Doc dropped "MS" as a possible. Ideas?

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Doc dropped "MS" as a possible. Ideas?

Postby OffTheGrid » Thu Aug 24, 2006 6:59 pm

I know you all probably get tired of people posting, "Is this MS?" and I'm sorry to subject you to yet another one of these. But this whole thing is going so slowly and I'm getting frustrated and I feel so *utterly alone*.

I'll try to be brief, but it's a bit impossible. If you have time, I beg you to read it because I'm very scared and wonder if there's anyone else who is going through what I am.

First problem: I woke up with an entirely numb leg. I couldn't move it, and it was terrifying. In 5 minutes the feeling came back and I chalked it up to sleeping on it funny.

Occassionally I have some shooting pain in the left back side of my head. It feels like someone is shocking my skin or something, but the pain isn't unbearable. This also went away.

Numbness gets worse: While trying to sleep, my right arm or left leg would start tingling with pins and needles. Doesn't matter how I sleep on it or whether I lie on either side, back or stomach. Sometimes I wake up and a limb is completely numb. This *only* happens while sleeping or lying down, but not while sitting at work, although once or twice I felt tingling in my left leg while driving.

Go to doc. Get tested for diabetes and thyroid (am overweight). I'm tired all the time, and also get tested for sleep apnea because my mom has it. All is normal, no sleep apnea.

Doc says he doesn't know where the numbness is coming from. I see a different doc. He says it sounds like either a degenerative disc disease or MS. I have some low back pain, but no neck pain. I'm told to get an X-Ray, but I put it off because the symptoms go away as quickly as they arrived and I convinced myself it was all in my head.

Yesterday, while walking (I'm in a couch-to-5K program), my entire left foot goes numb up to the mid-calf. I feel like I have no control over it. If I try to wiggle the toes, I feel excrutiating pain. It went away when I stopped walking.

Last night, I woke up and my left arm was completely numb, which is significant b/c it's the first time it's been the left arm. I got the X-ray today. My second doc said I'd have to have an X-ray before the insurance company will let me have the MRI.

I'm having terrible problems sleeping because of the numbness, and doc doesn't want to give me sleeping pills because he says they are addictive. I only got a few and quickly went through them.

I read some of the MS symptoms, and I don't know. Is this what MS is like? So far my doctors have acted as if they don't have a clue what it is because I don't have back pain accompanying the numbness, which only occurs during sleep.

I try looking up numbness while sleeping in google, and nothing seems to match exactly what is happening to me.
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Postby jimmylegs » Fri Aug 25, 2006 12:54 am

hi i know what you mean about ALONE! unfortunately there is a big range of things that are "like" MS and none of us are the same, although we have things in common. statistically, you are not like MS in that a large percentage present with optic neuritis. the numbness certainly sounds like a neuropathy, but there are lots of different kinds of those.

the requirements for diagnosis is a list of conditions based on statistics in patients with certain neurological problems. first they have to rule out peripheral neuropathies, and b12 deficiency, that kind of thing, then they have to look for a certain number of lesions in the spine and a certain number in the brain - without the mri it's really hard to say... they typically see oligoclonal bands in the spinal fluid of MS patients (but not in all patients) so there's a fun lumbar puncture involved in nailing it all down, bla bla bla. don't know how much of that you know already!

anyway the sensory loss is like what happened to me except yours is more patchy. do you sleep on your back? nerve conductivity can be affected by temperature so if it's a spine problem and you warm up your spine in bed it could be affecting transmission to various parts of your body.

don't know if that helped at all, but hopefully your insurance will get you sorted out sooner rather than later!
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Postby Loriyas » Fri Aug 25, 2006 6:11 am

I'm not sure if I'm following you but it seems that you have not had an MRI as yet. That would seem to be the next logical step. Ask your doc to order one as soon as possible so you don't have to keep worrying and wondering. If your insurance requires you to have an x-ray first before an MRI then you have completed that requirement without results and should be able to move on to the next test. Ask that the MRI be done. Then you can see what those results are and go from there.
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Postby amelia » Fri Aug 25, 2006 2:03 pm

The main thing you need to be doing now is getting the test, which means you will probably have to "spur" your doctors on. Unless you have a super fantastic DR, then you are mostly out of their mind as soon as they put your file away. Sleeping problems can also be attributed to you being stressed out. For a natural sleep, try Valerian Root. It's an herb you can find at Herb and vitamin stores. It will help you relax at night and will not hurt you. It will not make you sluggish the next day either. But it will relax you enough for some good sleep. Whatever you do, DON'T SMELL IN THE BOTTLE! Valerian Root really stinks. And no, it will not make you smell that way.
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Postby OffTheGrid » Fri Aug 25, 2006 2:49 pm

No, I haven't had the MRI yet. That is next. What bothers me is that both doctors seem completely clueless about this and don't see the gravity of the sleeping issues.

Sleeping is a problem because my arm and/or leg falls asleep! Or, I wake up with a numb arm and or leg. It's true - I'm almost always on my back when I wake up with a numb limb, but I fall asleep typically while on my right side.

Sleeping pills do not make me feel sluggish. In fact, they are rarely strong enough to combat the horrible feeling of having an entire leg be numb. I was taking two Sonatas to fall asleep before I ran out of samples.
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sleeping

Postby jimmylegs » Fri Aug 25, 2006 4:26 pm

my cousin recently reported that when she started taking a particular supplement it worked better for getting her to sleep than her former prescription. i can't remember the combination of nutrients in it but i'll be back at my coz's tonight and will ask. i personally have found that since i've ended up with this problem and started taking a lot of supplements, i can sleep far more easily than before. couldn't say which is helping me sleep, but you might want to try thinking about nutrients you might be slightly less than optimal on, and if you do some correction it could help you out. i know that to combat my numbness i had the best effect from some mega doses of b vitamins. but i knew i was low on b vitamins when i took them. so you might be able to find something that works for you - hope you are successful!! maybe there is a way to keep you from rolling over in your sleep with pillows or something? see if keeping the spine cool is any help? best wishes!!
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Postby OffTheGrid » Fri Aug 25, 2006 4:43 pm

Unfortunately, my sleeping position seems to have nothing to do with it. :( :( :(

The numbness also happens *while* trying to fall asleep. If I try to sleep on my left side or my back, it'll be the left leg. If trying to fall asleep on my right side or my stomach it's often my right side. This doesn't happen every night, though, but often enough.

Other times I'm waking up with a numb limb. That's usually when I'm on my back.

I take a multivitamin and have added a B complex since reading that could cause the numbness, but I doubt that I have a B-vitamin deficiency anyhow because I do eat red meat.
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Postby OffTheGrid » Fri Aug 25, 2006 4:56 pm

Oh, one other thing I wanted to ask, is how much does a spinal tap actually hurt? I read a book about a girl with cancer as a kid, and it said how horrible it was, and so now I'm terrified of it. I don't mind shots or giving blood at all. How much more painful is it than those?
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From the "insulin girl"

Postby lyndacarol » Fri Aug 25, 2006 6:06 pm

Dear Grid--Let me introduce myself: like many people here, I have my own particular suspicions about MS, well-known to folks who have been here a while. Here it is a nutshell, along with my questions and suggestions.

I think inflammation (specifically, mucous--sinus drainage in my case) starts the MS process in me. (Do you have sinus infections, allergies, or anything of this nature?) My MRIs have each noted "severe sinusitis" although I have no symptoms there--no pain, no pressure. (Before an MRI, ask that particular note be made of your sinuses.)

I think this mucous prompts my pancreas to secrete excess insulin. My insulin levels have tested high, as have friends with ms who have been tested. (Please consider asking for a "fasting serum insulin test.")

Insulin is an irritant; I believe it causes damage throughout the body--blood vessels, kidneys, bladder--it even crosses the blood-brain barrier. The immune system then steps in to clean up and over-does it.

I have been trying to tamp down the insulin production--by stopping the mucous, by restricting the diet so limited glucose in the bloodstream will require smaller amounts of insulin--nothing seems to do it yet. Recent reading (thanks to jimmylegs) shows me that normal insulin secretion is dependent on vitamin D (You may want to ask for a test of 25-hydroxyvitamin D as well.). I am now supplementing vitamin D.

This is MY program. Investigate, read, and you will choose your course of action, too. Although we have many different opinions here, we are generally respectful and supportive of everyone's choice at this site--after all, we HATE this disease!!!
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lumbar puncture headache

Postby jimmylegs » Fri Aug 25, 2006 11:10 pm

hi again, about the LP, it is scary, and there are risks they warn you about, but mine was okay during the actual procedure.

there is a kit, they swab down part of your back, they explain what they're doing, they do a local anasthaetic, and for me when the doc started inserting the needle, it was more knowing that this object was penetrating my spinal cord millimetre by millimetre and being able to feel it moving at all that freaked me right out. i was making some hissing noises and the doc said does it hurt? and i said 'not pain, but i can feel it, and i don't want to know that it's there at all!'

so he withdrew the puncture he had started, froze me up a bit more, and redid it - second time was much better although still tense. they show you the samples they've taken out. pretty much just looks like water.

then the fun began. they'll tell you to lie down after because "some people get a headache afterwards"

when you poke a hole in your spinal cord, the fluid can escape, the pressure drops, and then unless you're lying down you get this excruciating headache. i tried to function for a few days, read up on it a little, pain killers were unreliable treatments so i was only able to get on the computer in fits and starts but i found some info on treatment and prevention. after that i self-prescribed three days of bed rest in order to let the punctures heal, and then i was okay. for prevention, they have to put the bevelled end of the needle into your spine at a particular angle so that the hole is self-sealing when there is internal pressure. if they put it in at the wrong angle the incision can flap both ways like saloon doors.

here's a link to info on avoiding the headache:
http://www.pulmonaryreviews.com/dec00/pr_dec00_puncturehead.html
and i also found this page interesting because it has an image that shows the different kind of holes that can be made that cause a problem:
http://www.geocities.com/HotSprings/Villa/5422/index.html
don't think i ever watched the technique video!

the results took a long time compared to the other bloodwork. my neuro referred to o-rings or something like that which i finally managed to figure out were the oligoclonal bands. the bands look like blurry bar code labels on a slide. mine indicated the damning chronic CNS inflammation that apparently is not seen in b12 deficiency and is seen in a large number of ms patients.

hope that helps
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