[shortygirl]

Hello!

I'll try to keep this intro brief since I've got such a long list of symptoms. I'm 35, female, mother to two little girls.

About 2.5 months ago, shortly after I weaned my youngest, I started having all sorts of disturbing symptoms (see the list). I had an eval from my FNP who saw enough to send me for an MRI. That came back fine for brain with a little disc degeneration at C5-C6. My labs were normal, including B12. My Vit D was on the low end of normal so he had me take supplements.

Background: My brother has MS. My mom, all her siblings, some cousins and my brother have celiac's. I test negative but react when I eat it so I'm gluten-free. Since these symptoms started I've been free of grain, dairy, legumes, tomoatos, most potatos (get some starch in baked goods), soy. (I feel pretty good on this diet! No more bloated tummy.)

I see a neuro on Thursday. Truth be told, I was convinced this was MS b/c of the numbness, cognitive problems, and double vision. But, the brain MRI was clear.

So, this is pretty humiliating to list all these out, but I need to get well for my kids. Any ideas?

Numbness, prickling on entire right side for a few hours. Now just comes and goes.

Unexpectedly drop things out of my right hand, occasionally left hand

Can’t open/close doors or cabinets without looking at what I’m doing

Bump into, sideswipe things (not while driving, just walking)

Can’t feel the back of my head, always itchy

Sometimes the inside of my head, right under my scalp, feels inflamed

Couldn’t feel my left ear canal to insert the earplugs during MRI

Skin from ears to forehead is slightly numb; skin down to the middle of my back is slightly numb

Cheeks sometimes tingle

Tip of nose is slightly numb

Upper lip is slightly numb, hangs a little

Lower lip is slightly numb

Drool a little out of the corners of my mouth

Can’t evenly curl my tongue

Slur words sometimes

Slouch to the right, hard to get adjusted in my chair. Whole right side feels weak.

Head cocks to the right

Really weak neck when I’m looking up

Itchy spot on my left clavicle bone

Feels like eyes are unfocused, sometimes slightly fuzzy. Feel the need to blink.

Had double-vision in right eye on Xmas Day off and on.

See one tiny black spot with bright light around it every once in a while

Mild headaches every few weeks. Had one terrible headache in early fall.

Heart feels like it skips a beat (last 12 months). One time (past 2 weeks) my whole chest spasmed.

Gripping pain around my chest, scary to breath, felt like my heart might explode. (This was in the last month, but I can remember having this a few times in the far past.) This was not an anxiety attack. I know what those are.

Felt like my biceps were holding up heavy weight, but I was just lying in bed. Muscles were soft.

Outsides of both hands + pinkies are numb. Often numb in the middle of the night. (This has been going on since I was a teenager.)

Lots of flutters in my belly.

Mild bladder control problems, comes and goes

Constipation on the days I have trouble with my legs

Mild to moderate stabbing pain below rib cage, upper back, happens in episodes

Hips always sore

Sometimes right leg is dragging, weakness in both legs.

Tiny muscles spasms in my legs when I wake up in the morning

Very sore specific spots on the backs of my calves. (this has been going on for years). No bruising or anything on the skin.

Stub my right foot frequently.

Can’t navigate the maze of furniture in my house

Painful muscles spasms in both feet occasionally. Sometimes my toes fan out.

Restless legs

Say the wrong word all the time; the word is close but not quite, i.e. “lawn” instead of “soil” or “bread” instead of “toast.” Have trouble recalling simple words, takes a long time to get the word.

Can’t remember specific events (long time). Have to work hard and figure out hints to remember recent events (i.e. getting the car fixed).

Can’t see things that are right in front of me

Disorganized and can’t figure out how to fix it, not like me.

When I’m the passenger in the car occasionally feel like we’re driving too quickly and swerving


Thanks in advance for any help!

[glenntaj]

--an MRI of the spine to look for demyelinating disease? MS and other demyelinating conditions do not only strike the brain (though it's good to have a clear brain MRI).

It's possible that you have neurological symptoms as part of a whole systemic package (indeed, it seems as if your symptom list includes more than the neurological) that may be secondary to a metabolic or toxic disorder (any chance of exposure to nasty substances?). The sad fact is that many neurological symptoms caused peripherally vs. centrally can "fell" exactly the same, which is why investigation is often long and process of elimination in nature.

We have a list of tests and protocols for investigation at the top of this board in the Useful Websites "stickies", but a good place to start is with the Liza Jane spreadsheets at www.lizajane.org. Good tool for seeing what tests are available, which ones you've had, and tracking results patterns over time.

[mrsD]

1) is Arnold Chiari malformation... This should show up on a cervical MRI. Ask your doctor.

2) there is a condition called normal pressure hydrocephalus:
http://en.wikipedia.org/wiki/Normal_..._hydrocephalus

This latter condition sneaks up on people... and often is misdiagnosed. Please read the Wiki site carefully. Many of your symptoms seem similar.

My husband works with a woman who developed a herniation in the cerebellar tonsils and she had all sorts of odd symptoms
including mental confusion. She went to the Cleveland clinic to have surgery finally for this and is now back at work.

Also... what was your B12 reading? Some doctors say normal when in fact it is not.
People with food intolerances often develop malabsorption of nutrients. B12 and Vit D are only now being recognized, but others may exist too. Zinc, and Bvits may be affected as well.

[dahlek]

To augment Glenntaj's referral to LizaJane's tests and exams tho... You first have to understand what neuro's test for and why: http://www.neuroexam.com/content.php?p=2
This will help a bit in explaining that there are soo many different aspects to neurology that diagnosis is often not simple at all.
Then take a look at just the different types of neuropathies that there are:
http://neuromuscular.wustl.edu/alfindex.htm
Well, that embraces a LOT of issues just relating to neuropathies!
Have you been thoroughly checked out for both diabetes [a 3+ hour glucose tolerance test-at least] and also for any possible thyroid or endocrine [mainly thyroid] issues? How thoroughly have the gluten aspects been tested and also WHY only an MRI only of the brain? You could have fallen and not realized that something is now pinching in your spine and a zillion other issues.
Cognitive issues can occur with other neuro issues besides MS, I had them to a degree with my own neuro onset. And other factors could be causing the cognitive problems.
You have done a good summary and I'd copy that for your neuro appointment. You are giving him a summary of WHAT is going on with you that is not NORMAL! The neuro may focus on only one or two things he feels he can deal with? Or take it in as a whole. Don't assault the doc to 'make you well', tho...that never works. But, a GOOD neuro will try to help you work with whatever problems are diagnosed [if you are lucky] and find you the help to work around them.
I will bet you that your doc is going to order lots, LOTS more tests! Bring a notebook with you to keep track and ask for copies of the lab and other test reports... depending on what state you live in, they can be had for free or for a small charge of say $10. From what you have written? It does seem as if your neuro is the usual cautious, but at the same time a bit pro-active in the encouragment to start the Vit-D and all.
I hope this helps? Do read the 'Sticky' important information at the top of the page...it's lengthy, but it covers a lot of the neuropathy universe.
Please don't automatically think that you have MS! Some PN's are treatable, but it takes a LOT of time to heal those literally frazzled nerves. Others are not and the subject is complex and does often overlap with MS and endocrine and cardiac and nutritional issues to a huge extent.
Read up on posts by DarlinDeb as she has Celiacs and how it has affedted her neuropathies...
Keep faith and hearth in yourself to get this tended to and now go and hug those kids of yours! 's - j

[shalynn]

Hi. I'm new here also (but not new to being chronically ill). The others are right, you need more tests before MS can be ruled out. Sometimes tests change over time also, so they need to be repeated. I've been on the MS testing merry go round for four years. Although, I now believe I do not have MS.

There are many illnesses that mimic MS that can be ruled out with bloodwork. Also, evoked potential tests should be done. They pick up changes that the MRI sometimes doesn't. A spinal tap could be done too. Although, they aren't always positive in MS (especially early on). Having a brother with MS does raise your odds of having it, but not by a whole lot.

As far as your neuro appointment goes, try and stay calm. Take a small list with questions and some of your symptoms. Neurologist are known for quickly dismissing those with lists of symptoms. I'm only saying this because it took me seven neuros before I found one who would help me. I'm sure some of that had to do with the way I presented myself in the exam room. It shouldn't matter, but it does.

Also, make sure you are getting treatment for your symptoms. You don't need a diagnosis for symptom relief.

Good luck with your appointment.

[ldlordel@yahoo.com]

Take this list to your doctor. I might order an emg to test the reactions of your nerves along with blood work and glucose test. These are many of the same symptoms I had that although I had lesions on my MRI though not conisitent with MS. As I mentioned before finally they found out is PN. Cause unknown...fiqures LOL. Good luck. Dont panic. And remember if your not happy with Neuro Dr., try another. I was to three prior to my current Dr who was my second Dr, but this time he tried again and Eureeka he was delighted I came back for a second EMG after 2 years and confirmed we DO have a neurological disorder. Well dah.. heheheh.
Take care and be good to yourself first!

Originally Posted by shortygirl

Hello!

I'll try to keep this intro brief since I've got such a long list of symptoms. I'm 35, female, mother to two little girls.

About 2.5 months ago, shortly after I weaned my youngest, I started having all sorts of disturbing symptoms (see the list). I had an eval from my FNP who saw enough to send me for an MRI. That came back fine for brain with a little disc degeneration at C5-C6. My labs were normal, including B12. My Vit D was on the low end of normal so he had me take supplements.

Background: My brother has MS. My mom, all her siblings, some cousins and my brother have celiac's. I test negative but react when I eat it so I'm gluten-free. Since these symptoms started I've been free of grain, dairy, legumes, tomoatos, most potatos (get some starch in baked goods), soy. (I feel pretty good on this diet! No more bloated tummy.)

I see a neuro on Thursday. Truth be told, I was convinced this was MS b/c of the numbness, cognitive problems, and double vision. But, the brain MRI was clear.

So, this is pretty humiliating to list all these out, but I need to get well for my kids. Any ideas?

Numbness, prickling on entire right side for a few hours. Now just comes and goes.

Unexpectedly drop things out of my right hand, occasionally left hand

Can’t open/close doors or cabinets without looking at what I’m doing

Bump into, sideswipe things (not while driving, just walking)

Can’t feel the back of my head, always itchy

Sometimes the inside of my head, right under my scalp, feels inflamed

Couldn’t feel my left ear canal to insert the earplugs during MRI

Skin from ears to forehead is slightly numb; skin down to the middle of my back is slightly numb

Cheeks sometimes tingle

Tip of nose is slightly numb

Upper lip is slightly numb, hangs a little

Lower lip is slightly numb

Drool a little out of the corners of my mouth

Can’t evenly curl my tongue

Slur words sometimes

Slouch to the right, hard to get adjusted in my chair. Whole right side feels weak.

Head cocks to the right

Really weak neck when I’m looking up

Itchy spot on my left clavicle bone

Feels like eyes are unfocused, sometimes slightly fuzzy. Feel the need to blink.

Had double-vision in right eye on Xmas Day off and on.

See one tiny black spot with bright light around it every once in a while

Mild headaches every few weeks. Had one terrible headache in early fall.

Heart feels like it skips a beat (last 12 months). One time (past 2 weeks) my whole chest spasmed.

Gripping pain around my chest, scary to breath, felt like my heart might explode. (This was in the last month, but I can remember having this a few times in the far past.) This was not an anxiety attack. I know what those are.

Felt like my biceps were holding up heavy weight, but I was just lying in bed. Muscles were soft.

Outsides of both hands + pinkies are numb. Often numb in the middle of the night. (This has been going on since I was a teenager.)

Lots of flutters in my belly.

Mild bladder control problems, comes and goes

Constipation on the days I have trouble with my legs

Mild to moderate stabbing pain below rib cage, upper back, happens in episodes

Hips always sore

Sometimes right leg is dragging, weakness in both legs.

Tiny muscles spasms in my legs when I wake up in the morning

Very sore specific spots on the backs of my calves. (this has been going on for years). No bruising or anything on the skin.

Stub my right foot frequently.

Can’t navigate the maze of furniture in my house

Painful muscles spasms in both feet occasionally. Sometimes my toes fan out.

Restless legs

Say the wrong word all the time; the word is close but not quite, i.e. “lawn” instead of “soil” or “bread” instead of “toast.” Have trouble recalling simple words, takes a long time to get the word.

Can’t remember specific events (long time). Have to work hard and figure out hints to remember recent events (i.e. getting the car fixed).

Can’t see things that are right in front of me

Disorganized and can’t figure out how to fix it, not like me.

When I’m the passenger in the car occasionally feel like we’re driving too quickly and swerving


Thanks in advance for any help!

[Silverlady]

You have had some excellent answers. I only want to add two things.

1. Keep copies of all your medical records. Just ask for them, they may charge you a small amt for copying but it's important you have them. It may save you lots of money if you have to change doctors.

2. I noticed you have blurred vision, spots, etc. ...i.e. vision problems. I have neurological issues and it was all caused by an autoimmune problem, Sjogren's Syndrome ...it started one day with dry eyes and I didn't recognize the symptom. Be sure they do an autoimmune panel of tests.

Good luck,
Billye