On edge waiting for MRI results

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On edge waiting for MRI results

Postby CeliaV » Mon Sep 03, 2018 6:06 pm

Hi everyone. I'm in the process of ruling out stuff right now. It's possibly MS. My uncle, great uncle, and my father's cousin all had it. Unfortunately I live in a region where there is a high rate of it.

I've seen a neuro, and I just had a brain and spine MRI this past weekend. I was in the machine for 1.5 hours, but lying there flat on the table made my left arm hurt really bad from the neck down. It was starting to get unbearable toward the end, and I "called" the radiologist with my squeezer to ask if I could move my arm. I'm usually not brave enough to speak up for myself about minor stupid things like that, but it HURT :lol: it was only after I got to sit up again that all the arm pain went away. Like almost instantly. Wouldn't really be worried about it except my neuro seemed concerned about my left hand shaking. I always chalked it up to nerves and being shy because it's only pronounced in strangers' presence, but I never really noticed it was just the left hand. Idk, it might not be important.

Anyway my neuro mentioned possibly needing to do a spinal tap but said not to worry about that for now. But it still freaks me out! Lying still for the MRI was bad enough, but lying very still on my side for a needle to be pushed into my back??? I chose to be awake for my wisdom teeth being taken out, but this is a different story!! :cry: I did my MRI so now I wait. But nothing probably means a spinal tap and something might mean MS. Or they may want a spinal tap with if there is something on the results!!! It's really freaking me out.

Unfortunately I have a tremor in my leg when I do a sort of rockette pose as my neuro described it, lol. That's the main thing that worries me. I've had it for almost a year but I associated it with straining(?) my hip. Just noticed it one day. Occasionally since then my knee will also give a little while walking after I've been sitting (only happens like once a month or less). But a couple weeks ago it was happening a lot for 2-3 days. This symptom has since disappeared again. Not sure what's really going on there!

But the symptom that brought me to my primary doctor recently were these electrical/tingling sensations. I started getting brief zaps in my leg with the tremor. Didn't think much of it. But a couple weeks go by, and then I got tingling zaps under my collarbone and in my left arm. It was very constant for a few days. And annoying! My primary doctor ordered blood tests and referred me to a neurologist. My primary said my blood tests were normal, although my neurologist wants me a little higher on B12 so I've been on that for a full 3 weeks now. Still getting zaps but maybe it hasn't kicked in yet.

The only other thing worrying me is that my reflexes were weird in my leg with the tremor. When my neuro used the hammer, my leg kicked but then it kicked a second time for no reason!! He also said something about me kicking far. I feel like I was nervous and maybe jumpy, but I definitely didn't intend to kick twice. This ever happen to anyone else? Do you think you were just nervous?

I apologize that this is so long. All this stuff just keeps going through my mind and I want to get it out somewhere. I don't think I necessarily have MS, but I am worried I could have it. I mean, even if I did have it, I'm doing pretty well right now all things considered. Still a bit frightening though because I know it can progress and I've seen it progress, and I just graduated college and got a new job. I don't know. On the bright side, my neurologist was super friendly and funny! Definitely took his time with me and was thorough. I feel like I'm in good hands if something does show up.
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Re: On edge waiting for MRI results

Postby NHE » Mon Sep 03, 2018 9:58 pm

CeliaV wrote:Anyway my neuro mentioned possibly needing to do a spinal tap but said not to worry about that for now. But it still freaks me out! Lying still for the MRI was bad enough, but lying very still on my side for a needle to be pushed into my back??? I chose to be awake for my wisdom teeth being taken out, but this is a different story!! :cry: I did my MRI so now I wait. But nothing probably means a spinal tap and something might mean MS. Or they may want a spinal tap with if there is something on the results!!! It's really freaking me out.

Welcome to ThisIsMS. You may be interested in reading the following papers concerning spinal taps and the orientation of the needle bevel. Having the needle bevel oriented so that it's parallel with the long axis of the spinal cord will help to minimize cutting of the dura fibers and thus minimize post tap leakage of spinal fluid ultimately minimizing the risks of getting a post tap headache. These headaches are unlike anything most mortals have experienced. Mine lasted for a week. I can best describe it as feeling as though someone was trying to pull my brains out through the back of my skull. You don't want this. The best way to minimize the risks are to discuss needle bevel orientation with your doc PRIOR to your spinal tap AND also to stay laying down after the tap for however long your doc recommends even if it's 30 minutes or more. The time will be well spent and it's certainly better than a week of misery. It's also important to hydrate after the tap. Slowly sip a glass or two of water. Use a straw so you don't have to sit up and don't drink so much you have to run to the bathroom. You really want to stay horizontal as long as they'll let you. Oh, and I had all 4 wisdom teeth out on the same day. If it wasn't for the post tap headache, the wisdom teeth removal would have been worse.


Bevel direction and postdural puncture headache: a meta-analysis.
Neurologist. 2006 Jul;12(4):224-8.

Needle bevel direction and headache after inadvertent dural puncture.
Anesthesiology. 1989 May;70(5):729-31.
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Re: On edge waiting for MRI results

Postby Scott1 » Tue Sep 04, 2018 12:27 am

Hi,

1.5 hours in one go in an MRI is a very long time. I'm not surprised that you were uncomfortable.

If you have to have more, ask them to break up the time so scans are done so you can have a chance to refresh yourself. It's cruel to do you that way.

Regards,
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Re: On edge waiting for MRI results

Postby jimmylegs » Tue Sep 04, 2018 3:57 am

hi celia and welcome :)
Hi everyone. I'm in the process of ruling out stuff right now. It's possibly MS. My uncle, great uncle, and my father's cousin all had it. Unfortunately I live in a region where there is a high rate of it.
me too on the regional bit at least. even with family prevalence, there's a lot to consider in terms of what you can do to minimize your risk.
I've seen a neuro, and I just had a brain and spine MRI this past weekend.
not the most fun. glad you spoke up re the pain.
my neuro seemed concerned about my left hand shaking. I always chalked it up to nerves and being shy because it's only pronounced in strangers' presence, but I never really noticed it was just the left hand. Idk, it might not be important.
makes me think about things that can be affected by stress

Consequences of magnesium deficiency on the enhancement of stress reactions; preventive and therapeutic implications (a review).
https://www.ncbi.nlm.nih.gov/pubmed/7836621
"Thus, stress, whether physical (i.e. exertion, heat, cold, trauma--accidental or surgical, burns), or emotional (i.e. pain, anxiety, excitement or depression) and dyspnea as in asthma increases need for Mg. Genetic differences in Mg utilization may account for differences in vulnerability to Mg deficiency and differences in body responses to stress."
Anyway my neuro mentioned possibly needing to do a spinal tap but said not to worry about that for now.
deep breaths, no need to freak out. i will link back to older posts where i've described different LP strategies in detail. what NHE said re bevel orientation is worth following up on, but know that the post-LP headache is certainly not the norm. good to ask about the bevel orientation, resting horizontal for a long time after, both in the hospital and at home. *if* the headache happens (for many it doesn't) don't play through the pain. rest, horizontally.
in my case i think the slow heal of the puncture wound was related to underlying zinc deficiency that nobody had tested for. i had had a very restrictive diet leading up to my dx episode and when i asked for a zinc test later, i was deficient. so for me that put my LP issues in perspective.

Post spinal puncture headache, an old problem and new concepts: review of articles about predisposing factors
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3762227/

(does the article mention zinc status? no. as far as i can tell, nobody has investigated a research question about possible links between zinc with its known importance for wound healing - not to mention low status typical in ms patients - and post LP headache.)
Unfortunately I have a tremor in my leg when I do a sort of rockette pose as my neuro described it, lol. That's the main thing that worries me. I've had it for almost a year but I associated it with straining(?) my hip.
another suggestion of possible magnesium issues (also common for ms patients - low normal serum mag)
Occasionally since then my knee will also give a little while walking after I've been sitting (only happens like once a month or less). But a couple weeks ago it was happening a lot for 2-3 days. This symptom has since disappeared again. Not sure what's really going on there!
in my case i associated that one with low b12 and for ages i could reverse it with a b12 tablet. i didn't take it seriously enough, and did not pay attention to anything else - even though b12 doesn't work alone to maintain the nervous system
But the symptom that brought me to my primary doctor recently were these electrical/tingling sensations. I started getting brief zaps in my leg with the tremor. Didn't think much of it. But a couple weeks go by, and then I got tingling zaps under my collarbone and in my left arm. It was very constant for a few days. And annoying! My primary doctor ordered blood tests and referred me to a neurologist. My primary said my blood tests were normal, although my neurologist wants me a little higher on B12 so I've been on that for a full 3 weeks now. Still getting zaps but maybe it hasn't kicked in yet.
lhermitte's sign. without mri, this usually indicates an active spot of demyelination. a lesion. not surprised the doc wanted your b12 higher. i have lots of xp with b12 deficiency including all the fun electric shock nonsense. haven't had to deal with it for just ages now. used to have a lot of weird stuff going on. what was you specific b12 result if you don't mind sharing?
The only other thing worrying me is that my reflexes were weird in my leg with the tremor. When my neuro used the hammer, my leg kicked but then it kicked a second time for no reason!! He also said something about me kicking far. I feel like I was nervous and maybe jumpy, but I definitely didn't intend to kick twice. This ever happen to anyone else? Do you think you were just nervous?
sounds like 'brisk reflexes'. i had those when going thru the dx hoops. i used to have a serious low mag problem but have spent the last decade making sure my status is good. earlier this year i met a new neuro and when we were going thru the exam stuff i asked specifically about 'beats' (which are linked to brisk reflexes) and she said no you don't have them. so i felt smug lol. while you are waiting for all the appointments and results, you can consider making yourself as least like a common ms patient as possible. in part, this means adherence to public health recommendations for diet, and nutrient intake. hang in there :)
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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