Undx's MS and Scared
 

I'm new to the group and I'm scared. Scared because I'm just not getting answers. :(

I've had three events, October 2011, May 2012, November 2012 with these issues and a few new ones added especially during the last two episodes. Each episode lasted about 48hours and I slowly improved between each one. It takes about 6-8 weeks to recover.

-Muscle weakness
-extreme stiffness
-tremors
-vibrations in head and body-my body is always vibrating
-eyes balls hurt and feel like they are always jumping
When my eyes are close, rolling black blocks to the point of making me dizzy -Eyes have been checked and nothing.
-severe headaches
-shortness of breath
-squeezing under by rib cage-tested for stomach issues, gall bladder-normal
-arms, legs pins and needles
-extreme bouts of heat rushes what make me tingle all over and pins and needles-the only thing that helps is having a popsicle
-stomach issues and pain
-stabbing, ribbing pain in chest and stomach
-trouble hearing at times
-flashes of white light in my eyes.
-blurred vision
-lost bladder- peed on the floor while brushing me teeth and didn't even feel it
-lost bowels
-trouble processing what a person says
-moving strips of numbness that move all over the body
-Buzzing tingles that shoot up my spine when I bend my neck to my chin - this is a newer symtom
-jaw pain
-dizziness
-trouble swallowing - this has never gone away and gets worse with each event
-feeling like I'm walking on a tilt.

I've been tested for Lyme, Lupus and a dozen other things and everything is negative.

"White matter evaluation suggests no convincing evidenct to suggest a demyelinating process. There is a focal T2 and FLAIR hyperintensity white matter seen in the rightfrontal lobe which is non specific . Incidental note made of a right posterior frontoparietal developmental venous anomaly."

The scariest thing happened in November. I was lying down and went to get up and my body was paraylised from the neck down for about 15 seconds.


I have had a brain and spine MRI which states...
"White matter evaluation suggests no convincing evidenct to suggest a demyelinating process. There is a focal T2 and FLAIR hyperintensity white matter seen in the rightfrontal lobe which is non specific . Incidental note made of a right posterior frontoparietal developmental venous anomaly."

I've seen two specialist which basically say "They can't say I have MS and the can't say I don't. "

I am on gabapentin and baclofen which help a bit with the symtoms.

I am lost and terrified at this point.

Kim

Welcome to NeuroTalk:

What other drugs do you take? Any ACE inhibitors for blood pressure?

Gabapentin can cause fecal incontinence in some people.
Also some of your other symptoms, like the shortness of breath.

I am recovering from a drug induced lupus from an ACE inhibitor and I had many of your symptoms. Drug induced lupus does not elevate the ANA blood work....so blood work may appear "normal"

Do you have any swelling? Spells...like you describe can be from angioedema also, which is acquired from ACE inhibitors or can be present from birth (genetic). Bradykinin builds up in the body, and causes edema of the internal organs, shortness of breath,
GI pain, burning sensations, and sometimes swelling of the hands/feet/stomach, etc. This is due to a lack of an enzyme that metabolizes bradykinin away.

Here are some links...
http://www.haea.org/

http://www.haehope.com/hae-attacks/p...e-attacks.html

http://www.hcplive.com/publications/...-04/2005-04_02

One of the less common forms of angioedema is connected to estrogen use in females.

Also angioedema does not always have hives. That term is also used for hives, and can be confusing. Hives are mediated by histamine. Angioedema is bradykinin induced...which is a different biogenic amine. Angioedema is difficult to diagnose, and often patients do not get proper care. There are specific blood tests to show the various types. The cycling of "spells" or "attacks" suggests this however for you, combined with the lack of lesions on MRI.

Another thing to check is your B12 level. This should be above 400 pg/ml (US units). Low B12 will affect the nerves all over the body, and can be confused with MS symptoms and other things.
It is estimated that 40% of adults in the US are low, because of heavy use of acid blocking drugs, or other medications, vegan lifestyle, or hereditary loss of intrinsic factor in the stomach.
Many of your symptoms resemble low B12 situations. One characteristic test is Romberg's sign. If you cannot stand upright alone with your eyes closed, this suggests you need testing ASAP.
Test ranges are outdated, and go very low, and do not reflect the new protocols that are about 10 yrs old now. So don't accept "normal" from your doctor, get the actual result and post it here.
If you are in another country post the concentration as well as the numbers. pg/ml, nmol/L ? ng/L ? We've seen on these boards people who were going to many doctors and none of them received proper testing or treatment for very low B12 levels!

Here is a new video illustrating what low B12 can do to your body:
http://www.youtube.com/watch?v=BvEiz...ature=youtu.be

And this is my B12 informational thread:
http://neurotalk.psychcentral.com/thread85103.html

The MS experts will come on here and address your MS questions specifically. I can only address other issues for you.

Thanks for the info. Interesting stuff. :)

The only medication I've been on before and after the May event is thyroid meds since I'm hypo. I only started the gabapentin and baclofen in May.

My b12 levels have always been in the normal to normal/ low range and are monitored every three months along with my thyroid levels and I've been taking B vitamins for years.

My ana was slightly elevated, I don't have the number. Nothing else seems to be out at this point.

The breathing issue has been a problem and is controlled by two puffers and all pulmonary testing has been normal.

I'm lost to say the least and so is my doctor and that is why she sent me to the MS clinic here. I'm really surprised they didn't do a lumbar puncture to maybe help rule out MS.

Kim

I forgot to mention that I don't have any swelling and my b12 level was 420 in Dec. 2012

420 is in the low range. The new cut off is 400pg/ml in US.
Other countries may have different measurement concentrations and would have to be mathematically adjusted to US units.

Your swelling may be only internal. GI and breathing. I didn't get
the skin swelling until my angioedema was SEVERE. Most of mine is GI.

If you have the genetic version, you don't need a drug trigger.

Start reading my B12 thread. I strongly suggest you start oral
supplements, daily. 5mg a day on an empty stomach for 3 months and then get retested, to see if that level is better.
If your neuro symptoms are due to the low level, they should improve slowly as your new level rises.

I'd also get that ANA retested again. ANA can fluctuate (between normal and abnormal), and lupus is a major cause of nerve damage/pain in some people.

I think here in Canada the normal range is 200-600. I might be wrong. I will have my ana retested. Also the only thing that seems to be a pattern is...a month or so before each event I was recovering from a virus.

I will switch to b12 from the b-50 complex my doctor has had me on. It will be interesting to see if there is an improvement.

Kim

Welcome to NeuroTalk.:) So sorry as to why you are here, but glad
you found us. Hang in there...MS is not a quick DX to make. Time
and tests will eventually show it ugly face, if it's there. In the
meantime, it is good that your Doc is treating your symptoms.

There are a few MS mimic diseases out there and they must be
eliminated, sometimes, before MS can be DXed. There is no
definitive test to DX MS, as yet. (they're working on it:rolleyes:)

Stick with us, we'll try to help you through.:hug:

Thanks, Sally and Mrs.D. I hope one they get this figured out. My doctor had warned me months ago that if it is MS it might be years before I get a dx.

I hope it isn't MS but I question the recovery after after event and it is works exactly the same way everytime.

I forgot mention also (keep forgetting things. lol) during the May event with everything else I was lying on my side and my I had a warm tingling rush (not like pins and needles) go down my leg and my leg felt like it turned to mush and disppear. :( It last a few minutes and I rolled over so freaked out.

regardless of whatever diagnosis you may eventually given, being in limbo is scary and frustrating. Thank goodness your doctor appears (from your note) to be ordering tests and attempting to treat symptoms in the meantime.

I wish you well!

kim,

welcome to NT. i can appreciate how frightening this is for you.
having tests and waiting is very difficult. sometimes with MS it takes a while for lesions (if there are any) to appear on the mri.

if you have visual disturbances i'd also consider seeing an opthamologist (there are also MS eye docs). they can also be helpful.

please let us know how things are and what's happening with you.
we're here to help.