009 10:17 pm

Hi there, just keeping you all posted.

I have not improved and if fact have got worse and more worried.

I have had my blood work but not heard so take it they found nothing.

My MRI, still waiting on the date for that which I will find out poss this week.

I thank you all again once more.

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Postby jimmylegs » Wed Feb 11, 2009 6:35 am

hi jules, please ask the docs specifically what the b12 result was, with units?

their idea of finding nothing, just means you're within the "normal range" - but the "normal range" is not about the range of levels in optimally healthy people. "normal range" includes a lot of sick people. this situation applies to ms patients with nutrients like b12, d3, and various others.

with b12, where they draw the line for deficiency is when the level gets down so far that there are observable physical changes - you get various symptoms, like numbness and cognitive problems, and blood vessels actually start to change shape and/or size. because they can SEE this, that means deficiency.

but problems can happen long before you get a visible or sensory issue. such as in the case of vitamin d3 where at less than optimal levels you get cancers and other inflammatory diseases, where you might not have more visible evidence such as rickets.

let us know if you're successful in getting in touch with them. hope you can feel better soon!

JL
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